Ankara, October of 2002


A Timely Report H.R.H. Prince El Hassan Bin Talal, President of the Club of Rome When in 1968 Aurelio Peccei founded the Club of Rome, he wanted to create an organisation that would serve as a forum to animate debate about the opportunities and challenges facing Humankind at the many crossroads of the future. Of the challenges ahead, those that awoke perhaps the most interest spoke about preserving the dignity of each person, and making the changes, in both law and private and collective conduct that would help us build a more just world inspired by a sense of solidarity. The new world would be a place where our human and cultural diversity would be prized, while the inhabitants of the planet would strengthen ties through solidarity with each other and with future generations. For this reason, when the Club of Rome commissioned Rafael de Lorenzo to draw up the report on the future of people with disability throughout the world that is published here, its motivation was to elucidate new perspectives for disability in the world today, and to identify the steps of the journey that people with disability must travel towards effective integration into the life of the community. This journey will require specific measures to combat discrimination, reinforced with positive action to promote the inclusion that we are all working towards. While this itinerary will reward people with disability in their to claim to their unalienable equal rights, it will also give us a model that can be used to defend the value of human diversity, and that can be wielded to fight against exclusion on the grounds of any type of personal difference. Hence, the Report that Rafael de Lorenzo presented to the Annual Conference of the Club of Rome in Ankara in the fall of 2002, and that was approved after the incorporation of the suggestions arising from its analysis and debate, provides a text that speaks not only of the emancipation of people with disability, but of the emancipation of each and every one of us. The Report is not only a vindication of the rights of the disabled, it is a manifesto to endow all human beings with the wherewithal to give the best of themselves to our common cultural, social and economic heritage. As the author reminds us in his final considerations, we cannot afford to squander the resources that each of us nurtures inside. It was, therefore, a source of satisfaction for the Club of Rome to receive the early edition of this Report printed in Spanish thanks to the generous and on-going support of the ONCE – the National Organization of the Blind of Spain – and its Foundation. This first version immediately conveyed the unequivocal message that we must all strive to build a collective heritage that will only be strengthened every time we treat each other as fellow human beings. Our collective heritage grows every time we work to ensure that nobody’s personal circumstances will ever constitute an insurmountable barrier to inclusion and to the solidarity we owe each other. It is also a source of satisfaction to know that behind the Report is all the enthusiasm of the exemplary institution that is the ONCE and its Foundation, and the dynamism of the Spanish Chapter of the Club of Rome that have backed


the author every step of the way in this endeavour, that has fully met each and every one of the difficult expectations it entailed. Thanks are, therefore, due from the Club of Rome to the author and all of the people who assisted him along this intellectual journey that will help us continue to think globally while acting locally to promote the wellbeing of each and every one of our fellow human beings and of those who will succeed us in the future.

The Report of the Club of Rome --- the ONCE and the ONCE Foundation in their fight for the integration, equality and dignity of people with disabilities Miguel Carballeda Piñeiro, President of the ONCE Carlos Rubén Fernández Guitiérrez, Vice President of the ONCE and President of the ONCE Foundation The National Organisation of the Blind of Spain is celebrating its 65th anniversary and the 65 years it has worked for the social emancipation of the blind and the severely visually impaired in Spain. It was fifteen years ago that the ONCE created its Foundation as its vehicle for cooperating with people with other, nonvisual disabilities to work for their social integration as well. All of these years of experience in working for integration and equality have taught us that convincing society of the full dignity of people with any type of disability is a truly arduous task that sometimes seems to be so complex that it is almost impossible to fulfil. However, when people with disability accept the crude reality of their lives and, always aware of their limitations, decide to fight to overcome them, their willpower to succeed almost always vanquishes the difficulties they face. When the families of people with disabilities and associations in the Disability Movement decide to take action together and in a proactive way, people with disability make their voices heard loud and clear, and they succeed in carving out a niche for themselves in society. When social policies make the necessary resources and the right conditions available they help attenuate the disadvantages linked to disability, and make a real contribution to promoting integration. When society and each and every one of us shoulder our responsibility from an ethical and human standpoint, forming common cause with our fellow human beings, society is transformed. It begins to recognise and respect each of its members, no matter what their personal characteristics may be. It is then that we can see ourselves reflected in each other, and truly do for others as we would have them do for us. When all of this becomes reality, the sense of utopia will melt away to become a real, palpable society where each of us has a place. The ONCE and its Foundation are highly satisfied with the report on the The Future of People with Disability in the World because of the wealth of analyses it offers from many different perspectives, very much in line with our own philosophy, culture and practical reality. We would like to express our thanks to the Club of Rome for deciding to take on board the problems facing people with


disability. Special thanks must go to Ricardo Díez Hochleitner, the then president of the Club and Isidro Fainé Casas, the President of the Spanish chapter for their tremendous support since the beginning of this project until its completion. Our thanks are all the more heartfelt for their having entrusted the task to a man like Rafael de Lorenzo, who has worked untiringly on the ONCE’s project in its fight for the social integration and equality of people with visual or any other disability, from the different positions of responsibility he has held within the Institution. We are proud to have been able to contribute to the successful completion of the Report. We are all the more pleased that this work could be done under the leadership of a member of the ONCE, as it will constitute a relevant Spanish contribution to the worldwide debate on the subject of Disability. Also crucial to the success of the project has been the work of the excellent Technical Committee, headed by José Manuel Morán, with a team of professionals who are often close collaborators of ours. This Report is firmly rooted in the vision of the ONCE, its members and the vast majority of people with disability. Thanks to the efforts of all of its members, the ONCE is making strides in improving the quality of life of people with disability, helping them move towards the social integration that materialises the principle of human dignity. As an independent organisation, the ONCE provides a wide range of programmes and services specifically designed to meet the needs of its members. It strives to demonstrate that a well organised Civil Society can meet these needs with great efficiency, but with a big dose of human understanding as well, acting with great professionalism, but from the heart. This is achieved by articulating mechanisms for cooperation with social movements and Public Authorities to continue advancing along a path still plagued with uncertainties and pitfalls, but also full of opportunities and hope. Along these lines, and among other objectives, the ONCE Foundation has succeeded in creating some 50,000 jobs for people with different types of disabilities over the last 15 years. This has required a change in mindset and an evolution from the era of the passive policies that bred resignation, dependence and social exclusion to the era of self-determination, independence and the social inclusion of people with disability and the organisations that represent them. Finally, through our extensive experience, with our successes and disappointments, the ONCE and its Foundation make common cause with the struggle of people with disability everywhere and stand four square behind the ambitions and objectives expressed in the Report, with the commitment to continue working, together with many others to reach the ideal we all cherish of a life with dignity for people with disability. We would like to convey a positive message of hope that it is possible to advance towards our goals in a real and effective way, as our own experience has borne out. The results of our efforts are palpable, although we cannot rest for a moment because, as one of our more emblematic slogans says, “We still have a long way to go”. We are firmly committed to keep working in close cooperation with the social movement and public and private institutions in our own country and in the international arena to continue to advance towards our objectives. Madrid, November 2003.


The Report on “The Future of People with Disability in the World” and the Spanish Chapter of the Club of Rome Isidro Fainé Casas, President of the Spanish Chapter of the Club of Rome When at the end of the last decade, the ONCE Foundation intensified its collaboration with the Club of Rome and its Spanish Chapter, it was easy to foresee that this collaboration would lead the Club to expand its interest in the issues affecting people with disability. It was clear that before long, it would begin to study them more explicitly along with others more traditionally in line with its work. This was not an entirely new tack, of course, as since its inception the Club has always been concerned with issues regarding human dignity. However, by focusing more directly of this subject, it wanted to contribute to helping to relieve the crude reality that people with disability must face, marked by social exclusion and exclusion from all spheres of collective life. This Chapter was aware of the threat that this involves to human dignity and the impediment to the development not only of the people who are victims of discrimination, but of all of society that, through the exclusion of some of its members, forgoes the valuable contributions they could make. To the expectations of harvesting a wealth of knowledge on this new subject, we must add the enthusiasm for this new initiative of the Club’s then President, our colleague and the Honorary President of our Chapter, Ricardo Díez Hochleitner. His sensitivity and enthusiasm for all projects that contribute to accelerating human development, without discrimination or exclusion, was a guarantee that soon this collaboration would start to bear fruit. That is why, when I had the pleasure of hearing, at the Club of Rome’s Annual Conference in Vienna, four years ago, how the Club commissioned Rafael de Lorenzo to prepare the Report that is being published now, those expectations were coupled with a firm commitment, both personal and on behalf of the Spanish Chapter to give all the support we could to the endeavour. The Chapter, thus, provided enthusiastic support, and as advances were made available, communicated them promptly among its members. Hence, the Chapter felt sure that these early debates and publications on the integration of people with disability in today’s society would contribute to the work it was already carrying out on such issues as immigration, sustainable development, solutions to unemployment or problems in these times of economic uncertainty and scientific development. It became clear that the concerns of people with disability when they contemplate the future differ very little from those of everyone else. It also became clear that anyone at some point in life may become the object of exclusion on the grounds of one difference or another. We became convinced that we could not look forward to a future without fear until we overthrow forever the double standard that condemns some people to social exclusion. Since the very beginning of this endeavour, then, with Ricardo’s sensitivity,


heightened by his fond family memories, together with Rafael’s personal commitment and expertise and the Club of Rome’s ongoing concern for the quality of human life, there was no doubt that very soon, we would have before us a Report that combined innovation, rigour, commitment and proposals for the future. The Report would be able to take advantage of the valuable experience of the Disability Movement in Spain and the fight of its members for effective and full integration, thanks to the active, intelligent and innovative leadership of organisations like the ONCE Foundation. The aim of the Report was to reflect the full gamut of experiences of the disabled, since the fight for inclusion is not limited to the labour market and educational opportunities, but permeates every aspect of life. It advocates exploring every opportunity as our cultures change their mindsets, and these changes are reflected in our countries’ legislations, and as our societies become aware that the problems that affect people with disability are problems that affect us all. This Report, whose publication is made possible through the organisational and financial support of the ONCE and its Foundation since the very beginning, is articulated around the idea of promoting the social inclusion of people with disability through a combination of anti-discrimination measures and affirmative action. The scope of these efforts, however, goes well beyond the collective of people with disability, to benefit all members of society. The Report that is presented here reaches much further than was originally anticipated. These pages convey not only the personal commitment of the author, but his professional insight and his vision of the future when he stresses that we cannot renounce the ethical aspects of the inclusion of all members of society and the value of human diversity. In this diversity, where every human being can be who he or she really is, without fear of rejection by others, as the Report concludes, there can be no progress in the pursuit of human quality unless the inalienable rights of each and every person are upheld. When this happens, at last the centuries' long struggle for true equality between all human beings, no matter what their capacities and unique features may be, will be over. The chapters of this Report are, therefore, not only a call to stop discrimination against people with disabilities, but also a manifesto that speaks of the contribution that each of us can make, from our very diversity and differences, when we give of ourselves for the benefit of our cultural, social and economic heritage. As Rafael de Lorenzo states in his closing remarks, we cannot afford to squander the resources that we are all capable of contributing. Finally, all of these ideas dovetail with those of our Chapter of the Club of Rome, a Chapter that has always been aware that at this human crossroads, it is our responsibility to endeavour to make reality the human revolution that Aurelio Peccie talked about in one of the Club’s first Reports, “Testimony of the Future”. If today’s men and women are to fulfil their potential, people must be


transformed, so they can respond to the requirements of the twenty-first century, and initiate from within themselves the spiritual renaissance that we all long for. With this new awakening will come new values and sources of motivation that will lead to spiritual rebalance and solidarity with our fellow man. This will allow us to re-establish what Peccei described as supreme goods and necessities, that is, love, friendship, understanding, solidarity, a spirit of sacrifice and hospitality. The closer these goods and necessities bind us to our brothers and sisters from the four corners of the earth, the greater our collective gain. As this Report sets out in its conclusions, beyond references and proposals to forge a more humane future for people with disability, we must commit ourselves to promoting on-going affirmative actions to support human diversity, and to recognize it and defend it as part of our common heritage. This will allow us to acquire a new wealth to treasure in our hearts, expressed in the will to see ourselves reflected in our fellow men and women, and to treat each other as we all deserve, with human dignity, independently of each one's position in life.


REPORT TO THE CLUB OF ROME TABLE OF CONTENTS Chapter One INTRODUCTORY ASPECTS..................................................... 13 1. 2. 3. 4. 5. PRESENTATION.............................................................................. 13 1.1. Background....................................................................... 13 1.2. Methodology...................................................................... 15 THE REASONS FOR THIS REPORT..................................................... 16 THE PRINCIPLES BEHIND THE REPORT.............................................. 17 THE PREMISES OF THE REPORT........................................................ 27 THE CONTENT OF THE REPORT......................................................... 19 20

Chapter Two DISABILITY AND THE NEW DILEMMAS FOR HUMANITY 1. 2. EXPECTATIONS AND UNCERTAINTIES FOR THE NEW TIMES................. 20 EXPECTATIONS OF PEOPLE WITH DISABILITY.................................... 27 2.1. The realities of disability: A portrait in grey............................ 27 2.2. The roads towards a modern society..................................... 29 2.3. Society and the perception of disability..................................34 2.4. Human Development and disability....................................... 37 2.5. Equality and participation in an inclusive society..................... 42 THE REALITY OF DISABILITY AT THE BEGINNING OF THE 21st CENTURY............................................................. ..................43 3.1. The concept of disability...................................................... 43 3.2. Statistical realities at the beginning of the 21st Century..........44 3.3. Legal Realities.................................................................... 50 3.4. National Policies and people with disability............................. 55 3.5. Social changes and disability................................................ 57


Chapter Three THE OPPORTUNITIES THAT EXIST AND THAT CAN BE CREATED......................................................................60 1. DISABILITY IN THE PERSPECTIVE OF HUMAN RIGHTS......................... 60 1.1. The rights of minority groups............................................... 60 1.2. Non-discrimination and positive action, the keys to guarantee the rights of people with disability........................................ 61 2. EDUCATION AND LIFE-LONG LEARNING FOR ALL................................ 63 2.1. Integrated education.......................................................... 64 2.2. Education. What are our aims?............................................. 68 2.3. Training in the Information Society....................................... 70 3. OPPORTUNITIES AND EXAMPLES OF INCORPORATION INTO THE LABOUR MARKETS.................................................................... 72 3.1. Changes in opportunities for employment.............................. 74 3.2. The option of sheltered employment..................................... 75






The transition to mainstream employment: innovative formulae for the inclusion of people with disability in the mainstream labour market.................................................................... 76 3.4. Quota systems................................................................... 77 3.5. Economic support for companies and workers........................ 78 3.6. Self-employment................................................................ 79 3.7. Supported employment....................................................... 80 3.8. The role of the different social agents.................................... 80 3.9. Social responsibility and company ethics............................... 81 3.10. The new dimension of non-discrimination in employment......... 84 3.11. Challenges and opportunities in employment.......................... 84 3.12. Tapping new opportunities................................................... 87 SOCIAL PROTECTION AND SOCIAL SERVICES.....................................87 4.1. Social Security as an instrument of social cohesion................. 89 4.2. Social services, fundamental for the welfare of individuals and society.............................................................................. 90 EXPECTATIONS FOR TECHNOLOGICAL CHANGE AND SCIENTIFIC AND MEDICAL ADVANCES...................................................................... 91 5.1. Innovation, design for all and user participation......................91 5.2. Medical advances and disability............................................ 99 5.3. Medicine, society and disability........................................... 101 5.4. Genetics and the discovery of the “Book of Life”....................104 5.5. Bio-ethics as a protection against dehumanisation.................106 5.6. Desirable objectives.......................................................... 107 PEOPLE WITH DISABILITY ALSO HAVE THE RIGHT TO ENJOY LEISURE AND CULTURAL ACTIVITIES........................................................... 110 6.1. A society for all citizens..................................................... 110 6.2. Leisure and culture as determining factors of quality of life.....110 THE LIFE OF THE CITIZEN AND ACTIVE PARTICIPATION IN POLITICAL DEVELOPMENT............................................................................. 116 7.1. The life of the citizen......................................................... 116 7.2. The Disability Movement and associations representing people with disability................................................................... 118 7.3. The ways groups are articulated......................................... 119 7.4. Political action in the Disability Movement............................ 120 7.5. The content of representative political action........................ 122 7.6. Parallel actions................................................................. 126 7.7. Financing representative political action............................... 126 7.8. Social responsibility.......................................................... 127


Chapter Four QUALITY OF LIFE BASED ON SOLIDARITY…………………..129 1. THE NEED TO RECREATE VALUES IN A CIVILISATION AT A CROSSROADS............................................................................. 129 1.1. A solid social environment................................................. 132 1.2. A transforming humanism that fosters the development of Humankind...................................................................... 133 1.3. The value of diversity........................................................ 134 THE ADVANTAGES OF SOCIAL COOPERATION................................... 135 2.1. Citizens with a social conscience......................................... 138 2.2. Moral and economic competitiveness of solidarity..................138 2.3. The Disability Movement and cooperation in a spirit of solidarity........................................................................ 140




COMPETITIVENESS AND SOCIAL COHESION: OPPORTUNITIES FOR INTEGRATION AND INCLUSION THROUGH SOLIDARITY..................... 142 3.1. Globalisation that benefits all citizens.................................. 142 3.2. The non-profit sector and the Social Economy: Initiatives for inclusion.......................................................................... 145 3.3. Opportunities for cohesion in the Interactive Society............. 147

Chapter Five ROADS TO THE FUTURE…………………………………………….150 1. THE DEVELOPMENT OF THE NEW MAN AND HIS RELATIONSHIP WITH FUTURE GENERATIONS: THE VALUE OF THE ETHICAL REFERENCE OF INCLUSION................................................................................. 150 1.1. Inclusion as a defence for personal dignity........................... 150 1.2. Promoting solidarity as a way of building a civilised society.......... .................................................................................. 151 1.3. Ethics in favour of human diversity: From civilisation to decency....................................................................... 153 PROPOSALS FOR DEBATE AND ACTION ON DISABILITY AND HUMAN DEVELOPMENT............................................................................. 154 2.1. New strategies for confronting old problems......................... 154 2.2. The general framework for action with regards to people with disability: evidence, principles and criteria........................... 157 2.3. Some proposals for positive action...................................... 172 RECOGNISING HUMAN DIVERSITY IS THE KEY TO A MORE HUMANE FUTURE......................................................................... 180



Annexes REFERENCES AND SOURCES..................................................... 183 BOOKS, ESSAYS, ARTICLES AND REPORTS.............................................183 OFFICIAL DOCUMENTS........................................................................ 188 SOME WEB REFERENCES FOR INFORMATION ON DISABILITY....................190


ACKNOWLEDGEMENTS The Director of this Report would like to recognise and sincerely thank the people and institutions without whose trust and collaboration it would have been impossible to begin and conclude this work. I would like to begin by expressing our personal thanks to the Club of Rome, its Executive Committee and, most especially, Ricardo Díez Hochleitner, for the trust they placed in the Director of this Report and for the special sensitivity shown considering the fact that he is, himself, a person with disability. Likewise, we would like to express our sincerest thanks to the Fundación ONCE de España, to José María Arroyo Zarzosa and Miguel Carballeda, the outgoing and incoming Presidents of the ONCE and the Fundación ONCE, and to Carlos Rubén Fernández Gutiérrez, the President of the Fundación ONCE, for their institutional and material support, which were of great assistance to the Director of this Report and his team of collaborators. We would also like to thank the Spanish Chapter of the Club of Rome, and especially its Chairman, Isidro Fainé, for their constant support. The list of personal thanks would be endless, as we have had many, extremely valuable contributions in drawing up of this report. Therefore, to make sure that I include everyone, I would like to express my thanks to all those who have contributed either directly or indirectly to the Report, with specific mention of my closest collaborators on the various levels involved. In the first place, my most sincere thanks to the experts designated by the Club for their contributions to the Report, specifically Ricardo Díez Hochleitner, Ruth Bamela Engo-Tjega, Alicia Bárcena, Ashok Khosla, Patrick M. Liedtke and Keith D. Suter. In second place, my deepest acknowledgement to the group of international experts who, from the outset, contributed with their expertise, giving us such different perspectives from different personal, cultural and regional attitudes. This group was formed by Nicola Bedlington, a specialist consultant in disability from Nyon (Switzerland); Jerome E. Bickenbach from the Queen’s University in Ontario (Canada); Miguel Ángel Cabra de Luna, Director of International Relations of the Fundación ONCE (Spain); María Soledad Cisternas Reyes from the Universidad Diego Portales in Santiago (Chile); Michael Fox, of Access Australia; Thakur V. Hari Prasad from the Rehabilitation Council of India; Luis Leardy of the Fundación ONCE (Spain); Joshua Teke Malinga of the Pan-African Federation for the People with Disability (Zimbabwe); Ryosuke Matsui, of the International Rehabilitation Committee for Asia and the Pacific (Japan); Constantino Méndez Martínez, General Manager of the company Fundosa Social Consulting (Spain); Barbara Murray and Susan Parker, from the International Labour Organisation; Gerard Quinn from the National University of Ireland; Antonio Remartínez, of Bioingeniería Aragonesa (Spain); Stefan Trömmel, of the European Disability Forum; Lisa Waddington of the University of Maastricht, in Holland and Sid Wolinsky, specialist in disability of the World Health Organisation and member of the group of Defenders of the Rights of People with Disability in California (USA). It is, likewise, necessary for me to mention here, and to acknowledge the splendid work carried out by the Technical Committee created by the Director of this


Report. The dedication, commitment, professional approach and efficiency of this Technical Committee was such that each one of its members deserves to be considered a co-author of this report, although the Director of the Report accepts full responsibility for the results of this effort. At the head of this Committee, the technical coordinators made a notable contribution, José Manual Morán Criado, Vice-chairman of the Spanish Chapter of the Club of Rome and Antonio Jiménez Lara, specialist consultant on disability and also a member of the Spanish Chapter of the Club, were always available to help the Director of the Report; the Secretary of Communications, Clara Eugenia Calvo Arrojo, a lawyer, who, together with her general tasks in the Committee, was responsible for coordinating the work of the international experts. Our most sincere thanks to the three of them and very especially to José Manual Morán for having been capable of transmitting to the rest of the team the necessary enthusiasm to lead this project to a successful outcome and for having been a true means of salvation at time when the project seemed about to flounder. The list of the members of the Technical Committee, all of whom were Spanish, is not very long but it was a group of people characterised by their excellent professionalism. Not only did they made this report possible, they all contributed to an unforgettable personal experience through the numerous meetings which were held, the contrast of viewpoints and the integration of the different contributions, all of which led to an invaluable and enriching experience. The men and women in this team, besides the aforementioned technical coordinators and secretary of communications, were José María Alías Martín, Chief of Documentation of the press agency Servimedia; Mercedes García-Camino Burgos, Director of Innovation of the Asociación Telefónica de Asistencia a Minusválidos and collaborator of the Fundación Telefónica; Rosa María de la Parra González, economist and Luis Cayo Pérez Bueno, Technical Director of the Spanish Committee of Representatives of People with Disability. Finally, I would like to express my thanks to my personal secretary, María José González Arribas and to José Manuel Morán’s personal secretary, Purificación Val Pérez, who contributed with their always excellent work in preparing texts, arranging meetings and shuffling agendas that always seemed to be at loggerheads. I would also like to add my very special recognition of the translator, Paul House, who was faced not only with a specialised text plagued with the jargon of the world of disabilities, but had to work whilst incorporating last minute changes and corrections. It was his unflappable nature and professional approach that made it possible to complete this adventure within the programmed time limits. My thanks to Sallie Russell who revised the final version. And last, but certainly not least, this list of acknowledgements would not be complete with mentioning Jesús Campos, The Director of Ediciones del Umbral, and all of his team who once again deployed all of their professional know-how and made room in their crowded publishing schedule to take on one more task for a friend. It was they who brought on board the excellent bookbinders Miguel Ramos and his team who moved heaven and earth so the book could be presented on the occasion of the European and International Year of People with Disability in 2003.



1. PRESENTATION 1.1. Background

Since its creation, one of the major areas of concern of Club of Rome has been the dignity of all human beings and the quality of life of the inhabitants of this Planet. The Club has always known that the future of Humankind will depend on our peaceful coexistence, in a world where the differences between the members of our large human family are accepted, and where no human being is excluded or limited because of his circumstances or abilities. Thus, when at the end of the nineteen nineties, the then Chairman of the Club of Rome, Ricardo Díaz Hochleitner, invited the Organización Nacional de Ciegos de España (ONCE – the Spanish National Organisation of the Blind) to collaborate with the Club via its Foundation, he stressed how decisive it would be for human progress to make disability visible, bringing it out into the open, and making it possible for people with disability to become integrated members of every aspect of our economic, cultural and social life. His invitation made it possible for the first time for a person with a severe visual disability, Rafael de Lorenzo, to lead the Club in a debate about the new horizons for people with disability in the modern world, and to consider the social values and paradigms that will be necessary to assist people with disability in their efforts to become an integral part of society. From the ensuing debate and dialogues, in which the sensitivity of Ricardo Díaz Hochleitner and the willingness of the members of the Executive Committee to become involved were always evident, it was almost a matter of course that, on the occasion of the annual meeting of the Club of Rome in Vienna in November 1999, Rafael de Lorenzo’s proposal to draw up a report on The Future of People with Disability would receive such a warm welcome. In his address to the Club, the essential content of which has been included in this report in the section entitled Expectations for New Times, he suggested that a Report be drawn up along the lines of others drafted for the Club of Rome, such as Aurelio Peccei’s work on Human Quality, which examines technological advances and other major changes that have taken place in recent years. Rafael de Lorenzo proposed to continue to show how these changes should not be allowed to affect the essential message implicit in those earlier works, where the principle theme was the preservation of human dignity, the defence of human rights and the promotion of human development in an environment of solidarity. Taking into account the advances and new issues that conform today’s social


context, the Report in question would aim to contribute to the development of new values and propose new ways for inter-personal cooperation. Its objectives are to promote better understanding of how people interact and forward the idea that today, through cooperation, people can find mutual support and understanding. It would seek to convince society that diversity can be an instrument for development and a way to build a more just social and economic order, without sacrificing efficiency. Likewise, the Report would forward proposals for preventing discrimination and exclusion, and emphasise that the future we seek, where people with disability will be full participants in all aspects of society, must be based on a new paradigm that defends and promotes human diversity. In order to achieve these objectives, it was proposed from the outset that the Report be structured in four major thematic sections, as follows: 1) An overview of the situation of people with disability in today’s society and their integration in the different aspects of daily life: Special emphasis would be placed on the fact that these circumstances vary significantly from the economies and societies of less advanced countries to those which are relatively more developed. This initial overview should, likewise, emphasise that while international bodies have made recommendations to promote the inclusion of people with disability in society, these recommendations are not reflected in specific policies or practices. An initial inventory of opportunities for the integration of people with disability in the economic and social order, specifying solutions and tools, some of which are already available and others that will be developed once the adequate policies and programmes to make this integration effective have been defined. In this section, special attention is paid to integration in the areas of education and labour, and to participation in the social and political spheres. A reference to the importance of incorporating disability into collective life, with an analysis of the implications of this shift that will require developing new values to promote cooperation, while establishing that competition and social cohesion are not incompatible. A final section dedicated to mapping the paths for the future of mankind based on solidarity, as invoked in our Objectives. This section includes proposals which may help prevent the polarisation of society with the creation of first and second class citizens, encourage cooperation, facilitate the distribution of scientific and medical advances throughout the world and uphold the dignity and quality of human life.





In view of the foregoing, the Club of Rome asked Rafael de Lorenzo to prepare the report in question. A meeting, attended by Ricardo Díez Hochleitner, then Chairman of the Club of Rome, Uwe Moeller, General Secretary of the Club and his assistant, Helmut Trumpfheller, was held in Madrid in November 2000 to establish the timetable and methodologies. The General Secretary of the Club issued a series of considerations, among which we should like to emphasise the consideration that while the report should be made from the standpoint of disability, it should also include broader horizons. This focus does not mean to imply that the problems of people with disability should be confused with those affecting other groups at risk of exclusion, but that the social integration of all groups of people can only enrich our world. In this sense, the report endeavours to defend the right to equality, and promote a spirit of solidarity with all groups of people. Finally, The Club of Rome’s General Assembly held in Ankara at the end of October, 2002 approved the draft report. The final version of the text thus includes the suggestions that arose during the Assembly’s debate and in discussions with members of the Executive Committee, Patrick M. Leidtke and Keith D. Suter. These changes were incorporated at the beginning of the following year, and the revised version of the report was ready for publication in the spring of 2003. 1.2. Methodology

The Director of the Report made the following proposals as guidelines for the Report: 1º) a group of international experts would be consulted concerning the subjects forming the backbone of the Report. These experts would be asked to provide written contributions in their areas of expertise, and this material would then be incorporated into the report; once the Draft of the Report had been drawn up it should be reviewed by the experts designated by the Club of Rome and by other professionals, whose suggestions and contributions would be used to improve and fine tune the text; and by counting on appropriate collaborations, the real situation of disability in the different countries throughout the world should be documented by making use, especially, of the statistics provided by international organisations and agencies.



At the same time, a Technical Committee was set up. This committee was responsible for specific tasks involved in compiling and writing the Report and for integrating all the different contributions received. The Executive Committee has played a decisive role in supporting the work of the Director of the Report.




When, in the autumn of 1999, the Club of Rome accepted Ricardo Díez Hochleitner’s suggestion to commission a Report on The Future of People with Disability it was aware that this subject had a growing importance in the world today, for two reasons. In the first place, because people with disability are desperately in need of special consideration to prevent social exclusion. People with disability have every right to demand that an end be put to discrimination and to demand the necessary support to enable them to make the most of their abilities and knowledge, and to contribute, along with the rest of society, to human development. In the second place, because there is a tendency, due to scientific and medical advances, towards an ever-larger aging population, and this phenomenon will give rise to a different kind of disability. The disabilities of the aged can also lead to exclusion and may limit the possibilities for the aged to continue to lead socially active lives. These arguments are based on the fact that there is a growing number of people who do accept that their personal potential should be limited by their circumstances: To this end, the Report must be a testimony, as a paradigm of what men and women can do, of the efforts being made to help people overcome, both individually and collectively, their disabilities. Likewise, it must bear testimony to the scientific and medical advances and technological developments supporting these efforts. Moreover, the Report should emphasise the perception of disability as a problem that can be approached and solved; it should stress the policies implemented in the social, economic and technological spheres aimed at promoting inclusion. Therefore, to speak of disability and the future of people with disability specifically means to insist on arguments against a dual track society and against indifference, in favour of a search for innovative, far reaching solutions. These solutions should serve the needs of the disabled community and of other collectives at risk of exclusion, as large numbers of the world’s population suffer from the effects of social exclusion. The issue of Disability is included in many charters on human rights and it is a point of reference for inclusive societies. However, there is a gap between the official declarations and resolutions made by international organisations, and the application of these principles and standards in daily life. This only highlights that not enough is being done to counteract the problem of exclusion. This, at the end of the day, only limits the potential of society as a whole, wasting, as it does, the capabilities and dreams of people who are often excluded simply because nothing is done to put human advances and resources at the service of everyone. Finally, modern society must develop a new paradigm that accepts disability as a form of diversity, and that promotes cooperation by applying technical advances to improve the standard of living for all, in a spirit of solidarity. It should show how human will, rather than scientific advances or standards, can give these people back their hopes and dreams, providing an environment propitious for personal development and integration.




This Report ultimately strives to broaden the perspectives of human quality, using the phenomenon of disability as a starting point, and intends to show how the integration of people with disability can enhance the potential of society as a whole. Thus, the Report is based on the principles of transforming humanism, geared towards the development of Humankind. Essential to development are the principles of equality, solidarity and cooperation, and these can only be established through training, employment and full participation in society. In keeping with these ideas, the Report was drawn up in the understanding that to make these principles reality, it is necessary, in the first instance, to take an inventory of how people with disability live today in the different parts of the world. Once this assessment is made, it will be possible to act on the external factors that limit the quality of people’s lives and, more specifically, on the internal limits imposed by cultural perceptions, traditions and values that must be transformed. The authors believed it would be more constructive to formulate proposals and suggestions for debate, rather than to provide a mere quantitative or geographic description of the current situation of disability in the world. However, for a meaningful debate to take place, it is necessary to truly understand the reality of people with disability, depending on the type of disability they experience and the context of their socio-economic circumstances and of the technical developments that affect them. It is in this context that the concepts of design for all and universal access are introduced, with the proviso that these, in and of themselves, are not sufficient to overcome inequality or to guarantee inclusion. The Report includes contribute to our interaction, and it disability can make awareness. a reflection on how diversity can enrich society as it can collective intelligence through shared learning and emphasises the specific contribution that people with to social development and the development of human

4. THE PREMISES OF THE REPORT For analysis of the current situation confronting people with disability, whenever available, the Report drew on proven statistical data. The review was based on the study of international regulations and recommendations and led to the conclusion that, in general, the problem has been well diagnosed, but that the application of specific solutions has been poorly attended to. Furthermore, given the different situations and the gaps between mainstream society and underprivileged groups, it is not possible to make generalisations. Likewise, in accordance with the objectives of the Club to produce a document that focuses on disability but that takes a wider stance, the Report considers the importance of conserving, and taking advantage of human diversity. The


objective of this reflection is to increase awareness of the need for solidarity, and to strengthen commitments for the defence of equality and mutual support of people throughout the World. The Report also makes reference to the economic aspects that have an impact on the lives of people with disability, highlighting those affecting certain groups in danger of exclusion, with special mention of the elderly. This, however, does not imply that we are equating disability and old age, or the disabled community with other collectives at risk of exclusion from our social and production systems. To these considerations we should add that, any Report undertaken under the auspices of the Club of Rome, should of necessity reconsider the historical context we are living in. We should clarify our commitments to Nature, and the commitments future generations will have to take on. This means it is necessary to think about the material resources we are leaving, especially with regard to the cultural and moral values we are passing on to the next generation. Therefore, it is always necessary to bear in mind the problems of poverty and its sequel of social exclusion. Issues affecting natural resources must be considered, along with the notions of the governance and cohesion of complex and interconnected systems, although these are not explicitly developed in the pages of this Report. Reference must also be made to the concept of sustainability, especially its newer dimensions, which so directly affect human dignity and quality of life, the development of new awareness, the construction of networks of cooperation and the processes of collective learning. Likewise, in a Report of this kind, attention must be paid to the trends detected in consumer habits, cultural manifestations, lifestyles, family models, leisure, work and ways of participating in social and political life. Uncertainties should be pointed out together with the opportunities that are opening up for everyone, provided that all people can be integrated socially and be the protagonists of their own lives and participate to the full in their communities. It is, therefore, necessary to consider the maelstrom of changes that the population is living through, and to identify which of these are vital to the process we are advocating. It is especially important to identify those that have a positive effect on solidarity and equality and those that, to the contrary, contribute to human unrest. The Report, thus, examines disability from all of these angles, and from the perspective of the problems and the challenges facing the human race. However, the Report also hopes to provide some insight into how we can usher in a new era, based on the ethics of solidarity and respect for diversity, where it will no longer be necessary to clamour for a change in the values required to build and live in a world that embraces all people, no matter what their circumstances.


5. THE CONTENT OF THE REPORT After a brief presentation and the introductory considerations outlined in this first chapter, the content of the Report is organised in four main sections. The second chapter is headed “Disability and the new dilemmas for Humanity”. It contains a reflection on the anxieties and expectations with which Humanity contemplates the future. A synthesis is made of the situation of people with disability throughout the world today, followed by a discussion of their hopes and expectations in the context of their particular circumstances, factors that vary depending on their economic, social and cultural status. A review is made of the long road already travelled by people with disability to achieve full recognition of their rights, with an analysis of the way society perceives disability; the statistical and legal realities of people with disability throughout the world are discussed, along with national policies on disability and the way that social changes, and the challenges brought about by these changes, affect people with disability. The third chapter, headed “The opportunities which exist and which may be created”, is an examination of the different areas that are relevant to the participation of people with disability (education, employment, social security and protection, technological change and scientific and medical advances, leisure and culture activities, social life and participation in development). It examines various solutions and instruments which are already available in our societies and which could be better distributed if the policies and programmes to make them effective were put into practice. The fourth chapter, “The quality of supportive life”, is a reflection on what the experiences of people with disability can contribute to society as a whole, especially with regard to the development of new values such as solidarity, cooperation and equality. These experiences can be put to profitable use to help construct a transforming humanism that will spur the development of Humankind and create a society where competition is not in conflict with cohesion. An in-depth examination is conducted of “social capital” and its effects, and an analysis is made of how social cooperation can help establish a more dignified society in which everyone has the right to full citizenship. The report concludes with the fifth and final chapter in which an examination is made of the road still left before us if we are to build a future in which solidarity, and acceptance and respect for diversity form the basis of a more equal and just social order. A series of proposals are made for future debate and actions in the area of human development and disability.



There is sufficient historical evidence that human development does not necessarily go hand in glove with material progress. Even in times of economic expansion, there are people who are unable to take part in society’s prosperity. People with disability are generally among this group, and their desires and hopes to take part on equal footing clash with the circumstances they are forced to live under. People with disability have already come a long way towards achieving full citizenship, in a process that has included the efforts of their families, the associations that represent them, professionals and institutions. However, there are still many physical and social barriers that prevent their full participation in society. Besides an indepth analysis of the way in which society looks at disability, this Report provides a review of the statistics that quantify disability throughout the world, and looks at the legal realities that affect people with disability, different national policies on disability and the way that social changes and the challenges these changes bring about affect the lives of people with disability.

1. EXPECTATIONS AND UNCERTAINTIES FOR THE NEW TIMES In light of the principles underpinning current thinking on human development, and in compliance with the premises laid down for the Report, it is necessary from the outset to state that if we are to encourage integration, and if a multicultural society is to truly flourish, it is not sufficient to assume that the recognition of differences and the creative potential of diversity will automatically be embraced as a human value, if we fail to examine all the facets involved. Very often differences between people do not merely arise from cultural differences or differences in beliefs, or from different levels of income and social standing, but from other inequalities which have their origin in a person’s functional capabilities and development. This means that the risk of creating first and second class citizens stems not only from different levels of material resources, but that discrimination may also ensue from the barriers erected by our social and cultural habits and production systems that can exclude people with different personal capabilities. And exclusion has a double negative impact: On the one hand, it diminishes the people who are its victims, who may react by limiting their own expectations of life. However, on the other, it deprives society itself, which is


unable to tap the potential of some of its members, in this case of people who live with some kind of sensorial or mental limitation or who, at the end of their lives, find that their faculties have deteriorated. Concerns of this nature are not new to the Club of Rome. It has always held that sustainable development is not enough, but rather that it must play an integral role in a human development which permits each person to reach his/her highest potential in accordance with his/her capabilities. Sustainable development must also eradicate the different risks of exclusion. As Aurelio Peccei pointed out in Human Quality, the evolution or involution of existing and latent human capabilities does not have to occur simultaneously with material progress. It should not, therefore, seem strange that even in periods of unprecedented economic expansion there are people who are unable to find a way to take part in this prosperity. Among these people are those who suffer from serious disabilities and who want to work but who cannot find jobs. What is a lost opportunity for them is also a wasted opportunity for the rest of the world, and solving this conundrum is a challenge that goes beyond the merely economic aspects of the problem. As Ricardo Díez Hochleitner pointed out in his Spanish extension of the aforementioned report, the evolution of Human Quality requires not only a broad vision of the problem as a whole, but also of its moral and ethical connotations and a permanent reference to the values of liberty, equality and justice. These are references that, as Aurelio Peccei pointed out in Testimony on the future, have their key manifestation in the quality of people, their capacity to face extraordinary challenges, and their ability to make the most of the equally extraordinary opportunities of their times. The Club of Rome, while never losing sight of this human perspective, has been analysing the consequences of unlimited growth and technological change, the difficulty in governing ever more complex systems, new economic and financial systems and the limits of social cohesion in human development. These consequences, together with those derived from the revolution we are witnessing in information processing and in market connectivity, are increasing the risks of polarising society and opening the door to new forms of exclusion. New social patterns are emerging in response to these changes, while patterns that do not comply with models defined by economic productivity and profitability are being discarded. In this process, however, Humanity is becoming aware that it is impossible for Man to maintain a relationship with Nature that ignores these limits and their ultimate consequences. We have, furthermore, begun to learn that problems are interrelated and that overpopulation and the scarcity of educational and material resources are not isolated phenomena. We are beginning to see that the consequences for future generations may be more catastrophic than they appear now, and issues like conserving bio-diversity have, accordingly, become important. However, humankind has yet to realise that, in this confusion where


progress and underdevelopment, opulence and abject poverty live side by side, no system of values is being developed to help assimilate technological advances, so they can favour everyone. Solidarity between people is lacking as well, as it is only by sharing wealth and opportunities that we can forge the axis of sustainable behaviour patterns. It is absolutely necessary to adopt values that promote the idea that equality in diversity is possible, and that equality must be a part of all aspects of life. It is only with this conviction that we will be able to take advantage of the spiritual potential that all members of society have to offer from the time they are born to the time of that they die, whatever their human condition may be. For this reason, the new dilemmas facing Humanity are not only technical and economic, but they are interpersonal as well. Humanity must seek to discover “the other” and share with each other a common destiny enriched by the differences of each individual. It is of paramount importance that we re-think the model of development we want to follow. We have just reached the end of a century characterised by enormous social and technological advances that have ushered in improvements in communications between individuals and between societies. These changes have been so rapid that it is almost impossible to assimilate them. At the same time, the foundations have been laid to create a new world order based on global dimensions, on-going interaction and the internationalisation of fundamental factors in our traditional models of political, social and economic organisations. These advances have led to a growth in activity and consumption heretofore unimaginable. This growth, however, has not been socially neutral. It has brought with it negative and undesirable consequences such as imbalances between the different parts of the world, environmental tensions, social inequality, cultural shock and conflicts between the values of different societies and groups. These confrontations have become all the more extreme following the tragedy of 9-11, although this has, unfortunately, not been the only recent drama. Thus, while it is true that economic and technological growth has allowed unprecedented levels of well-being which have benefited broad social layers, it is also true that, in general terms, it has led to a polarisation of the human population. While some people live in prosperous, developed societies, others live in abject poverty and are victims of all manner of discrimination. More than 1,000 million people are excluded from today’s prosperity and there are uncountable regional and local conflicts that are rooted in poverty and despair for the future. This situation is not confined to the countries of the third World. Some 15% of the population of the industrialised world lives below the poverty line. This situation is all the more contradictory if we bear in mind that the economic and social model of the post-war years was based on the pursuit of economic growth, harmonious social development, full employment and the elimination of social conflicts through the implementation of the Welfare State. The


philosophical basis for this model was the search for equality, the practice of solidarity and the exercise of a regulatory power by the State through justice, equality and by developing in the citizens a sense of belonging to a society that shared cultural values, and whose purpose was to promote integration and happiness. Today’s challenges are globalisation, interdependence, diversity and uncertainty. However, we must be careful not to speak of globalisation or diversity in abstract terms, but with reference to people, human values, the development of individuals as subjects of this progress and fair and balanced growth. Only then will we be able to choose the paths of progress and solidarity at the crossroads where we stand now. These are the paths that we will have to walk if we wish to recover our belief that men and women can shape their own destinies. At this crossroads, we must understand that differences between people are to be valued, and that they must be integrated into the weave of society. Here, Humanity must ponder which way to go to avoid leaving underprivileged people in the backwaters of history. However, here, we have the opportunity of making the right choice, by relying on our technical knowledge and tools. Furthermore, we have learned that mechanical repetition of the past is no guarantee of success in the future. We know that all processes must be governed from the perspective of the risks involved in any change, and although there are methodologies that can be used to change directions, there is no guarantee that once chosen the path we take is the right one. Another factor in our favour is that progress in medicine and technology is so spectacular and effective that, if new discoveries can be applied, many natural disabilities can be overcome. Once this is possible, the consequences of illness and poverty can be halted, and the most varied diversities can be effectively integrated. Developments in management techniques and information processing will make it possible for all citizens to make significant contributions with their knowledge and skills. In the case of some disabilities, this will mean using technical equipment and instruments that complement the person's capabilities to communicate or execute actions that will make it possible for him to take part actively in social and economic life. When asked to identify their gravest concerns, citizens throughout the world named human cruelty which, when witnessed, is seen with repulsion, natural disasters which remind us of the frailty of our social and economic structures and unstable employment, or the fear of being unable to earn a living. Our societies are organised around employment and useful occupations, and many of our moral values and principles are based on the relationship between individuals and productive activities. Having a job means carrying out a socially valued role, being recognised as an individual with rights and obligations, being at the centre of the virtuous circle of social well-being, whereas being unemployed brings with it discrimination and the risk of social exclusion.


While the value we place on employment is undeniable, we must not forget that there are people whose physical or mental limitations condition their participation in our normal production processes where the objective is to maximise productivity and minimise labour costs to achieve maximum profitability. We must adopt new values that place Man, with his needs, differences and expectations in the centre of these processes, as opposed to our system that is driven by the value of maximum economic profit. This is coherent with the ideas of human rights and diversity which appear in other sections of this Report. Certain activities, considered today as marginal work, should be given the “value” they deserve, although not necessarily according to the logic of the market. People with disability can provide services to the community which are not subject to the laws of supply and demand, (business consultancy, training, telephone help desks, Internet, making web-sites...). Employment should be adapted to suit the abilities of people with disabilities, rather than focusing exclusively on production levels that are unattainable for many people. We must restore the human values inherent in work, and work must be seen as a vehicle for people to develop relationships with others, independently of each one’s capabilities or social origins. Work must become the vehicle that places the new opportunities made possible through economic development within the reach of all members of society. In this context, the potential of the new technologies, especially communications and information technologies, becomes a tool with incalculable power that should be used to augment the well-being of all members of society. In the process, however, we should be very careful not to create first and second citizens. In view of the foregoing, it is easy to see how a dual track society can be created, and how exclusion occurs when a person’s disability conditions his existence. It is appropriate at this time, to make explicit reference to a large section of our communities, people with disability, who comprise approximately ten percent of the world’s population. Society continues to turn its back on this collective, and the expectations of people with disability of becoming fully integrated members, both in developed and underdeveloped societies, continues to be very low. Thirty years after the United Nation’s vigorous plans to help improve policies and programmes for the prevention of, and attention to disability and rehabilitation and integration of people with disability everywhere, it is still necessary to make our voices heard in our demand for fair and supportive treatment for this sector. Standards for integration and practices to prevent discrimination must be adopted, so that people with disability the world over can enjoy all the opportunities open to other members of society. Modern societies are more than ever aware of this situation, and many countries have included the eradication of discrimination and the promotion of integration in their constitutions and legislations. However, these are formal aspects that do not necessarily contribute to real and effective integration. The inability of the Public Authorities and of the different social groups to promote


effective integration is a manifestation of the social inefficiency of the systems we have created. It is a clear example of how the moral values and standards we use in our public discourse and rhetoric are not those we apply in our business affairs or our daily lives. The development of a cohesive and inclusive society requires the effective and real application of the principles of equality and solidarity as the clearest expression of the values that sustain the human condition. However, it is not just a case of achieving the formal recognition of these principles and enshrining them in the legal frameworks of our societies. Rather, it is a question of ensuring that these principles lie at the very root of our daily practices and our moral sense of living together. It is a question of promoting attitudes, values and practices that will provide people with disability access to all the circles of activities, occupations, rights and obligations that are part of the life of any member of society. Many people acclaimed the European Parliament when it declared that the exclusion and discrimination of people with disability was a violation of universal human rights. Respect for, and the promotion of, human rights and human diversity have been traditional characteristics of the societies of the most prosperous areas in the world, and form an essential part of the common values of their cultures. People with disability must be made to feel that they can exercise the right to be themselves and to be so shoulder to shoulder with their fellow citizens. For this to happen it is necessary to stimulate a spirit of initiative and to banish attitudes based on resignation and the acceptance of the limitations that our social condition, disability or old age may determine. Values, such as mutual support for each other and individual freedom, must be adopted so we can build new horizons based on diversity, so that all members of society can feel themselves to be unique, and yet a part of a supportive society. To leave these values as a legacy for future generations is as important as passing on an unspoilt and unthreatened environment. Such a legacy, based on fraternity, will provide a new spirit to promote substantial changes in our daily attitudes and practices. To achieve this goal, we must first be aware of the reasons for the exclusion that many people with disability experience and that feeds a sense of helplessness. We must have a clear idea of how people with disability are treated differently with regards to education, work and leisure activities in different societies and cultures. Likewise, we must be aware of what technology can do to readjust the balance of these differences, what policies can be implemented to nurture the expectations of all citizens, how services should be organised and what commitments should be taken on by the Public Administrations and private organisations when confronting the demands of a population whose life expectancy far exceeds even the wildest dreams of industrial and rural civilisations of the past. All of this requires an analysis of the current situation so we can identify opportunities and threats. To do this we need the courage to imagine in the first place, and to go forwards in the


second, towards a new model of society that, rather than valuing and promoting uniformity, is based on the dignity of each individual and her right to control her own life. It is the responsibility of all of us to take part in, and guide this process, but we should remember that the Public Authorities have a specific responsibility to this end. An effort must be made to explore the new possibilities open to us. Technological developments are providing new opportunities that must be oriented towards strengthening the values that will lead to a just society. This goal is well within our reach, and we should be optimistic about the efforts that have already been made by many people with disability, and the dedication of the many people who are committed to the process of integration. This work is already bearing fruits. Thus, the Club of Rome's contributions must include a new collective reflection on the future of Humanity and, specifically, on human development and people with disability. This reflection cannot ignore the Gordian knots invoked by Federico Mayor and whose undoing holds the key to the future. The knots are tight and, in some cases, tighter for those with sensorial, motor or mental disabilities. Yet, a way will be found to undo them, if we succeed in putting all our knowledge and technical skill behind the pursuit of a new human frontier of integration for all those who do not choose to be excluded. We must also bear in mind that technical know-how and economic capacity will be insufficient in and of themselves to help advance towards this future. As Aurelio Peccei and Daisaku Ikeda point out in Before it's too late, the greatest problems of our day are still spiritual and ethical ones, and cannot be solved merely by applying material and cognitive means. These problems pulsate in the innermost being of every person. It is only when we renew our values that we will be able to aspire to an understanding of these new challenges and to face them with the serene hope that comes from knowing that if we better ourselves, recognising ourselves in all those who surround us, we will be capable of overcoming the threats of the future. Only thus will we be able to free ourselves from these knots of exclusion and discrimination which prevent many people with disability from becoming part of active life. Only thus will we bring about their complete integration. Hence, any study, any action undertaken in an attempt to achieve these advances, must be based on promoting the development of each and every person. The most significant aspect of this human adventure will be the quality of the actors. However, the only way to ensure quality, regardless of equal opportunities (which would, at least, be something), is to first witness the birth of a new humanism that will ignite a spiritual rebirth inside all of us, kindled by our capacity to dialogue with people who are different from ourselves. This will be a new humanism from which no one will be excluded and in which disability and other expressions of human diversity, with their challenges and contributions, will enrich the quality, capacities and resources of all of society.


2. THE EXPECTATIONS OF PEOPLE WITH DISABILITY 2.1. The realities of disability: A portrait in grey

In recent decades, many of the obstacles that have long barred the social integration of people with disability and other minorities have been overcome, in a process that has drawn together the efforts not only of the protagonists of these changes, but of their families, the associations that represent them and specialised professional institutions as well. Yet there is no doubt that social barriers and physical obstacles still limit the participation of people with disability in today’s society. People with disability have far fewer opportunities to lead a fulfilled life, because they continue to face difficulties in acquiring such fundamental social tools as an education or a job. Many are excluded from vast areas of society, finding them utterly inaccessible because of their impairments. However, what we tend to forget is that the greatest barrier to integration is within our own minds. Frequently, when we think of people with disability we merely focus on the disability, the element that makes the person different. We conjure a generalisation based on this single aspect, and ignore the other characteristics, circumstances and qualities that make up the person. With this mentality, it is easy to forget that all members of society have the same value and the same rights. Overcoming this barrier within ourselves will help promote a fairer society, where primary elements are fairly distributed. These primary elements include freedom of speech, freedom of movement and the freedom to choose a profession, but the most important of them, beyond any doubt, is self-respect. Fully exercising the right to freedom of movement and the right to freely access all social spaces is, to a certain extent, the key to developing a sense of self-respect and personal fulfilment. We must ask ourselves whether a society that still harbours institutions and situations that are a source of humiliation for some of its members can be considered fair. Social exclusion is a reality even in the most developed societies, where economic progress and formal democratic development are unable to guarantee social justice. The European Disability Forum (EDF) states that, although not all citizens with disability of the European Union are socially excluded, the systematic discrimination they suffer and the social, educational and labour barriers they must overcome mean they are much more vulnerable to social exclusion. Together with social exclusion come poverty, both in economic and social terms, and isolation, of the person with disability and her family. Various studies carried out in Europe have identified three factors that raise the risks of social vulnerability: 1)Low income, related to insufficiencies in the social welfare system


and difficulties in obtaining employment. 2)Additional costs related to disability. 3)Barriers erected by discrimination and exclusion from social services or activities. Furthermore, the correlation between a person’s level of education and training and social exclusion is well known. Once again, the place where we live, accessibility to infrastructures, priorities of local, regional and national policies are external factors that all help determine whether a person with disability will be able to receive a truly inclusive education, with all the advantages it entails, or whether he/she will be condemned to the circuits of discrimination where opportunities are reduced for all persons who have disabilities.
The ideal of reason in the social world is not, therefore, welfare, but justice... to decide what is fair does not, then, depend on individual characteristics, but requires the discovery of universally extendable minima, without which human beings find it difficult to live a truly human life. The ideals of welfare are questions of individual options. The ideals of justice, on the other hand, are requirements that society should satisfy for each of its members, unless it is to fall below the minimum limits of morality. Adela Cortina, Professor of Ethics and Political Philosophy in the University of Valencia (Spain)

All citizens should be able to interact with their environment independently and under equal conditions. The largest number of people possible should be able to use a building, a public space or means of transport unaided by others, and all public installations should be designed and built to make this possible. It is obvious that when an environment is designed with the concepts of universal access and design for all, it serves the needs of the entire population, and not only those of people with disability who might otherwise be its principle users. An accessible lift has enhanced lighting and is larger, its acoustic information system gives complementary information to everyone, not only to people with impaired sight and, more importantly, it is used mostly by people who have no disability at all. Therefore, why do we still have architectural barriers? Why do we continue to design environments, cities and buildings without thinking of those, ninety percent of the population, who have shown that they prefer designs that are accessible and more comfortable for all of us? An accessible place is a place that is easy to use. It is a place of convergence, a meeting point, because it is a place we can all share. Creating environments that can be shared by all enhances competition. In our new knowledge-based society, pooling expertise, the product of participation, the sum of the capacities and potential of the general public all generate value. However, accessibility goes beyond access to the built environment. We need to promote a less visible, yet more complex type of accessibility to all the products and information systems available in society, and it is in this context that the concept of design for becomes most meaningful. When a design is


made for persons with severe disabilities, everybody benefits because the system will be easier for everyone to use. Systems and products designed with these criteria are simpler to learn to use, and they generate a lower rate of error. All human beings generally seek the greatest efficiency with the lowest effort, and these kinds of designs respond to this desire.
Society creates obstacles when it is not adjusted to the diversity of all its members. Towards a society for everyone: long term strategy for promoting the application of the World Programme of Action Concerning Disabled Persons to the year 2000 and following.

However, experience shows that for the concept of design for all to become the norm, it is not enough to improve the quality and usability of products. It is also necessary to make the market more sensitive, to improve standardisation processes and to pass legislation making it mandatory for all products and services to take into account the requirements of all the members of the general public. But there is more to it than this. Current public opinion calls for a more ecological society, where we all form part of an open ecosystem that places equal value on all its elements, considering each one essential to the survival of the system. A society with room for everyone, that respects the environment and its inhabitants, one that is sensitive to the requirements of the elderly, of pregnant women, of the sick, of immigrants who do not know the language or the culture, of persons who, for whatever reason, find themselves in a vulnerable position is a truly integrating society. In view of the foregoing, we should ask ourselves whether we have really advanced towards the restitution of the rights of all groups; whether we are really moving towards a more decent society which will treat all its members with human dignity. 2.2. The roads towards a modern society

Accepting the idea of impairment as something that can be prevented or modified has been a giant step towards a modern society with new attitudes towards disability. Today, we have at our disposal mechanisms to help overcome human and social problems; we have the knowledge and skills to change past problems, and we attempt to modify inappropriate habits and customs. Vaccination and prevention campaigns geared towards eradicating certain disabilities have made substantial inroads, while other measures help palliate the disabling effects of an impairment. These have all contributed to gradually enlarging the horizons of social integration. However, even at the beginning of the 21st Century the figures speak for themselves and show just how much we still have to do in this field. Bearing in mind that the socio-economic conditions of the less-favoured groups significantly increase their risk of suffering from a impairment, how can we


make advances in prevention when fifteen percent of the population in industrialised countries live below the poverty line or when, of the 4,600 million inhabitants of the developing world, almost 1,000 million have no access to drinking water, and 2,400 million have no access to basic health services? What can we do about disability when, according to the conservative figures given by Kevin Bales, there are 27 million people living in slavery throughout the world? How can we broaden the horizons of integration when there are still so many countries in the world where human rights are ignored?

The principle of equal rights for people with and without disability implies that the needs of each and every individual are of equal importance, that these needs must be made the basis for the planning of societies, and that resources must be employed in such a way as to ensure, for every individual, equal opportunities for participation. Nevertheless, when we relate this statement to the situation of disabled people around the world, it becomes extremely relevant. The needs of disabled people are not taken into account in the "planning of societies" and the resources are not employed to ensure "equal opportunities for participation". If I, after thirty years of work in the international disability field, were to choose one word to describe the situation of disabled people, I would without any hesitation say "exclusion". By international standards of classification there are at least 500 million disabled people in the world. Due to several factors, the number is expected to rise. Millions and millions of disabled people in developing countries lack access to education, have poor health conditions, are poverty stricken and socially isolated. It is a well-known fact that there is a close link between disability and poverty. Disability leads to poverty; poverty leads to disability. Beng Lindqvist, Special Rapporteur of the United Nations Commission for Social Development on Disability.

Just as poverty causes disability, disability causes poverty. Data from the '90's show that the average family income is significantly lower if the main breadwinner suffers from a disability, because people with disability are generally under-employed, and must content themselves with precarious labour. In the United Kingdom it has been shown that there are proportionally fewer people with disability than non-disabled people who are home owners, and that people with disability are more likely to be poor when they reach old age. Sixteen percent of all people with disability in the United Kingdom are poor, and this percentage increases to fifty percent if the statistics take into account not only the level of income, but also the additional expenses incurred in connection with the disability. The risk of unemployment continues to be two or three times higher for people with disability compared to non-disabled people, and all studies carried out to date demonstrate the significant role played by employment in preventing the risk of social exclusion, and all its implications for people with disability. Throughout this long journey, which is still far from its final destination, certain events have played a crucial role:


Although not all persons suffering from disabilities have always been the victims of discrimination (the war-wounded have generally been an exception), traditionally the physically handicapped, the mutilated, the blind or people with mental impairments were relegated to marginal social positions and poverty. It was only after the ideas of the Enlightenment started to take hold, and the first modern democracies were born that this situation began to be considered unfair. The disabled were forever socially under-age, in contrast with other people who came of age and gained full rights as citizens. This imbalance eventually began to be seen as unsustainable. The Age of Enlightenment assigned a new role to the poor and the socially unproductive and offered people with disability assistance, although not full citizen’s rights. With the arrival of our modern Social Security systems, the invalid became the object of protection and began to receive social and healthcare as well. The period between the Wars brought with it another paradigm, the paradigm of rehabilitation. This was a significant change that gave people with disability a new role. They became patients or “clients” receiving medical assistance and treatment to correct or modify their physical, mental or sensorial state. It was during this period that more rehabilitation services became available for people with disability. The paradigm of rehabilitation helped overcome the traditional focus of disability centred on the opposition between the “abled” and the “disabled”, the capable and the incapable. It was the beginning of the modern approach, where impairment was seen as something that could be modified, requiring a multi-professional therapeutic and rehabilitation approach. This move forward did not mean that earlier models had been supplanted, but rather that they co-existed; and although innovative ideas took hold, fundamentally in professional circles, the social environment continued to be firmly anchored in obsolete notions. An example of the scope of the paradigm of rehabilitation is reflected in the attitudes of the International Classification of Impairments, Disabilities and Handicaps proposed by the WHO in 1980. For the first time, this system makes a much more specific distinction between the organic situation, the functional capacity and the relational problem, and evaluates these factors from the perspective of the paradigm of independent living. This change unquestionably produced a revolution in the world of disability. The growth of the movement that advocates independent living for people with disability has meant leaving behind the rehabilitation framework and beginning to demonstrate that people with disability can manage their own independent lives away from medical institutions and services. This movement has begun to take hold in Europe, and has prompted new focuses and concepts that have clear social repercussions. Among these is the principle of mainstreaming, proposed by professionals working with people with mental impairments, that forwards the idea that these patients have the right to be considered and


treated in the same way as everyone else. The term “mainstreaming”, however, has been difficult to define, possibly because of the ambivalence of the word itself. In the field of mental impairments, in the United States the new "paradigm of the mentally retarded" has had, and continues to have, a great deal of force. Although it shares certain positions with the principle of mainstreaming, over the years, it has spurred the development of an innovative methodological body for understanding this impairment. The attempt to integrate people with disability into the mainstream of all aspects of life led to dismantling special education systems in the USA. In Europe, mainstreaming in education has been considered, and is a measure that became more widely accepted with the paradigm of independent living.
Mainstreaming does not solve all the problems but if it is applied well it does not create additional barriers and it solves many problems. The better the mainstreaming, the fewer special services are required, although certain essential services will always be required for the people with disability who cannot take advantage of mainstreaming. Stefan Trömmel, Director of the European Disability Forum.

The most significant feature of this movement is that it comes from the bottom up with the primary aim of de-institutionalising people with disability. People with disability want to define the kind of integration they desire, identify the professional services they consider necessary and have the power to organise their own programmes. This movement arose as a natural extension of the demands and conquests of other minorities in North America, and it is one more aspect of the fight for human rights. It can only be understood in this context, which is where it currently continues to thrive. The period between the Wars also gave rise to the science of Ergonomics with its systematic focus on the relationship between man and his workplace and man and his environment. Ergonomics has made a significant contribution to the modern design of space and aids for people with disability, and has been a major influence behind the concept of adapting work to man. This shift in focus has been influential in helping people with disability gain employment. The congress on Ergonomics and Disability held in 1982 in Lorient (France) coined the concept of “situation disability”, defined as the lack of harmony between man and his environment, where both elements are seen to either attenuate or accentuate this imbalance. If disability presents an obstacle to resolving a task, and if there are technologies that can either help overcome these obstacles, or create new ones, disability can be conceived of as a dialectic, or a changing concept. It is clear that obstacles can be eliminated or minimised by designing environments that are compatible with the tasks to be carried out by a specific person. The concept of Ergonomics proposes that the environment and the activities carried out in it be adapted to the person, and not the other way around, as has been the norm to date.


This change in thinking, where the environment is adapted to the needs of the person, can serve as a bridge between the paradigm of rehabilitation and the paradigm of independent living. This concept considers the individual as possessing certain needs, forces, skills, deficits and limitations within the context of the environment where the individual is working and living. In turn, this environment provides certain resources and opportunities to help meet the demands and expectations of the individual and help optimise her relationship with her surroundings. The emphasis now encompasses not only the capacity of each individual, to include her environment, seen to either facilitate or impede the development of her activities. Some environments are truly hostile to many people (the elderly, people with disability, children, etc.). Others form a necessary part of human activity (schools, work centres, museums, theatres...), and yet, as a result of their inaccessibility, erect barriers to true participation. Analysing our environments in these terms helps put things in their place; it is clear we must all share responsibilities and become aware of the part each one of us must play, both individually and collectively, in this process. These are the ideas behind the concept that has been coined "Design for all”. This concept places the actual needs of persons with disability at the very core of all design processes. It provides a vehicle to help all citizens satisfy their rightful demand to participate in society, by adapting all the necessary products, systems and objects so they can be used by the greatest number of people possible, irregardless of their different levels of ability and capacity in different situations. Design for all means that a large majority of the services, objects and systems available in society will be appropriate for almost everyone, whether they are disabled or not. When design for all is applied systematically, there will only be a minimum number of people with disabilities who will be unable to use products and services and who will need more personalised forms of intervention. Design for all can have a very interesting impact on standardising markets. It will help reduce production costs, on the one hand, while, on the other, everyone will be able to benefit from products designed with the intent of providing greater comfort and security and that will be easier to learn to use. From a market perspective, logically, then, the most successful products will be those that are the easiest to use, and that do not present a constant challenge to our capabilities. In recent years, a very simple but far-reaching concept has been gaining ground that proposes that impairment be seen as a difference. This concept dovetails with the environmental approach that defends diversity as our heritage. It envisages a society where everybody has a place, where there is room for all kinds of diversity, and where all human beings can develop their full potential. These approaches are inspired in the articles in the United Nations’ Charter for Human Rights.


Associations of people with disability and the Disability Movement itself have also modified their ideas as the general paradigms of disability have shifted; at times they have lead the way to change, while at other, they have adapted to new ways of thinking. While it is too early to evaluate this process in depth, it appears that the associations that have most evolved and innovated at a national and international level have been inspired by the ideas forwarded by the movement for independent living. Over the years, instances of collaboration between public and private entities have provided numerous examples of good practices. The declaration of the first International Year of Disabled Persons in 1981 upon the initiative of the United Nations brought in its wake the first European Programme in favour of persons with disabilities in 1983. The ILO’s Agreement 159 of 1983 made professional re-adaptation and employment obligatory in the ratifying countries. It placed the ideas of equal opportunities and equal treatment within the broader context of labour legislation, going well beyond the context of professional re-adaptation. Equal treatment is understood not only on a formal level, but in terms of the adaptation of the work place, considering that true equality is not reached by merely employing a disabled worker if the environment, machines, tools or procedures have not been adapted to accommodate the worker’s characteristics. The Americans with Disabilities Act (ADA) of 1990 is an example of what legislation can contribute to achieving the objective of equal opportunity. This piece of legislation clearly defines what discrimination is and establishes fields of action and a calendar for compliance. The 1993 Standard Rules on the Equalization of Opportunities for Persons with Disabilities provides an integrated, holistic focus on the question of disability and examines requirements for participation, specifying measures for execution. Under another important aspect, it contemplates the creation of supervisory mechanisms. These, and many other milestones, provide necessary instruments to point the way along the arduous road towards empowering people with disability so they can exercise their legitimate rights like everyone else. However, it will take a long time for the more positive models of firmly take hold in society. For people with disability and other groups, such as immigrants, the progressive and open aspects paradigms still co-exist with the prejudices and more closed associated with the traditional model. 2.3. Society and the perception of disability action to minority of these attitudes

Institutional efforts to promote a more mature awareness of what disability is have borne little fruit. The same can be said of laws, which, in and of themselves are not enough to reinforce social change, and alone rarely achieve what they set out to do. New strategies must be developed to provide positive and active images of disability, to replace the traditional view that disability is associated only with pain and incapacity.


We tend to form our own images of other people, images which have little to do with their actual reality or experiences. This mental mechanism hinders fluid inter-personal relationships, and leads to misunderstandings, prejudice and rejection. If we complacently accept the image society has traditionally projected of disability, we tend to think of disability as associated with pain, solitude, fear and helplessness. Is it any wonder many people shun forming relationships with people with disability? Who is going to want to get close to precisely all those things that non-disabled people spend their lives trying to avoid? We turn our backs on our fears, and rejection and running away become defensive mechanisms.
Despite the good intentions of people, unfortunate terms are often used to describe persons who are seen as being different. Words like «cripple» (person whose leg movement is limited) or «vegetable» (person with limited movement in arms, legs and the muscles of the neck) reflect the mixture of rejection, lack of knowledge and compassion with which people consciously or unconsciously refer to the persons with disability. There are people who suffer from an intellectual disability who are labelled mistakenly as «imbeciles», «retarded» or «spastics». Persons with mental illnesses often suffer from the most extreme forms of rejection as a result of the attitudes of others. In fact, a special term has been coined to describe this extreme rejection which often arises from our fear of disability and which is projected against people with disability: the term is «stigma». Susan Parker, Council for of Rehabilitation. International Labour Organisation (ILO).

We should remember here that the concept of social exclusion extends far beyond economic considerations, and that poverty in social relationships is also an important part of the lives of people with disability. Privation of social support, the product of negative social attitudes, manifests itself in the stigmatisation and abandonment that compound the negative aspects of disability. It significantly reduces the opportunities of people with disability to contribute productively to society, and raises the risk that these people will become trapped within the circle of poverty. We live in a society that values aesthetics and physical appearance above ethics and the deeper meaning of things. Our society has erected a false image of what is “normal”, and promises happiness or unhappiness according to how closely we match that image. Society itself generates frustration and suffering based on our physical appearance. Proof of this is the fact that diseases like anorexia and bulimia have become typical of our times. But what happens in the case of a person with a “poor” appearance, who nonetheless has something to offer? Then, we perceive a second element, usefulness. We can accept someone with a negative appearance provided they are useful to us. And almost without realising it, we accept and teach that we should be valued if we have the right appearance or if we can be useful, and we accept discrimination when, through the passing of time or for other reasons, a person no longer fulfils either of these two circumstances.


Research has shown that society at large knows little about disability and disabled people. The few aspects that we are aware of tend to have a more negative and selfish expression than a positive one. It is, therefore, necessary to place the emphasis on the abilities of people with disability rather on what they are unable to do. This society, which shies away from contemplating important aspects of life such as solitude, pain and discrimination, which uses language as a kind of buffer, which endeavours to promote the “politically correct”, is avoiding holding very necessary debates. What strange process leads our politicians to publicly condemn rejection of, and discrimination against people with disability, and yet allows the persistence of environments, built facilities and systems that only emphasise this discrimination? What makes them take on values that favour one race or aesthetic quality over another, or support actions that conflict with the laws they themselves have created? We must begin to seek and value the essence of the person, the only element that will withstand scrutiny both in disabled and abled people, in people with or without an “acceptable” appearance, of a given race or another. Only then can we correct the distortion in society's perception of people with disability and of other minority groups. Laws promoting and prohibiting certain forms of behaviour are a fundamental element, but they are not sufficient to fight against exclusion and modify attitudes firmly rooted in social behaviour. Parallel interventions are required to create synergies that will help change the attitudes and behaviour patterns that stand in the way of the integration of minorities into mainstream society. Once we accept that disability arises from the interaction between personal circumstances and social factors, such as the greater or lesser accessibility of appropriate technical aids, the problems associated with disability can only be addressed by overcoming the social disadvantages affecting people with disability. A tool conceived to achieve this goal is "positive discrimination”, whose transfer to national and international legislation has given mixed results over the last three decades. The aim of positive action is to ensure substantial, and not only formal, equal opportunities for the members of the different groups that are victims of social disadvantages. Positive action involves the elimination of barriers, impediments, obstacles or any other circumstances that limit or restrict these collectives’ access to equal opportunities.

In its importance, the agenda of discrimination does not cover all the aspects which prevent people with disability from fully enjoying their human rights. It is an indispensable tool, but it should be frankly accepted that although effective legislation may open doors, it cannot help the people to go through these doors if other requirements are not resolved. In other words, concern for formal freedom must be shown in the necessary means for exercising this freedom. We should not forget the importance of obtaining economic, social and cultural rights for the people with disability. And I am not referring to social policies which put the people with disability into cages of gold with passive attention as was the case in the past. No. I am referring to a social policy which endeavours to provide support to truly maximise


formal freedom. Gerard Quinn, National University of Ireland

Ensuring equal opportunities for people with disability means providing them with the means to lead a full and dignified life, where they will have complete access to cultural and recreational activities and enjoy all the benefits of the information society. It means creating an accessible space where we can all live together, and redefine our concept of disability through mutual awareness. 2.4. Human Development and disability

To make sweeping statements about the expectations of people with disability would be pretentious, and for various reasons. The first is the enormous heterogeneity of disabilities themselves which elicits a vast range of social responses and attitudes that make it virtually impossible to speak of a single group. Society reacts differently to a person with a physical impairment than to a person with an intellectual impairment, not to mention the most extreme case of people suffering from mental illness. Secondly, the circumstances surrounding disability differ vastly from one person to another, depending on her socio-economic and cultural development. This, in turn, will be greatly influenced by the culture of the place where the person lives. Because of these factors, the problem of disability is a relative one: It depends, first of all, on socio-economic and cultural realities and, secondly, on the technical means available to compensate for impairment. Over time, obstacles change, and often when one is overcome, another is detected; they become confused and it is difficult to know how to deal with them separately, making it necessary to keep our guard up at all times and be ever vigilant to detect new factors of isolation. The development and implementation of the new information and communications technologies is a perfect case in point. Over the last twenty years, strides in communications and computer sciences have led to synergies between these two fields, making available solutions and services that are changing the lives of millions of people throughout the world. Nonetheless, these advances have not always been applied to fields like physical accessibility, crucial in enhancing the level of social inclusion of people with disability. Instead, we are faced now with new forms of discrimination and inaccessibility, and the threat of exclusion from the information society hovers over all those who do not conform to a single pattern. Technological development is, therefore, an ambivalent gift. On the one hand, it provides enormous possibilities for improving the daily lives of people with special needs by providing innovative support services. New technologies hold the great potential of helping to compensate for impairments and providing alternative capacities. And yet, a bi-product of these advances has been the


appearance of new, previously unknown barriers that are threatening to leave behind all those who do not adapt to their requirements. We firmly hold that there is no reason to resign ourselves to accepting new barriers with each technological advance. We further believe that these barriers are not an intrinsic bi-product of technology, but rather of social attitudes and practices. Data on the subject seem to corroborate that although there is a perceptible change in the way society is approaching the phenomenon of disability, negative attitudes and images are still all too prevalent. The idea that fighting for the rights of people with disability is fighting for a better and more respectful society is an ideal that has yet to take firm hold in society at large. A feeling of confrontation still persists, and rather than thinking about what we can all achieve together, we tend to see differences between us as obstacles. Far from impeding cooperation, we must remember that diversity enriches social interactions. Various authors, including Joshua Malinga, world chairman of Disabled Peoples' International, and Soledad Cisternas, lawyer and director of the Legal Programme on Disability in Chile, share the opinion that democracy is not possible while there are people dying of hunger, while exclusion prevails and while there are people who are barred from such basic things as education, or even access to the general transport system. They believe that there can be no democracy when barriers of all kinds diminish the possibilities of social participation and integration, or set too high a price on achieving these goals.
There are many myths that limit progress of people with disabilities. Several of the most prevalent myths are: People with disabilities are not capable of leading full and productive lives which contribute to the country. This is the myth o f helplessness. Second, churches or private philanthropy can and should handle the problem. This is the charity myth. Third, countries at a difficult stage of economic development cannot afford to deal with disability issues. This is the myth that people with disabilities must be given a low priority. Sid Wolinsky, Disability Rights Advocates. California (USA).

How can we explain a world like ours? And if it is really so, what can we do to change it? We must strive to understand these issues and begin to lay the foundations for new forms of relations. Another prevalent attitude seems to distinguish between mild and severe disabilities when considering the rights of people with disability. There are even people with a certain level of academic training who do not fully accept that seriously disabled people are able to do any productive work with any level of quality. As with all myths, these persist because people suspect they may hold a tiny grain of truth. In fact, even when misguided, these arguments are often put forward in all sincerity. To counter this process that undermines the potential of people with disability, it is very important for leaders in the disability


movement to visit other countries to see for themselves what achievements are possible. These ideas must be used to inspire a global process that generates a universal value system that will call for technical advances to be placed at the service of integration for all. Under this system the ideas of diversity and equality should be seen as forming a necessary binomial in all aspects of life. We are beginning to understand that the ills of society do not reside so much in technical development but in interpersonal relationships, that is, in the way we treat each other. A society’s values are reflected in its rules and laws and in the services it renders its citizens. A society that discriminates against, or excludes persons with disabilities or other groups at risk, clearly shows that it values these people less. A society that takes into account the needs of these groups shows that it is a society based on decency that understands that providing opportunities for all its members contributes to social quality. There is no doubt that progress in telecommunications and, more specifically, the Internet have given minority groups a showcase to make their problems more visible on this world wide screen, providing a forum to denounce discrimination and draw attention to the values of equality, respect and inclusion.
We can visualise the process of inclusive globalisation as a natural consequence of the evolution of humanity towards technological progress. During this process, a new concept has been brought to light, the human family. It is a concept which contains relevant ethical implications, provided that, in using the idea of the family, we are thinking of links and ties, fraternity and solidarity and, why not say it, human love. A family should be aware of the reality and needs of each and every one of its members, and it should also be concerned with promoting each of its members by creating the appropriate environments. Each member of this large family has the same rights, rights which do not lose their force as a result of the imperfect actions of a some of its members, in other words, society in general. The promotion and defence of human rights is a central question for this large family, and it finds itself now at the point where it should place the rights of minority groups at the same height as those rights which are traditionally recognised by doctrine. María Soledad Cisternas Reyes, Lawyer and Political Analyst. Director of the Legal Programme on Disability in the Diego Portales University, Santiago (Chile)

Under the auspices of its Development Programme, The United Nations has endeavoured to gauge the state of human development throughout the world, presenting its findings in the Human Development Report 2000. The indicators of development chosen were quality of human life and well-being, with the understanding that if well-being encompasses living with substantial liberties, human development is integrally linked to strengthening capacities that broaden the range of things that a person might be, or might do with his or her life. The index of human development incorporates very elementary aspects of


quality of life, such as "living a long and healthy life, being well informed and enjoying a dignified standard of living...”. These aspects are tied to the concept of collective rights which include the rights of the different minority groups. The United Nation’s report, nonetheless, recognises that overall advances in human development are not always accompanied by progress in human rights. An analysis that concentrates solely on the aspect of human development may mask the vulnerability of certain individuals or groups within society. For this reason, when identifying priorities for action, the Human Development Report states that the "objective of this new century should be that all people might enjoy all rights in all countries”. We believe it would be very useful to include disability among the indicators of human development, as this would provide a snapshot of a significant group of people whose reality continues to be “invisible”. It is paradoxical that the index of human development has omitted indicators related to disability, since the United Nations has repeatedly declared that disability is a human rights issue, and estimates that 10% of the world's population is disabled. If there is to be a revolution in the human rights of people with disability, certain fundamental values will have to be taken seriously and applied to the benefit of all citizens. Referring to human rights may seem lofty and theoretical, but we would feel these issues much closer to home if we were to suddenly find that we could not exercise our right to an education, to enter a public building, to use public transport, to have a private life or to take our own decisions. These are violations people with disability face day after day. Human rights fundamentally exist to help achieve human dignity. The shift in the disability paradigm away from the medical assistance model towards the social model based on rights has changed the way people are considered, from object to subject. The idea that people with disabilities are a problem is giving way to the idea that they have rights and that their problems generally arise from their interaction with their surroundings. The change towards a social model based on rights has shifted the focus away from trying to change the person with a disability, to adapting society’s response to his needs. The United Nations Organization spoke for the first time of human rights in relation with people with disability in 1975, when it promoted the Declaration on the Rights of Disabled Persons. Later, in the ‘80’s it launched the World Programme of Action concerning Disabled Persons. The approval of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities in 1993 was a further advance. Two important aspects of the Rules are that they incorporate a supervisory mechanism and designate a Special Speaker responsible for overseeing their application. Although people with disability are far from exercising their full rights today, a giant step has been taken in the right direction. While only a short time ago, people with disability considered themselves the victims of an unfair situation in which they felt helpless, today, we have begun to consider this situation a violation of their


human rights against which they can now take legal action. There is a close relationship between the development of human dignity and the defence of diversity and social integration: The concept of dignity involves the notions of integrity, decorum, honour and excellence, all of which are severely deteriorated when a human being or group of people see that their rights are threatened or restricted. Violations of this nature give rise to erga omnes obligations, in virtue of which every member of society, from her own particular position or role, must help to reestablish these rights. The dignity of the social mass can only be measured by the way it respects and protects the dignity of all of society’s members. To put it another way, we cannot speak of a society founded on human dignity if, at its core, it tolerates the violation of the rights of certain individuals or groups. By championing this concept, people with disability are slowly contributing to the development of human dignity on an individual and social level. Slowly yet steadily, society is beginning to seek solutions to combat the various manifestation of discrimination on the grounds of disability: the dearth of educational opportunities and openings in the labour market, the lack of access to information, barriers in the physical environment and in communications, the lack of access to culture, transport and sports, the barriers to participation in public and political life and the absence of people with disability in the decision-making process, to name but a few areas where discrimination is patent. This discrimination is further compounded by the absolute invisibility of the sector, as has already been pointed out. Evidently the timid, yet growing public awareness of disability we are witnessing today is contributing to the development of human dignity, and is slowly forging societies that pay closer attention to the quality of the relationships between their members. We must work hard to internationalise these concepts and make them emotionally acceptable, if we are to truly give value to diversity and advance towards a society that is more cohesive and richer in content. A society based on decency is a one whose institutions do not humiliate the persons under its authority, and where its members do not humiliate each other. Along the road towards such a society, it is first necessary to eradicate cruelty, and then humiliation. In a society which is not decent, a society which tolerates the privation of freedom and equality, humiliation is the bi-product of a split between first and second class citizens. If it has a sense of decency, a society will strive to ensure that all its members, including people with disability, lead dignified lives. Such a society will eliminate barriers and make sure that no one is forced to renounce culture, recreation or the services of the information society. It will encourage all of its citizens to exercise their right to active participation. A society based on decency will redefine the concept of disability, and will take the measures needed to guarantee equality between all its members. By enforcing the human rights of groups at risk of exclusion, a society creates a place for


everyone, fostering each person’s participation within the community. But before this can happen, it needs to articulate adequate control mechanisms to guarantee the dignified treatment of all human beings. 2.5. Equality and participation in an inclusive society

Through the definition of their needs on these pages, we have gained some insight into the expectations of people with disability. These can be summed up simply as the desire to participate in society under conditions of equality. People with disability want to claim their right to enjoy the opportunities life offers any individual, on equal footing with their fellow-citizens; they want to prepare themselves to take part in life by getting a sound education, and eventually find the employment that will consolidate their social integration. They wish to take an active part in the life of the community, and when they stake these claims, they are fully aware that they are not only claiming their rights, but are willing to take on the civic obligations they entail. People with disability are fully prepared to contribute to society, accepting that equal citizenship means equal responsibilities. These aspirations simply express the desire to be part of the mainstream, which means the full participation of people with disability in all of society’s economic, social and cultural processes, within a framework that rests on freedom of choice. This perspective, which stresses self-determination, integration, equal treatment and the value of diversity, implies that equal rights, human dignity and self-esteem must be placed at the heart of any debate about disability. When this happens, the focus of these debates will move away from the individual, to focus on his/her surroundings. This new approach springs from the idea that human diversity is a significant aspect of any society, and that a policy for opening up spaces for diversity, besides being ethically necessary, is a positive factor for both society itself and the productive processes of our economies. These aspirations justify the demand that all processes for participation be open to disabled children and students, with special emphasis on education and training. When we examine the accessibility of these areas today, we see that the instruments designed to facilitate participation in collective activities, like transport and communications networks, have excluded people with disability in the past. This situation must be corrected, and a new evaluation is being made of the different physical, attitudinal and communications barriers that prevent the effective participation of people with disability. Society must become aware that the ultimate consequence of excluding people with disability is that their talents are wasted. It is, therefore, of the utmost importance to eliminate these barriers, most particularly in the area of employment, the most basic stepping stone to full social participation. Exclusion and discrimination on the grounds of disability violate various universal human rights, particularly the right to equality. Structural


discrimination and exclusion due to disability debilitate the competitiveness of economic systems and the cohesion of our social systems. Society as a whole is affected when the talent and potential of people with disability are not adequately recognised. Traditionally, the political response to the phenomenon of disability has been to provide social compensation through charity and benefits, a treatment that places people with disability at the edge of society. Specialised social services have also been offered, and while they are well intentioned, they have failed to promote the integration of people with disability in community life. This situation is being recognised as clearly unsustainable. The change in our concept of disability is driven by the recognition that the best way to encourage human diversity is by creating economic and social processes that are inspired in the equality of all members of society, and that are open to all. The fundamental principle of equality, understood as access to equal opportunities, is currently considered the necessary point of reference for economic and social structures and the basis for the recognition of the rights of people with disability. Finally, the ambitions of people with disability are not limited to seeing their demands for participation and equality vindicated; they want to help bring about an inclusive, supportive and fair society for all. They long to overthrow the double standard that condemns large numbers of individuals to live outside the reaches of progress, and they claim a more egalitarian distribution of wealth and opportunities between the different countries and regions of the world. They know that it will only be in a society that respects the dignity and the rights of all its members that no one’s expectations will be thwarted. People with disability are willing to help build this society. To all those who, like themselves, feel or have felt discrimination they offer the value of their experience, their strength, their will and their reason. 3. THE REALITY OF DISABILITY AT THE BEGINNING OF THE 21ST CENTURY 3.1. The concept of disability

Before any solutions can be proposed to deal with a problem, it is important to first try to define it and attempt to comprehend its magnitude. In the case of disability, a review of past definitions helps understand how the concept has developed over time. The United Nations’ “Declaration of the Rights of Disabled Persons” used the term impaired to refer to “all disabled people who, entirely or in part, are unable to attend to the needs of a normal individual or social life as a result of a congenital impairment or impairment of another kind with regard to their physical or mental faculties”. In its International Classification of Impairments, Disabilities and Handicaps (ICIDH), the World Health Organisation (WHO), on the other hand, distinguished between impairment, disability and handicap. Impairment was understood to mean “the permanent


or transitory - psychological, physiological or anatomical - loss of structure or function”. Disability was “any restriction or impediment in the functioning of an activity caused by an impairment in form or within the area considered normal for a human being”. Finally, the term handicap was reserved for “incapacity causing a disadvantage for a given person, which limits or impedes the fulfilling of a function which is normal for this person in accordance with his/her age, sex and social factors”. This definition of handicap is a synthesis of the socalled "medical model”, in which disability is seen as a problem or defect inherent to the person, caused by an illness or health problem, and the "social model", in which disability derives not only from a condition specific to the person, but from the interaction between the person and his social surroundings as well. More recently, the terms disability and the disabled have tended to substitute handicap and the handicapped, and the latter are falling into disuse because of their negative connotations. Following this trend, in its new International Classification of Functioning, Disability and Health (ICF), the WHO adopted the term disability to include the terms “impairment”, “limitations in activity” (the “disability” of the ICIDH) and “restrictions in participation” (which in the ICIDH, was denominated “handicap”). In most countries the definition of disability makes reference to a value of functional limitation, usually expressed as a percentage. Thus in Greece, for example, Act 1.648 of 1986 defines disabled people within the context of employment as all people aged between 15 and 65 whose possibilities for professional activity are limited as a result of a chronic physical, mental or psychological illness or disability, causing impairment greater than 40%, who are registered with official employment services. The Persons with Serious Disabilities Act in Germany considers people with disability people whose capacity of integration in society is limited by the effects of a physical, mental or psychological situation which is contrary to what is considered normal. Germans with serious disabilities may, upon request, receive an identity card, provided they have a minimum disability level of 50%. The term “people with disability”, according to the Americans with Disabilities Act (ADA) in the United States is applied to any person who has a physical or mental impairment which substantially limits one or more activities. 3.2. Statistical realities at the beginning of the 21st Century

All policies developed by individual states or international or supranational bodies should be based on a statistical appraisal of the number of people affected, an exhaustive analysis of the segment of the population involved and an inventory of the problems of the groups of people for whom the policies are developed. Since general and specific statistics about disability are very poor quality, the Human Development Report 2000 of the United Nations


Development Programme (UNDP) made important inroads when it called for major improvements in collecting statistics on human development in the future. This declaration is particularly significant since the United Nations’ document does not mention among its indicators the subject of disability in any of its varied aspects. An indicator we could use to broach the subject of disability from a global perspective is the Human Poverty Index (HPI), a multi-dimensional measurement of poverty that includes, in a single index, privation in four basic areas of human life: a long and healthy life, knowledge, economic provisions and social inclusion. However, this approach does not give the full picture, since privation of a long and healthy life, for example, is measured by the percentage of inhabitants who have been born and who do not expect to live to the age of 40; privation of knowledge is evaluated by the rate of adult illiteracy; and privation of economic provisions is measured through the percentage of the population who have no access to health services or drinking water, and the percentage of children under the age of five who are moderately or severely underweight. There is clearly an imperative need to incorporate indicators and verifiers which include disability in any evaluation of Human Development at an international level. It is only with an analysis with this degree of detail that it will be possible to form an idea of the actual situation of this significant group of people, to date ignored in this important international analysis. This oversight only serves to perpetuate the traditional invisibility of the sector.

It is absolutely necessary for some “key indicators” to be drawn up at a European level, which, accepted by all the Member States, would show the level of social inclusion of people with disability in comparison with other groups and/or the population which is not disabled, and which might be used to evaluate the effects of social policies to fight against exclusion and the vulnerability of the group. The use of generic or imprecise indicators makes it impossible to perceive people with disability as a group which is especially vulnerable to the risks of social exclusion. Therefore, it is necessary to define precise and specific indicators, agreed upon by the organisations of the sector, which will allow us to evaluate to what extent people with disability participate in social life under equal conditions with the rest of the population. A series of key indicators should be developed for areas of priority inclusion and, especially, access to employment, access to lifelong training and access to the information society. Establishing 3 or 4 key indicators, accepted by all, for each one of these four areas of social participation, would provide a flow of manageable information and would provide us with data for carrying out comparative analyses with the different reference groups. Carlos Rubén Fernández Gutiérrez. First Executive Vice-President of the ONCE Foundation. Spain.

Collecting statistical information about the realities of disability is simple


enough when considering small groups of the population in specific geographical areas. However, it becomes far more complicated when we try to approach a regional, national or supranational scale. For this reason, there are many statistical data on disability in developed countries, while there are many fewer on the supranational level, or for developing countries that lack the structures to collect them. What is more, collecting statistical data on disability comes up against the taboo of recognising disability, since people understandably are reluctant to identify themselves with a condition that will breed social discrimination in numerous societies diversity is not recognised as a source of social wealth. We cannot forget either that in some cultures the idea still persists that disability is socially unacceptable (for example, in many areas of Asia, disability is seen as punishment for a sin committed in a previous life). Another problem with statistics on disability is their interpretation. Since no single concept of disability is universally adhered to, the statistics give different results within the same geographical area. For example, in the case of Great Britain, based on the definition of general disability as a “limiting, longstanding illness", 21% of the population over the age of 16 has a disability (data from the General Household Survey of 1985). However, if we use the definition of disability based on limitations when carrying out a series of daily activities and on conditions of health, only 14% of the British population over the age of 16 was disabled in 1985. Before the World Health Organisation drew up the International Classification of Impairments, Disabilities and Handicaps (ICIDH) in 1980, there were no internationally comparable statistical systems because the concept of disability was applied differently in each country. An exception was the Organisation for Cooperation and Economic Development’s (OECD) early attempt at standardisation at the end of the seventies, which generated the so-called “OCED long-term disability list". Both the ICIDH and the ICF have been designed to overcome this problem by providing uniform definitions to be used in the collection of data. One of the principle objectives of the new International Classification of Functioning, Disability and Health is to use more positive language with the introduction of terms such as “activity” or “participation”. Another is to include a broader definition of disability. The new Classification distinguishes between problems associated with performing specific activities, problems related to the “body/structure system” (previously called “impairment”) and problems affecting participation (“handicap”). In 1988 the United Nations created the Disability Statistics Database (DISTAT), the fruit of the collaboration between the United Nations Statistics Office (UNSO) and the Research Institute of the University of Gallaudet. This work represents the first serious attempt to identify and compile statistical data on disability in different countries. However, when they began the project, the research partners found that only 95 countries or geographic areas had


statistics for the years 1975 to 1988. The available material was thus used to compile the first United Nations Disability Statistics Compendium, published in 1990, providing information on 55 countries or geographical areas. Twelve years later, the database contained 177 national studies from 102 countries, data which is currently being duly tabulated and analysed by the UNSO. The United Nations also created the Washington City Group, to promote the collection of statistical data on disability, and help countries draw up their own statistics on the subject. Another major objective of the Group, which held its first meeting in February 2002, is to reinforce the use of statistics when drawing up policies for disability aimed at achieving full social participation and improving the quality of life of people with disability. A recent study by the World Health Organisation estimated that between 7% and 10% of the world's population, or between 500 and 600 million people, have some kind of disability. Approximately 80% of these people live in developing countries, where only 1% and 2% of the population have access to basic rehabilitation and health services. According to the United Nations Disability Statistics Compendium the percentage of the population with disability varies between 0.2% and 20.9% of the population depending on the country. This discrepancy is obviously due to a lack of homogeneity in criteria when collecting statistics, rather than to differences from one place to another, which doubtless do exist in the case of different disabilities, but not in the proportions suggested by these data. Recently, Peter Coleridge, author of the estimations made by the World Health Organisation, suggested that in developing countries 4% of the population has some kind of disability whereas this percentage increases to 7% in industrialised countries due to their older demographic structure. The United Nations Development Programme (UNDP), on the other hand, estimates that the global percentage of disabled persons is 5.2% of the world’s population. The UNDP divides the countries of the world into three categories, depending on three dimensions of human development: longevity, knowledge and living conditions. Cross references of these data with statistics from the DISTAT database show that the countries with high human development have a disabled population of around 9.9%; in countries with medium human development the figure is around 3.7%; in countries with low human development, the figure is 1%. Despite differences in the age structure that explain these discrepancies in part, it is obvious that many disabilities are not included in the statistics of the less developed countries. Developed countries The high life expectancy enjoyed by the population of developed countries raises the rate of disabilities, since the risk of acquiring a disability increases with age. The population in these countries has sufficient economic resources and welfare provisions to guarantee generalised access to scientific and medical advances to prevent numerous disability-causing illnesses.


Furthermore, these same advances mean that people with disability can enjoy a better quality of life and may have a longer life expectancy compared to other parts of the world. In the United States 22.5% of people between the ages of 45 and 54 have some kind of disability; of these, 13.9% suffer from a severe disability, although only 3.6% require assistance in order to lead a normal life. According to data from the United States Census Bureau from 1997, of a total of 267.7 million people, there are 52.6 million North Americans (19.7% of the population) with some level of disability; of these, 33 million (12.3%) have a severe disability. In the United States, 3.8% of the population, or 10.1 million people, require the assistance of another person to perform daily tasks. Similar percentages have been observed in surveys and studies carried out in other Western countries. Only two years ago, the European Union appointed a group of experts to establish the conceptual unitary bases required to draw up common statistics among the fifteen Member States. The EU calculates that some 10% of the European population (approximately 38 million people) have some kind of disability. Since 1994, there has been a module on disability in the Eurostat Households Panel survey with standardised data for all the countries in Western Europe. Data on disabilities have also been provided by the Eurobarometer nº 54.2 of 2001, which shows that 6 out of every 10 Europeans know someone with a disability, and that 97% of the population of the fifteen States feel that something should be done to ensure the full social integration of people with disability. It is hoped that the European Year of People with Disabilities in 2003 will provide opportunities to understand better the reality of people with disability in Europe. In Spain, the recent survey carried out by the National Institute of Statistics, the Institute of Migrations and Social Services and the Foundation of the National Organisation of the Blind in Spain (ONCE) shows that 9% of the Spanish population (3.5 million people) have some kind of disability. In Germany there are 6.5 million people who are severely disabled and duly recognised by the country’s different Administrations; of these, 2.25 million are between the ages of 15 and 60. Latin America In a recent meeting of the Inter-American Development Bank an exhaustive study was presented on disability in Latin America. The first difficulty in collecting data in these countries was the variation in methodologies used, which made it difficult to compare the data from the different sources in the region. Because of these restrictions, the study is more a collection of national statistics than an analysis of the reality of the region from an overall perspective. The estimated prevalence of disabilities in Latin America reflects a wide


spectrum ranging from 1.2% of the population in Colombia to 13.1% of the population in Peru. In some of these countries there is conflicting information which makes it difficult to discover the real disabled population: in Colombia, for example, the National Administrative Department of Statistics (Departamento Administrativo Nacional de Estadística) calculated in the census of 1993 that 1.2 % of Colombians have one disability or another. However, the National Health System (Sistema Nacional de Salud) estimated that the proportion of the Colombian population with disabilities was 23.8%. Africa According to the DISTAT, the percentages of the population with disabilities are lower in developing countries due to the definitions used for disabilities and because there are far fewer elderly people. In Africa, the few statistical sources available give very different ranges of figures. For example, in Ethiopia 18% of the population under the age of 15 is disabled (according to a national source for the years 1979-80), whereas in Malawi only 3% of the 1987 census suffered from a disability, and in South Africa it is estimated that the percentage of the population with disabilities is 5%. According to data from the World Health Report, published by the WHO, only 9 of the 53 African countries for which data is available have a life expectancy for children born in 1999 greater than 50 years. For the first time, this international organisation has calculated life expectancies for children free from disabilities born in 1999 based on a new indicator, the Disability Adjusted Life Expectancy (DALE), which measures the years that the child should live in "perfect health". The charts of the WHO show that the number of years of life expectancy in conditions of perfect health which are lost as a result of a disability is significantly greater in poor countries, due fundamentally to the structural limitations which have a greater effect on children and youths. In regions with a higher level of health, 9% of life expectancy is affected by disability, as opposed to 14% in poor countries.

Only between 1% and 2% of the African population with disabilities, calculated at approximately 700 million people, have access to attention and rehabilitation services. 80% of the people with disability in Africa live in rural areas and the majority are women who suffer a double discrimination or, to put it in other words, a double disability: that of being a woman and that of being disabled. And it might even be a triple discrimination if we add the fact that they are black. As we have mentioned before, the majority of disabled people in Africa do not live for very long, especially if they suffer from a serious disability, because there are no medical installations, there is nothing much to talk about, there are no wheelchairs or equipment in those areas of Africa suffering from wars or conflicts nor in Central Africa. Joshua Malinga, Chairman of the Disabled Peoples' International. Bulawayo (Zimbabwe).



In the Asia-Pacific region there are striking contrasts between the developed and the developing countries. There are also wide variations between the estimates of disability given for one country and another. According to the estimates of the number of disabled people in The Asia-Pacific Region (19932002) over the last decade, 18% of Australians and 19% of New Zealanders had a disability of one kind or another in 1996. On the other hand, the number of Chinese people with disabilities was estimated at 4.9% (1987), and the number of people with disability in India was estimated as being as low as 1.8% (1981). The lack of infrastructures, cultural diversity and the use of different definitions mean that in India, in 1991, the National Sample Survey stated that 1.9% of Indians suffered from a disability that affected one of the following areas: sight, hearing, speech and mobility; in a different sample for the same year, it was estimated that 3% of Indians between the ages of 0 y 14 were mentally retarded. According to the United Nations Economic and Social Commission for the AsiaPacific Region, almost two thirds of the people with disability — some 400 million people — in the world live in South and South-East Asia, and most of these are imprisoned in poverty and suffer from discrimination. For the United Nations Commission, the impoverished living conditions of the people with disability in South-East Asia constitute a vicious circle where poverty and disability are both the cause and consequence of one another: poverty is generated by disability and many suffer from disabilities as a result of poverty. 3.3. Legal Realities

The Madrid Declaration reaffirmed that people with disability have the same fundamental rights as the rest of humanity, echoing the first article of the Universal Declaration of Human Rights. However, before all citizens will be able to exercise their rights, all the world’s communities and societies must celebrate the diversity of their populations, and specifically guarantee measures that will allow everyone to enjoy all the civil, political, social, economic and cultural rights recognised by the various international Conventions. While noticeable progress has been made on this front, the struggle for people with disability to fully exercise their liberties and rights has yet to be won: They continue to fight to overcome discrimination, to embrace equality, to free themselves from poverty and live with dignity, to achieve the freedom they need to fulfil their potential as human beings, to exchange fear for a sense of personal security, to overthrow injustice, to gain true freedom of speech, participation and association and to be free to hold a dignified job without exploitation. Diversity is currently seen as one of humanity’s assets; multi-cultural expressions are valued and human solidarity is prized. These advances notwithstanding, "...even with the new standards, discrimination and inequality


continue to be present in almost all countries in the world."
People are born with certain basic rights, but neither the realisation nor the enjoyment of these rights is automatic. History shows us how people have had to fight for their rights. The cornerstone in this fight has always been political activism. The new debate on human rights places emphasis on the importance of these rights in all normative areas. The focus of development based on rights is converting human rights into an integral part of development processes and policies. The indivisibility of human rights has been accepted as a principle, thus displacing the concept which reigned during the cold war and which divided human rights into two groups: Civil and Political Rights and Economic, Social and Cultural Rights. There still exists a latent tension between some of these rights, for example, there is tension between the universality of human rights and their specific cultural nature; between national sovereignty and the supervision of human rights by the international community within individual countries; between the indivisibility of human rights and the need to establish priorities due to limitations in resources; between the ratification of international Treaties and their application at a national level. Human Development Report 2000. United Nations Development Programme

The 20th Century was marked by social, scientific and economic advances that raised the average life expectancy. According to the United Nations, the world’s population reached 6,100 million people midway through the year 2000, and its current growth rate is 1.3%, or 77 million people a year. Over the last century, people with disability have experienced significant social and cultural changes, going from being considered passive subjects maintained by a paternalistic society, to becoming active members of society. The strong disability movement has been successful to a certain extent in putting disability and diversity on the economic and social agendas, and this has lead to the adoption of numerous international resolutions and agreements. Thanks to technological advances applied in the field of rehabilitation and to the adaptation of the workplace, people with disability can now make an important contribution to society’s productive capacity. From the economic point of view, the traditional separation between rehabilitation and assistance has proven to be unnecessarily expensive and unproductive. One the one hand, the services provided by institutions incurred unnecessary high costs, and on the other, the tendency to isolate people with disability economically and socially from the rest of the population was burdensome and counterproductive. The evolution of the policies of the United Nations and other international organisations to improve the plight of people with disability has helped shape the legislative measures that have been applied in many countries. These policies express, in fact, some of the most advanced points of view in the field. The legal standards that protect and enforce the rights of people with disability find their origins in the recognition of human rights, and their legal definition through the recognition of fundamental rights. As a result of these advances, more value has been given to social and economic rights and, most


particularly, to the right to work, to social protection in situations of need and to the right to a worthy dwelling. In many countries, these rights are protected by specific instruments to facilitate the integration of members of underprivileged groups. A first set of standards for the protection of people with disability is enshrined in the international documents that recognise the equal rights of all members of society. Of particular note at an international level are The Universal Declaration of Human Rights of 1948 and the International Pact of Economic, Social and Cultural Rights of 1966. At a European level the European Social Charter of 1961, the Treaty of the European Union, and the Charter of Fundamental Rights of the European Union of 2000 have been particularly useful. The importance of these texts stems from the general objectives they establish; these have, in turn, served as the basis for other texts such as Resolutions, Recommendations, Agreements and Reports, that address the subject of disability in more detail. It was during the last quarter of the 20th Century that the United Nations began to direct more attention to the plight of people with disability. Through the Declaration on the Rights of Disabled Persons of 1975, and the preceding Declaration on the Rights of Mentally Retarded Persons of 1971, the Member States took on the commitment to take measures to help improve the standard of living of citizens with disability. Policies included promoting full employment and the necessary conditions for progress and development in economic and social affairs. Thanks to others aimed at protecting the war-wounded and the victims of labour-related accidents, the international community seems to be becoming aware that it must do more to safeguard the rights of people with disability. The great value of the first of the Declarations mentioned above is that it recognises that people with disability “have the right to enjoy the measures destined to allow them to achieve as much autonomy as possible” and the right to “medical, psychological and functional attention..., education, training and professional re-adaptation..., to aids, advice and placement services and other services which will ensure...their social integration or re-integration”. Perhaps it was during the work on these documents that the importance of the organisations representing people with disability was recognised for the first time: these organisations were extensively consulted during the process, and were able to make substantial contributions to the documents developing the rights of disabled persons. But the great quantitative leap in the intervention of the United Nations came with the General Assembly’s proclamation of 1981 as the first International Year of Disabled Persons. The slogan for the Year was “Full Participation and Equality”, and during the proceedings, the period 1983/1992 was proclaimed the United Nations Decade of Disabled Persons. These initiatives laid the groundwork for the adoption of measures of all kinds to promote the social integration of people with disability. Among these measures was the United Nations’ own World Programme of


Action Concerning Disabled Persons whose objective was “promoting efficient measures for the prevention of disability, promotion of rehabilitation and the realisation of the objectives of the full participation of people with disability in social life and for the development of equality”, which “means opportunities equal to those of the rest of the population and an equal participation in the improvements in the conditions of life...”. This important programme is a milestone in the role of the United Nations in its fight for a fairer world for people with disability. In its Article 21, the Programme recognises that rehabilitation measures by themselves are not sufficient, as it is often the person’s environment that determines the impact of a disability. This article states that often a disabled person’s environment denies her the same opportunities as the rest of the population in such fundamental aspects of life as education, employment and housing. Numerous other recommendations were presented during this period with the aim of facilitating the execution of the World Action Programme. Of major importance among these was the Resolution that approved the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities in 1993. Any policy for social integration must include employment as a key element. This has been widely recognised by international organisations, especially the International Labour Organisation (ILO) which has worked to develop legal instruments to protect the right to employment. Some of the instruments passed by the ILO are general in their overall scope, but include people with disability in their provisions. This is the case of Convention nº 111 and Recommendation nº 111 on discrimination in employment and occupation, both approved in 1958, in which discrimination in employment is prohibited on the grounds, among others, of disability. On occasions, the ILO’s instruments constitute legal standards, although more frequently, they provide sets of guidelines that can be used by individuals and groups to fully develop opportunities in obtaining employment, and achieving acceptable working conditions. Convention 111 falls under the first category. It is a legal standard which is directly applicable in the States which ratified and published the agreement. It is interesting to note that it is not only aimed at protecting against discrimination, but also promotes measures to directly counter the effects of discrimination. It legitimises the use of these measures and considers them non-discriminatory when they are aimed at overcoming a disadvantage or disability. The ILO’s Convention 159 concerning Vocational Rehabilitation and Employment (Disabled Persons), of 22 June 1983, and the accompanying Vocational Rehabilitation and Employment (Disabled Persons) Recommendation, 1983 (No. 168), contemplate a series of positive measures which, along the lines of Convention 111, cannot be considered discriminatory with respect to workers who are not disabled (article 4 of Convention 159). The philosophy behind these instruments is that the resources available to people with disability should be, as far as possible, those normally available to the rest of the population. While this principle calls for mainstreaming issues related to


disability, it does not exclude attention to the special needs of the disabled through specific services or programmes. The Council of Europe has also addressed the question of disability. After approving the Partial Agreement on Social Affairs and Public Health, the Council set up a Committee to examine and promote the professional readaptation and re-integration of people with disability, and these initiatives culminated in the European Social Charter of 1961. Article 15 of the Charter requires the Member States to adopt measures to provide professional training and professional and social re-adaptation through employment, either in the mainstream or the protected labour markets, by offering incentives to employers. The new focus inspired the initiatives of the Council of Europe, brought together in Recommendation R92-6 concerning "A coherent policy for the rehabilitation of people with disabilities " (adopted by the Committee of Ministers of the Council of Europe on 9 April 1992). These are similar to those laid down in the Standard Rules of the United Nations. From an initial approach centred on physical and therapeutic re-adaptation, where the medical field played a crucial role, more global aspects began to be considered. These were aimed at the social integration of people with disability at all levels. Yet, the far-reaching aim of these efforts does not stop at ensuring that people with disability enjoy all their rights and freedoms; it goes further, by placing people with disability at the helm of their own re-adaptation, and claiming recognition of their right to be different. Although the major thrust of the European Union has been economic integration, its creation has helped social policy advance steadily. The Treaty of Amsterdam introduced an explicit provision into the Treaty of the European Union in its Article 13, addressing the fight against discrimination in various fields, among others, in the area of disability. The new Treaty of the European Union requires an annual examination of the situation of employment and requires the transposition of directives into national policies. The European Strategy for Employment, established in the current Treaty of the European Union, states that the Common Directives for Employment, approved by the Council, will be the general framework for coordinating the employment policies of the Member States, which must write and apply National Plans of Action in favour of Employment, supported by the Structural Funds. The four cornerstones of the European Strategy for Employment are: a)To improve the capacity of citizens to join to labour market, especially with regard to the long-term unemployed and youths. b)To develop the entrepreneurial spirit. c)To encourage the capacity of adaptation in both workers and companies.


d)To reinforce policies for equal opportunities. In 1996, the European Commission issued a Communication entitled “Equality of opportunity for people with disabilities - A New European Community Disability Strategy”, which was approved by the Council by means of a Resolution in December 1996. This document concentrates primarily on eliminating the environmental barriers that constitute obstacles to the full social participation of people with disability in the labour market, rather than on the functional limitations of people with disability themselves. According to the Eurostat Household Panel Survey of 1996, the probability of having a job or business is 62% for Europeans aged between 16 and 64, but only 46% for persons with a mild disability, and 24% for the seriously disabled. In the year 2000, the Commission approved the Communication “Towards a Barrier-Free Europe for People with Disabilities”, and within the document’s non-discrimination package, it adopted a Directive that calls for setting up a general framework for equality in employment and occupation. The Directive is an important advance in the fight for equal opportunities for people with disability. It will oblige the Member States to establish an adequate framework, not only to protect people with disability against direct discrimination, but also to implement positive action against indirect discrimination of people with disability. It is a Directive that will surely be far-reaching in its scope as, once it is transposed into national legislation, it will make it compulsory for companies to adapt the workplace so that workers with disability can carry out their tasks normally. In America, the Organization of American States approved the Inter-American Convention on the Elimination of all forms of Discrimination against Persons with Disabilities on 7th June 1999. Twelve countries had ratified this convention at the time of this report. In the 21st Century, people with disability will have recourse to an International Agreement for the protection and promotion of the rights and dignity of disabled persons under the auspices of the United Nations, whose General Assembly approved a resolution in this sense, on 30 th November 2001. This resolution was presented by the Government of Mexico, with the support of 24 countries. In order to draw up this agreement, it was decided to establish an open ad hoc Committee in which all the Member States and observers of the United Nations could participate to promote the preparatory work for the Agreement. 3.4. National Policies and people with disability

The majority of national policies on disability are based on the World Action Programme and the Standard Rules of the United Nations. Industrialised countries usually have more advanced policies on disability than developing nations, although in both cases the traditional services and strategies for assistance are being complemented by non-discrimination legislation and


legislation to guarantee equal opportunities. For example, in the United States, where the disabled population registers an unemployment rate of 70%, the ADA, Americans with Disabilities Act, was drawn up. This piece of legislation has made major advances in the area of non-discrimination. Its intention is to provide guarantees for disabled persons in economic and social areas by explicitly protecting their right to employment, access to public services and to telecommunications. In order to avoid discriminatory situations in access to the opportunities offered by new technologies, the President of the United States presented the Freedom Initiative at the beginning of 2001, as a tool to facilitate social and labour integration in a new labour market characterised by the adoption of new technologies. There is a similar law in Australia that ensures that people with disability have the same rights, options and opportunities as the rest of the Australian population, including the right to take part in the activities of the community and the right to dignified employment. This principle states that all discrimination against people with disability is illegal, as laid down in the Disability Discrimination Act of 1993. Great Britain passed a law in 1995 that makes it illegal to discriminate against people with disability in any way with regard to employment, the provision of goods and services and the purchase and rental of lands or properties. British companies and service providers must take reasonable steps to ensure that there is no discrimination against people with disability. In Denmark, the principle of equal treatment for people with disability was approved by the Danish Parliament in 1993, enjoining all public and private authorities and companies to respect this principle. Developing countries have the furthest way still to go. Of the 16 countries with low income levels that replied to the United Nations survey between 1995 and 1996, 75% stated that they had policies in favour of people with disability, compared to 94.49% of the 39 countries with medium incomes, and 81.7% of the 24 countries with high incomes. Despite their limited resources and recent political histories, these countries have adopted the most advanced aspects of policies for people with disability, taking into account the recommendations of the UN in its World Action Plan, the Standard Rules and the recommendations of the World Health Organisation and the ILO. However, there are many cases where these relative advances in the social integration of people with disability have not become reality. In 2001, the Internet newspaper Disability World published a report which denounced the low level of access of the 60 million Chinese people with disability to university education. The dozens of universities in Beijing have only admitted 236 students with disability in the last five years and, according to the reporter Miriam Donohoe, in Beijing thousands of Chinese students must submit to a medical examination prior to University entrance. The Ministry of Education has


published directives which indicate the standards for physical conditions required in all candidates for further education. These provisions establish that people with even relatively unimportant impairments are barred from studying certain subjects. For example, people whose legs have a difference in length of 5 centimetres or whose backbone has a curve of more than 4 centimetres cannot study marine sciences, agriculture, forensic medicine, civil engineering or geology. According to the Report “Victim Assistance” drawn up by Handicap International in 2000 on the damage caused by anti-personal mines, only 1 out of the 69, fundamentally developing, nations where there had been incidents linked to this kind of weapon, has explicit policies or legislation for people with disability. Some countries include articles in their Constitutions to protect people with disability from different kinds of discrimination, but they have no specific legislation, or have insufficient means to enforce these articles. Other countries have recourse in common laws with specific amendments to guarantee equal opportunities. 3.5. Social changes and disability

The social and demographic changes that swept the 20th century gave rise to new ways to structure and organise society. The role of women has been redefined, masses of people have migrated from farming communities to cities, our life expectancy is longer and we enjoy better quality of life thanks to medical and technological advances. Towards the end of the 19th century, women began to assume a new role in many aspects of society, and brought down the barriers that had kept them out of public life, from political spheres, to the labour market. This process, however, was far from homogeneous throughout the world, and the cultural and religious characteristics of different societies dictated the rate at which women conquered new frontiers. Within the European Union, for example, there are still more women in the labour market in Scandinavia than in the Mediterranean countries. A comparison of the role of women in developed and developing countries reveals even more striking differences. Men and women play similar roles in public life fundamentally in economically developed countries, whereas in developing countries, the role of women in public spheres continues to be secondary. There are approximately 300 million women in the world who suffer from some kind of physical or mental disability. In developing countries three quarters of the people with disability are women, and between 65% and 70% of them live in rural areas. Although women with disability account for 10% of all the women in the world, the health and rights of this collective are frequently overlooked altogether. Women with disability are discriminated against on two accounts: first, because they are women, and find themselves barred from many jobs, or are the victims of unequal treatment in other areas; second, because they are disabled. Furthermore, it is women – with disability or not -


who are expected to care for dependent members of the family, thus providing essential social services that should be the responsibility of the State. Women with disability should be able to enjoy all human rights and these should be guaranteed by international laws and customs. However, in many cases the reproductive rights of women with disability, the right to equality and to non-discrimination, the right to marry and to found a family and the right to physical integrity are not respected by national legislation. The personal development of women with disability can be thwarted in the face of this lack of guarantees. Medical advances and improvements in assistance have increased the life expectancy of the population. This has contributed to the ageing of society as a whole, while improving the survival rate of people with disability who have generally had a lower life expectancy and worse quality of life. As was recognised by the governments meeting in the Second World Assembly on Ageing in Madrid, Spain, in May 2002, the world is experiencing an unprecedented demographic transformation. In the first half of the 21st Century, the number of persons over the age of 60 will increase by more than 600 million to almost 2,000 million, and it is estimated that the percentage of persons aged 60 or more will more than double, going from 10% to 21% of the general population. This increase will be greater and quicker in developed countries, where it is expected that the elderly population will multiply fourfold in the next 50 years. According to the 1995 report of the United Nations Population Fund, in the early ‘50’s, in developed countries couples were having an average of 2.8 children; the average is currently 1.6. In less advanced regions, this rate has decreased from 6.2 children per woman in 1950 to a little below 3 at present and, according to estimates, the figure will be reduced to less than 2.1 by 2045. In the last 50 years, the sharpest fall in the birth rate has occurred in Latin America (from 5.9 to 2.7) and Asia (from 5.9 to 2.6). The decline has been less rapid in North Africa and the Middle East (from 6.6 to 3.5), and much slower in Sub-Saharan Africa (from 6.5 to 5.5). This demographic transformation means that our societies have to face the challenge of providing increasing opportunities for the general public, but especially for the elderly, if they are to get the most out of their abilities and participate fully in all social aspects throughout life. In developed countries, the elderly share many needs, and have many similarities with people with disability, and we must bear in mind that in these countries the ageing of the disabled population means that new, specific requirements will appear, such as early retirement, tutelage of the mentally disabled and the need to care for more dependent members of society. All of these changes have coincided with an intense process of urbanisation. The percentage of persons who live in urban areas increased dramatically in the second half of the 20th Century, particularly in less developed regions. It is estimated that by 2005 more than half of the world's population will live in


urban areas; in less developed regions this threshold is expected to be met before 2015. This process of urbanisation is, in many areas, taking place without any kind of planning and is characterised by a lack of structures and resources. In developed countries, the majority of the disabled population live in urban areas with adequate access to social aid services, with appropriate economic levels and significant levels of accessibility to their surroundings. In less developed regions, on the other hand, the majority of people with disability live in places where access to social services and rehabilitation is difficult, where there is a lack of infrastructures, where the urban areas are not subject to controlled planning and where no attention whatsoever is given to ideas like “design for all”.


Access to education, employment, social, health and cultural opportunities, transport and information is, among other things, a basic right that many people with disability are unable to exercise, or cannot exercise under the same conditions as other people. Disability is, therefore, a question of human rights, and nondiscrimination and positive action are key elements to guarantee these rights. Slowly but irreversibly, societies have found ways to combat the many forms of discrimination suffered by people with disability. This Report examines the different areas relevant to the participation of people with disability in society (education, employment, security and social protection, technological change and medical and scientific advances, leisure and culture, and active participation in citizenship and development), showing solutions and instruments that are already available in some of our societies and that could be widely disseminated through the right policies and programmes.

1. DISABILITY IN THE PERSPECTIVE OF HUMAN RIGHTS 1.1. The rights of minority groups

While the globalisation process is contributing to strengthening the principles upon which inclusive democracies are founded, it is also exposing the fact that majority rule often overlooks the rights of minority groups. Today we have before us a challenge, which also presents an invaluable opportunity: Extending to all social minorities the same rights that the majority has enjoyed. The rights of the majority have traditionally been more readily recognised by doctrine, so the task before us is to develop a theory of human rights capable of including those aspects that are specific to each minority group. This may mean compiling a catalogue of the rights of each group, detailing their specific characteristics, because, while all groups of people share points in common, certain aspects peculiar to each one will require greater theoretical and practical precision. If this goal is to be reached, all of society’s members, as one human family, will have to make a concerted effort to uphold the rights of minorities, including people with disability. For this to be effective, formal and material protection will have to be specifically granted minority groups.


Today our societies have become aware of particularly vulnerable groups-women, children, ethnic and racial minorities--and have made their defence a priority. However, it is striking to see that in many countries ethnic and racial minorities number far fewer than people with disability, yet their influence on public opinion, policies and the assignation of resources is far greater than that of the disabled. This can be explained by the work of a well-synchronised international movement operating through different worldwide networks that has been successful in promoting the rights of these minority groups. 1.2. Non-discrimination and positive action, the keys to guarantee the rights of people with disability

Many people with disability are unable to exercise their basic human rights when they are denied access to education, employment, healthcare, culture, transport and information, among other things. It is precisely because they cannot exercise these rights to the same extent as other people that disability is now recognised as a human rights concern. In two of its articles in the section entitled “Equality”, the new Charter of Fundamental Human Rights of the European Union makes specific mention of people with disability: In the first, it prohibits discrimination, and in the second, it recognises the right of persons with disabilities to enjoy measures that favour their social integration. In the framework of the United Nations, the human rights aspects of disability have also been consolidated. A current proposal is underway to draft and pass a United Nations Convention covering the rights of the almost 600 million people with disability in the world. The call for a specific Convention concerning the rights of people with disability constitutes the most significant international initiative in the disability sector to date. The creation of this instrument would advance the legal, political and conceptual framework for the field of disability, combining the elements of non-discrimination with positive action. When this work is successfully completed, it will constitute a veritable landmark in the history of people with disability and it will be especially relevant for people with disability in developing countries. In its final report of August 2002, the Ad Hoc Committee responsible for analysing the proposals concerning the creation of the Convention recognised that the initiative would be a substantial step towards allowing people with disability to fully and effectively exercise all of their human rights. A specific Convention is important for the following reasons: − A Convention would draw the world’s attention to the fact that people with disability possess the same human rights as the rest of society. Although the disabled are not usually formally excluded from generally


accepted human rights, in practice in many countries, rights do not seem to apply to people with disability, or at least, to certain groups of people with disability. − A Convention would provide the necessary tools for people with disability to access the complete range of human rights: civil, political, economic, cultural and social rights. Currently a series of barriers prevent access to these rights, and only a Convention that takes this reality into account will be able to stop the systematic violation of these rights. An example of how human rights are violated can be seen in the right to vote. It is not only a question of eliminating legislation that prohibits people with disability from exercising this most fundamental of human rights, but also of making all the necessary changes in the electoral processes so that persons with disabilities can exercise this right under the same conditions of privacy as other voters. Each one of the human rights will, therefore, have to be analysed from the viewpoint of a person with a disability, identifying each of the barriers for the different groups of disabled people so that they will be able to exercise these rights in the same way as the rest of society. This will means promoting measures to eliminate the barriers which prevent this from happening today. − A Convention would provide a special mechanism for supervising and monitoring the effective implementation of its content. This would require periodic reports from the Member States, and a review of complaints from individuals and NGOs concerning the violation of human rights. − A Convention would significantly strengthen the role of the NonGovernmental Organisations representing people with disability in ensuring that their members are able to exercise their rights. This Convention would provide a formidable instrument to change the image society holds of people with disability. People with disability must be seen as holders of the same human rights as everyone else, and society must make whatever changes are necessary for them to be able to enjoy these rights under the same conditions as their fellow-citizens. It is not a question of charity; it is a question of human rights. With regard to this last point, a proposal has been made to grant people with disability a specific right: free access to rehabilitating technologies. Given that highly efficient technological aids would lead to greater social integration, the importance of this human right and its promotion in all areas would help provide access to these technologies to all disabled persons for whom they are out of reach. In many countries, full or partial financing is restricted to a limited catalogue of technical aids for rehabilitation, and technologies of the most recent generations are usually not covered because of budgetary constraints. Since


people with disability often have no access to these technologies, they are unable to avail themselves of their benefits. This situation is widespread and all too common even in countries with medium to high degrees of development. The challenge is to turn this right into a political priority throughout the world. Governments must understand we are not requesting a luxury, but simply asking for the basic needs of millions of human beings to be met: There are technologies that would go a long way to alleviating the problems of many people with disability, but that are beyond the grasp of the people who require them. Granting this right would be the final decisive step in our move towards a high quality collective life based on human cooperation and solidarity.

2. EDUCATION AND LIFE LONG LEARNING FOR ALL Education is a fundamental aspect of social integration for everyone, and it is no less so for people with disability. This has been recognised in international documents and declarations made by various organisations: the United Nations, UNESCO, the World Bank, the Organisation for Cooperation and Economic Development, the Organisation of American States, the European Commission, etc. Nonetheless, in the area of education, there is still a lot of work to do. In developed countries like the United States, Canada, Australia or Western European countries that have been trying to eliminate barriers for a number of years, despite an increase in the number of students with disabilities taking part in higher education, people with disability are still under-represented in educational circles compared to the general population. The percentage of students who abandon their studies or change centres is significantly higher among people with disability than the rest of the student population. Furthermore, it is a fact that students with disability tend to choose post-graduate courses of study that take less time to complete. As an example of what is happening in Europe, according to data provided by Eurostat referring to 1996, only 9.3% of persons with serious disabilities carry out university studies in the European Union, as opposed to 17.7% of persons who suffer from no disability and 14.2% of persons who declared themselves to be slightly disabled. This inequality is still greater in less developed countries. For example, in Central America the statistics confirm that people with disability receive less education, and drop out of education earlier than people without disability. Despite the efforts that have been made to correct this situation, educational opportunities are still limited for people with disability due to shortfalls in the programmes offered, and participation rates are, consequently, very low. Illiteracy is likewise higher among people with disability. At the other end of the spectrum, the higher the level of education, the fewer people with disability are enrolled. The UNESCO, with data for the year 2000, states that in Central


and South America, only between 1% and 10% of disabled children, depending on the country, have access to primary education. Integration in mainstream schools is practically non-existent and this situation is even worse in rural areas. 2.1. Integrated education

Not only are the levels of education for people with disability generally lower than those for persons without disability, people with disability are rarely integrated into the mainstream educational system. They are blocked by physical obstacles, such as architectural barriers and other, more transcendental barriers, such as a lack of sensitivity towards the special educational needs of students with disability or their acceptance in the ordinary classroom. Few imaginative measures have been deployed to make this integration reality and few proposals have been forwarded to establish the mechanisms necessary for education in inclusive environments. These difficulties persist from early education throughout the entire cycle. Efforts and policies geared towards mainstreaming education have been significant in the majority of Western European countries and the United States since the nineteen sixties and seventies. However, there are still appreciable differences between what these countries recognise as special educational requirements. These may go from traditionally defined physical or mental disabilities, to difficulties in learning and disadvantages derived from poverty and other kinds of social exclusion. In developing countries, different religious or aid-promoting organisations have followed the old model of segregated education and, when governments have accepted their responsibility for the education of children with disability, they have continued along the same lines. The situation improved somewhat following the publication of the Standard Rules, when governments began to increase their budgets for special education, although in-depth reforms aimed at integrating education have yet to be implemented. However, if schools are to become truly integrated and inclusive environments that respond to the special educational needs of children with disabilities, a major change in attitude will have to take place in all the organisations involved. The UNESCO, with its contribution Education for everyone, has already established integration, participation and the fight against exclusion as the keys to achieving equal opportunities in education for children with disabilities. The “Declaration of Salamanca and the Framework for Action on special educational needs”, approved in the UNESCO conference of 1994, details these principles, along with a series of directives for action on the national, regional and international levels. This document continues to provide guidance and benchmarks for organisations changing their policies to favour an integrating educational system.


“The main aspect of the Framework of Action is that schools should accept all children regardless of their physical, intellectual, social, emotional, linguistic and other conditions. Both disabled and gifted children should be accepted, children who live in the street and children who work, children from remote settlements or nomads, children from linguistic, ethnic or cultural minorities and children from other discriminated groups or less-favoured regions. All of these conditions give rise to a series of challenges for the school systems. In the context of this Framework of Action, the term “special educational needs” refers to all children or youths whose needs derive from their capacity for, or difficulties in learning. Many children have difficulty in learning and therefore have special educational needs at some time in their school career. Schools have to find a way of successfully educating all children, including those who are severely disabled. It is generally agreed that children and youths with special educational needs be included in the educational plans drawn up for the majority of children. This idea has given rise to the concept of the integrating school. The challenge facing these integrating schools is to develop a teaching programme focussed on the child, which is capable of successfully educating all the children in the school, including those suffering from serious disabilities. The merit of these schools is not only that they are able to provide quality education for all children; the creation of these schools is a significant step towards changing attitudes of discrimination, creating communities which accept everyone and integrating societies. Declaration of Salamanca and Framework for Action on special educational needs. UNESCO. 1994

Likewise, the OECD declared inclusion to be the best option for students with special needs. Thanks to these advances, integrated education has begun to receive more attention in various countries. As a reference, the UNESCO report of 1995 concerning special educational needs states that the number of countries which expressly contemplate integration in their education policies was 92% of all those providing information. This figure dropped to only 75% in 1998. Despite promising examples of good practices in integrated education, we must continue to work to systematically integrate educational systems to obtain the results pursued. There is evidence of the difficulties experienced by disabled students and their families when they are included in mainstream schools, but there are also many cases that demonstrate the benefits of inclusion when the associations for people with disability, parents and specialised teachers all work together to design new formulae and models. Furthermore, the heterogeneity of the disabled population is at once a difficulty to be overcome, and an opportunity. No one educational pattern adapts to all disabled people, and different needs require different remedies. An open and flexible school must be creative if it is to offer solutions based on the principles of integration, individualisation, and mainstreaming. Additionally, schools must respond to the special educational needs of all their students in order to allow each one to fully reach his or her capacities and potential. Each and every child, whether with or without disability, has unique capacities and potential that must be fully developed.
It is unlikely that special education schools will disappear, but their role will be transformed


and they will be converted into specialised environments for students with serious disadvantages. They will also serve as centres of resources for orientation and training, which will contribute effectively to normalisation (families, members of the community, service suppliers, professionals, bureaucrats, Administration, etc.) and the planning of installations and programmes for person with serious and multiple disabilities. Dr. Thakur V. Hari Prasad, Chairman of the Rehabilitation Council. India.

Technological aids, methodologies and strategies that are oriented to the individual needs of each child in the classroom greatly facilitate the participation of children with disability within a less restrictive environment. Experts have collaborated to develop initiatives to promote inclusion in mainstream schools. Through these, pilot programmes incorporating good practices have been tested in schools or groups of schools and specific strategies have been assayed. Simple strategies like training a group of teachers who, in turn, become instructors for certain special skills like sign language are producing good results. Other simple measures have been proposed, such as adequate remuneration for teachers, support for specialist teachers so that they can cover the needs of certain students as a first step to their inclusion in the ordinary classroom, opening more training facilities to better prepare new teachers to work in inclusive settings, developing the right teaching materials and sharing experiences and information on improved practices. Other crucial resources can be found through the inclusion of parents, associations for people with disability, professional associations and specialised institutions in the mainstream educational process. This educational focus is also supported by research conducted in less developed countries. Studies by the World Bank in Asia have shown the personal, social and economic benefits of including students with special educational needs in the mainstream. Furthermore, figures show that disabled students can be educated successfully and more economically in these ordinary centres rather than in specialised institutions. In the future, it is not likely that special education centres will be closed, although their role will be changed. They will become specialised centres for students with serious disabilities, and will act as training centres for families, members of the community, service providers, professionals, the Administration, etc., with a focus on effective mainstreaming. They will be used as planning centres for programmes and installations for persons with severe disabilities. Students with disability are not the only ones who will benefit from mainstreaming. For the educational community as whole, there are obvious benefits to be reaped from sharing knowledge and skills on a regular basis, through teacher exchanges between ordinary and special education settings. In countries where mainstreaming is widespread, successful integration is at times difficult because there is not enough support in the classroom. Because


of these problems, some parents have turned their backs on integration and opt for special education to ensure that their children receive the care they need. Integration requires an individualised curriculum which must be devised by the centre’s teachers, tutors and administrators. When adaptation is impossible, specific parallel classes should be given, but always with the purpose of ensuring that children with disability spend as much time as possible with other students. The problem of integration does not stop after successful mainstreaming in primary education, but must continue throughout secondary and higher education as well. Opportunities for integrated education must be available for students with disability at all subsequent levels and special attention must be paid not only to educational aspects but to physical accessibility as well. It is paradoxical that on too many occasions a student with disability who has successfully completed primary and secondary education with far more effort than his non-disabled peers suddenly comes up against a final, insurmountable obstacle in the form of architectural barriers that prevent him from accessing further education. Mainstreaming does not benefit students with disability alone. Specialised professionals have traditionally stressed the advantages of integration for students with disability, but they have often overlooked the benefits for the rest of society. Globalisation is eliminating frontiers of all kinds: from political, racial, religious, ideological to physical perspectives. This means we will have to adopt new systems to help us learn how to live together with people who are more and more different from us, yet who through this diversity bring different experiences and talents. Successful adaptation to this new reality will mean an exponential increase in our ability to take full advantage of globalisation, and to grow as supportive individuals living in a global community. When in September 2001, the Director General of the UNESCO, Koichiro Matsuura, announced the launch of an emblematic educational programme focused on inclusion, this sent the disabled community a ray of hope that progress will be made. Likewise, the Madrid Declaration, on the occasion of the European Congress on People with Disability held in Madrid in 2002, proposed Non discrimination + Positive Action = Social Inclusion, a theme that is especially applicable to education.


Schools should take a relevant role in distributing the message of understanding and accepting the rights of the people with disability, in helping to dissipate fears, myths and erroneous concepts and supporting the efforts of all the community. They should widely develop and distribute educational resources to help students to develop an individual sense of respect for their own disability and the disabilities of others, and they should help to recognise differences more positively. It is necessary that we achieve education for all in terms of full participation and equality. Education directly conditions and influences the future perspectives of personal, labour and social plans, and so the educational system should be a key place for personal development and social insertion which will permit that, in the future, children and youths with disabilities will become more autonomous, and as independent as possible. The educational system should be the first step in achieving an integrating and non-exclusive society. Declaration of Madrid. 2002.


Education. What are our aims?

The ultimate aim of any educational process is to equip people with the means to live independently and autonomously, and this is no less true for people with disability. Integration means that people with disability will join the labour market and participate in all of society’s day to day activities in the same way as the rest of the community. As everyone else, they seek an education that will allow them to do this. Financial restraints are often cited as an excuse for not providing people with disability the services they need. Economic excuses are brandished to explain the difficulties people with disability experience, and to justify the government’s inertia in taking the necessary steps to confront them. Nonetheless, these arguments show that the cost of improving the education and training of people with disability is not sufficiently understood. The savings derived from having fewer people living on state pensions, as opposed to allowing them to work and live independently, have not been analysed in sufficient depth. Compared to the expense of maintaining dependent citizens, the cost of integrating people with disability into the educational system and the labour market is minimal, especially when we consider that people who work contribute to society. The social and economic gains would redound to the benefit of all. Fortunately, in recent years, significant advances have called into question established beliefs about the productive capacity of people with specific kinds of disabilities. Thanks to these changes in attitudes, many people with disability now have more opportunities for employment and integration. And results have proven that, with the appropriate education, people with disability can acquire the same skills, and develop the same talents, objectives and aspirations as anyone else. Access to better education is beginning to be understood as a prerequisite to


access to the labour market, and not only as a desirable goal in and of itself. Success depends on adequate training, combined with a thorough analysis of the needs of the labour market, to ensure that people with disability offer competitive skills. In some countries, like Sweden, the institutions receiving subsidies to train people with disability are required to conjugate these two factors, and some are being converted into fully fledged training centres. These developments have led us to question whether training provided in special centres for specific disabilities are really meeting the needs of the disabled population. Can preparation in a sheltered environment, to work in a sheltered environment really prepare people with disability to get, and keep a job in the mainstream labour market? Improvements in basic education for people with disability must be accompanied by a rigorous analysis of the labour market to pave the way to eventual integration. Unemployed workers with disability should become familiar with the mainstream labour market as part of their training, and vice versa. Contact between the market and disabled workers would elucidate the training strategies that need to be designed to improve conditions for these workers, and transfer the concepts of integration and inclusion from the field of education to the labour market. These measures would serve to gradually phase out niches currently reserved for sheltered employment, retaining only those filled by the severely disabled, and open the door for people with disability to jobs under the same conditions, rights and obligations as the rest of the active population. Another form of education, known today as “life-long learning”, is indispensable for anyone who does not wish to run the risk of being excluded from the labour market. Before gaining employment, workers must acquire basic skills, but they must also keep abreast of changes in their profession if they are to keep their jobs. On-going training must be guaranteed for the employed to help them maintain and perfect their professional capacities, and avoid being expelled from the labour market. People with disability are even more at risk than others in this respect. Courses must be offered to all workers, including people with disability, to help perfect skills or acquire new ones and new technologies in the specific context of their current labour activities. The training process for people with disability should be considered as a single, continuous experience, where itineraries must be designed to help a person progress from acquiring the most basic skills, through to the most specialised. Training should really be thought of as a combination of life-long learning processes, especially adapted for people with initially low levels of instruction, with modules that teach skills and qualifications according to a logical pattern. Programmes need to prepare people to specialise within a family of jobs. To sum up, educational processes designed for people with disability must begin by filling in the gaps left by the deficiencies in the general educational system. After people have been brought up to par, they should concentrate on learning


an occupation. The special difficulties of groups of people who have a high risk of failure must be taken into account when designing programmes: Courses must be adapted to all kinds of disabilities; modules can be made longer, and given to smaller groups of students; intensive contact with new technologies must be provided; the skills necessary to get a job can be taught through simulation of the labour market in the classroom; students’ progress must be constantly evaluated in light of their opportunities to get a job. In other words, training must be focused towards joining the labour market.
A high percentage of unemployed disabled workers have no training at all. Neither do the great majority of the people with disability who are unemployed have a profession, nor have they taken part in vocational training programmes. Public institutions have always preferred to push this situation aside through assistance techniques which assume the failure of the system as being inefficient, without taking into account that there are other roads which, even when they move away from the general training and placement processes, are better adapted to the real circumstances of these disabled persons and which, following a specific process, lead to integration. More than twenty-five percent of the people with disability without standard training find work after taking part in vocational training programmes. Constantino Méndez Martínez, Director General of Fundosa Social Consulting, a company specialising in training and employment for people with disability, belonging to the Fundación ONCE (Spain).

We must accept that people with disability may need to learn at their own rate to achieve the same qualifications as other students, although this should never be reflected in the certificates awarded for the skills obtained. Diversity and difference have begun to be accepted as the new paradigms of reality, and they should also become the principles of public action and practices to promote integration and fight exclusion. An adequate training strategy is one that teaches us to "learn how to learn" individually and on an on-going basis. Likewise, it is important to encourage measures to help people with disability evaluate their own situation as, often, they are unaware that their level of education or training is insufficient to allow them to reach the labour market. Overcoming these deficiencies will help them increase the probability of finding employment and, consequently, of becoming socially integrated with equal rights and obligations. Another aspect to be taken into account is that people with disability must learn the techniques necessary to find a job. They often need someone to teach them to fill in a form or write a letter, to speak on the telephone or prepare for an interview. Many countries provide training in these areas, for example, through government employment offices, and some countries provide training for people with disability who are looking for work using similar techniques as those taught to the long-term unemployed. 2.3. Training in the Information Society

The Information Society presents us with new challenges and new opportunities. There is no question that new technologies will have a major


impact in promoting the inclusion of people with disability in the new Interactive Society. The growing importance of telecommunications and information technologies means that today's societies will be connected more and more through networks. The relevance of these networks will be determined by the social and economic applications that pass through them, thus turning the new technologies and their applications into the pillars that sustain today’s organisations. Another important asset of the new information technologies is that they facilitate on-going learning, and it is clear that organisations become more efficient the more they learn. However, to be successfully applied, knowledge must be managed in real time, and it must reach all of an organisation’s members simultaneously. Different personal conditions and circumstances should never be a reason to exclude anyone from participating in these crucial processes, since they contribute to shaping the thoughts and actions of each society or human group. The development of collective intelligence is the principal capital gain to be obtained through investments in cables and programmes. Without this capacity, the new information technologies would loose much of their potential. However, developing human capital is not something that can be improvised, nor can it be done merely through material investments. It requires slower processes that involve all the different actors who will ultimately be the true driving force behind the growth of this new social capital - knowledge. In this context of growing opportunities on the one hand, but with the increasing risk of creating a dual track society that accentuates exclusion, on the other, certain users of the Information Society run the risk of encountering barriers to accessibility and equality. If we ignore this segment of the population, our collective intelligence will be mutilated, and we will miss the opportunity to build a truly Cognitive Society, sustained by the contribution of each and every one of its members. We cannot, therefore, simply reject what 10% of the population has to offer. Nor can we ignore members of society with age-related disabilities who have particular difficulties in accessing networks and the services available through them. If we wish to achieve the objective of living in societies that place high value on education and employment, and nurture a better, fairer and more supportive quality of life, we must pay special attention to disability when building the Information Society. It is only by taking into account the needs of all that we will be able to exploit these new opportunities to the fullest. Policies that train people with disability in the use of the new technologies and their applications in the Information Society must be encouraged and developed. People with disability must be prepared to take advantage of the new professional horizons that will open up. Furthermore, specific measures must be adopted to encourage the participation of these special users who, after all, expect to share in all the opportunities engendered by the Learning Society. One of the immediate benefits these new networks and applications offer is the possibility to learn interactively, by pooling experiences and


expectations. So, care must be taken to ensure that we pave the road to a Knowledge Society that is supportive and finds room to nurture the ideas and hopes of all of its members. The Digital Opportunity that President Clinton backed was developed very much with this focus. Another good programme in this field is e-Europe, which has been sensitive from the outset to the principles exposed in the Manifesto on the Information Society and People with Disability, drawn up by the European Disability Forum. This document reinforces the idea that people with disability should be leading players in the Interactive Society, and not merely the passive subjects of palliative aid programmes designed without any real knowledge of their circumstances. The Manifesto addresses issues ranging from education, employment, legislation, market forces, social utility, accessibility and availability. Sufficient funds must be earmarked to incorporate the concept of design for all into all new technologies if we are to keep from creating a digital breach that leaves some members of the community behind. The new technologies will have to be deployed with the intention of facilitating access to all. Otherwise, we will miss our opportunity to build a new society where everyone has a role to play in the development of collective intelligence. Accessibility is the key to allowing our collective intelligence to reach its fullest potential, because it is only then that all people be included in the process. One of the bi-products of the new technologies is that they will allow us to manage the development of personal capacities, and this will enhance the employability of all members of society. However, there is a downside to the new technologies that we must not forget. With the accelerated rate at which we are all expected to adapt to the rapid changes taking place around us, it would be very easy for anyone to acquire a functional disability that restricts active life, and anyone of us we may suddenly find ourselves on the other side of the digital divide. Promoting an inclusive digital society is much more than a gesture towards people with disability. It is a way of dispelling unfounded social prejudices, and a safeguard against forfeiting the contributions of certain members of society. Our collective intelligence will be regenerated and broadened in the measure that the networks permit the access of as many individuals as possible, with the confidence that this will contribute to the welfare of all, without exclusion or discrimination. Quite apart from being an affront to the human dignity of anyone who is left out of this process, any exclusion or discrimination would result in the impoverishment of society as a whole. 3. OPPORTUNITIES AND EXAMPLES OF INCORPORATION INTO THE LABOUR MARKETS
The basic problem


It can be affirmed that disability generally brings with it a state of impoverishment. In fact, the deteriorated economic situation of many of people with disability is tied directly to the difficulties in access to work, despite the fact that many people with disability are sufficiently capable of carrying out productive activities which are compatible with their condition. In other cases, the contracting of people with disability has even led to the employer's ignoring the level of minimum salaries, especially in the case of the mentally disabled. Not even the setting up of reserved labour quotas with economic and tax incentives for the employer has managed to overcome the basic problem, which is the employers' lack of awareness of the potential and talents of many of the people with disability who are looking for employment, which shows a deep-rooted sub-cultural mentality. I can't avoid mentioning that, in the face of this dearth of jobs for people with disability, the phenomenon of the micro-company has slowly been taking on among people with disability, showing the business acumen of some members of this group. On occasions, they also contract other disabled workers, showing that they are more assertive in the application of the rules of equality, evaluating their workers as exceptional, satisfactory, normal or poor in the same way as any other employer would do with a worker who was not disabled. María Soledad Cisternas Reyes, Lawyer and Political Scientist, Director of the Legal Programme on Disability at the Diego Portales University, Santiago (Chile)

The ILO estimates that there are some 386 million disabled people in the world who are of working age. These are people who have the potential to join the labour market and to contribute to the development of their communities as employees, independent workers or businessmen and women, and that is precisely what they wish to do. Some businesses have begun to discover this potential. Many governments have passed laws, established policies and developed programmes aimed at assisting people with disability who are looking for employment, helping workers who become disabled maintain their jobs or facilitating the re-entry into the labour market of workers who have lost their employment as a result of disability. In instances where governments have failed to act, organisations that represent people with disability have become the champions of employment for people with disability, aware of the gravity of the problem. Nonetheless, the reality remains that many of the people with disability who can and wish to work find themselves unemployed. The unemployment rate among people with disability is considerably higher than in the remainder of the active population, reaching 80% in some countries. Furthermore, when people with disability work, they frequently occupy jobs that pay less and offer few possibilities for professional promotion. The end result is that many people with disability live in poverty and their potential contribution to their families, companies and society is lost.
Second Class Citizens As a group, people with disability are second class citizens in the workplace practically throughout the world. Due to a combination of factors, including lower levels of education and training, together with a generalised series of prejudices, people with disability tend not to


work, or they do so in jobs that require little specialisation and have poor salaries. In general, the situation regarding employment for people with disability is bleak. The combination of inaccessible public transport, architectural barriers and the barriers caused by the attitudes of others, chronic unemployment and the lack of sufficient resources to help people with disability all means that the employment of disabled persons is very much a marginal activity. Furthermore, an important obstacle to progress is the lack of any general understanding as to the true capacities of men and women with disability, and this is true both for people with disabilities and people without. This creates a vicious circle, because, just as there are relatively few people with disabilities amongst the active population, there are also very few models of productive persons with disabilities. Some countries have legal requirements which theoretically oblige companies to contract a certain number of disabled workers. However, if they do not comply with these laws, the fines are generally so small that the laws are virtually ineffective. Even multinational conglomerates which generally contract men and women with disability in some companies do not do so in all countries. Sid Wolinsky, Disability Rights Advocates. California (USA)

This situation prevails because employers often believe that people with disability are unqualified for work, so disabled workers are not given the opportunity to prove them wrong. Other reasons include the fact that many people with disability have not had access to education or professional training, the auxiliary services they require are not available, legislation and policies in their countries do not facilitate their incorporation into employment and buildings and transport are not accessible. Likewise, many people with disability have accepted a certain culture of passivity, inspired by the circumstances that surround them, that leads many to think that they have nothing to offer the job market and are doomed to depend economically on subsidies or on their families. These and other obstacles are preventing many people with disability from finding jobs that will allow them to earn a living, maintain their families and contribute to the national economy. This is a great waste and an enormous loss, not only for people with disability and their families, but also for the business sector and society as a whole. It is a palpable and unjustified loss of human talent, a situation that short changes us all. 3.1. Changes in opportunities for employment

Thanks to the activism of the disability movement, significant changes in employment policies for people with disability have been introduced in recent years. More emphasis is now placed on providing labour opportunities and more resources are dedicated to ensuring access to jobs in both the mainstream and sheltered markets. These changes are due, to a large extent, to the pressure exercised by people with disability themselves and their organisations, which defend full inclusion and equality. A second important factor to explain these changes is an increasing awareness that the difficulties people with disability face when trying to obtain or keep a job are due more to the way in which the job is structured and organised than to the person’s


disability per se. With the right measures, these obstacles can be overcome. A third reason for these changes is the fact that governments and other agents are becoming convinced that the exclusion of people with disability from the workplace is an unacceptable economic waste. As a result of these changes in labour policies, in many countries people with disability currently enjoy a wide range of options for employment. They hold jobs in sheltered workshops, Public Administrations, supported employment settings, non-profit organizations, in the mainstream labour market and as self-employed workers.
The costs of passive policies The costs of subsidies to income for people with disability who are of working age are very high in those countries which have these kinds of subsidy. The costs of these subsidies calculated in recent years account for 6 percent of the GDP in Holland, 3.5 percent of the GDP in Germany and 2.5 percent of the GDP in France. In the United States, Social Security pays around 1,000 million Dollars a year to people with disability. These costs have increased greatly in recent years. In the United States, the two most significant aid programmes for people with disability of working age increased by 59% during the nineties, with an increase from 4 to 6.3 million of persons receiving benefit. It is estimated that if one percent of these 6.3 million people were to return to work, a saving of 2,900 million Dollars would be made. Besides the direct costs of paying subsidies to people with disability, there is also a significant cost for the national economy, derived from the fact that many people who can work are excluded from the labour market. The annual value of the GDP which was lost due to total or partial disability was estimated at 45,800 million Canadian Dollars in 1993, which represented 7.7% of the total Canadian GDP for that year (Health Canada, 1997). A study carried out by the World Bank used the same method as that used in Canada to calculate the loss in GDP for the whole world and the figure was between 1.37 and 1.94 billion American Dollars (Metts, 2000). Barbara Murray, International Labour Organisation


The option of sheltered employment

While sheltered employment continues to fulfil a role, innovative steps must be taken to favour the transition from sheltered to ordinary employment for those who are able to make this change. These measures are crucial to overcome the segregation imposed when people with disability are confined to the world of protected workshops and other sheltered situations. However, as any change in values tends to be slow, companies in the mainstream labour market will continue to resist and erect barriers to the incorporation of people with disability. Just as the road to full equality between men and women in employment, access to managerial posts and equal salaries is proving to be long and arduous, the road to the incorporation of people with disability, and particularly of women with disability, into the mainstream labour market will be even longer.


Sheltered employment will no doubt continue to constitute a step towards the mainstream labour market and remain a viable option for many disabled workers, particularly those with severe or mental disabilities. For these reasons, it is imperative to improve the quality and competitiveness of sheltered employment. In many countries, special employment centres, protected companies or vocational centres are effective instruments that provide employment to the severely disabled who would otherwise be excluded from the labour market. Providing adequate training for workers with disability and for the people who supervise them will be a key strategy for the future of sheltered employment. New forms of employment will also have to be created to diversify the services offered by these centres. On the other side of the coin, however, the significant role played by vocational centres as training resources for mainstream employment should be recognised. These pre-labour centres are an invaluable niche for workers preparing for employment in the mainstream setting. Appropriate regulation of the sheltered sector is, therefore, crucial to achieving the ultimate goal of employment for people with disability. For persons with certain kinds of disabilities (fundamentally persons with mental impairments), a protected workshop may be an excellent starting point for discovering skills. It provides an environment where workers can acquire job experience, while discovering what kind of work they are best suited for. 3.3. The transition to mainstream employment: innovative formulae for the inclusion of people with disability in the mainstream labour market.

Experience shows that the integration of a significant number of disabled people into the mainstream labour market is an objective well within reach. A wide range of measures have been developed to assist this process. These include quota systems that reserve employment for people with disabilities in public and private companies, training or vocational guidance, subsidies and tax incentives for contracting disabled workers. There are many measures or formulae that can enhance the employability of people with disability: 1The social agents must be more actively committed by supporting formulae like "enclaves of employment” or “supported employment”. 2Companies often decide to outsource part of their production processes or peripheral services by means of subcontracting. The flexibility afforded by these practices can facilitate employment for people with disability. 3In many countries there is a legal obligation on the part of companies to reserve a certain number of jobs for disabled workers or,


alternatively, to pay a contribution to a special fund that promotes employment of the disabled. Yet, there are other ways to support employment of people with disability: contracting supplies or services from a sheltered workshop, or making an economic contribution to public-use foundations working in the field of disability. In some countries, the public procurement of goods and services must meet conditions that ensure compliance with anti-discrimination legislation and regulations governing reserved employment by the companies supplying the Public Administrations. It is necessary to continue to explore all forms of collaboration with the business sector in general, through temporary employment agencies, for example. 4Many disabled workers do not adapt easily to ordinary employment and are more comfortable working in the Social Economy, through "self-help" schemes and specialised placement companies. To achieve the objective of integrating more and more disabled workers into the labour market, priority must be given to business initiatives that incorporate measures that fight against social exclusion by creating employment. Successful initiatives should always combine economic viability with the objectives of creating employment and improving living and working conditions for people with disability. 3.4. Quota systems

To promote employment opportunities for people with disability in the mainstream labour market, various European countries and, more recently, certain Asian countries, have introduced quota systems which oblige companies to reserve a percentage of posts for disabled workers. Firms that do not comply with this obligation are liable to fines or must contribute an amount of money to funds destined to finance professional rehabilitation and employment promotion activities. These quota systems do not exist everywhere. Some countries, like Sweden, Denmark, Norway and Finland, consider that the quota system contradicts their doctrine and traditions, and prefer methods aimed at persuading employers to offer employment opportunities to people with disability and providing people with disability seeking employment with the necessary training to enhance their skills, together with other complementary aid. Other countries, like the United States, Canada and Australia, fundamentally endeavour to ensure equality in access to employment and non-discrimination. Unfortunately, existing quota systems are not universally upheld, and governments and authorities remain impassive in the face of these violations. The reserved quota is not uniform and the percentage of posts reserved for disabled workers varies from one country to another. The quota usually


oscillates between 2 and 6% of a company’s pay bill; it may be calculated on the basis of the total number of employees in the company regardless of the number of work centres, or it may be applied in accordance with each work centre. Likewise, the quota normally only applies to companies with a minimum number of workers, usually between 25 and 50, as it is generally felt that small companies should be exempt from this obligation. In those countries where there is a quota system, a distinction is generally made between the public sector (employment provided by Public Administrations or organisms that report to them), and private employment (provided by employers from the private sector). The public sector usually has higher reserved quota than the private, because it is expected to have a greater moral obligation and commitment with regard to the incorporation of disabled workers. Generally, reserved employment is established by a legal disposition, especially when this provision requires discriminatory treatment against workers without disability, or positive discrimination. For the most part, positive discrimination is accepted provided it is based on a justifiable cause and that it is governed by sufficiently high legal standards. Nonetheless, while the obligation is established by law, in some countries collective bargaining procedures afford the social agents considerable room for manoeuvre with regard to establishing quotas in the different sectors or companies. The debate on the efficiency of a legally reserved quota is an old one that is far from resolved. On the one hand, where they exist, these legal provisions are not strictly enforced, a situation that might seem to imply that the incorporation of people with disability into the mainstream workforce has been a failure. However, it is also true that the very existence of this legal instrument to promote employment, has given disability activists a powerful weapon that they can adapt to the realities and circumstances of each individual country. In countries where a legally reserved quota does exist, the organisations of people with disability generally defend it, despite its limited effect. And in spite of its limited effectiveness, the reserved quota has opened the door to positive discrimination measures in different areas of labour legislation, and has settled the debate as to whether this kind of legislation is admissible. 3.5. Economic support for companies and workers

Employers have a crucial role to play in promoting mainstream employment opportunities for people with disability. Companies must also be instrumental in developing programmes to keep employees who acquire labour-related disabilities and in designing strategies for the re-entry of people who have lost their jobs due to the onset of a disability. Economic incentives to encourage companies to hire disabled workers or keep them on the workforce provide important instruments to promote employment. Just as it has been recognised that training and guidance in finding


employment are better investments than maintaining dependent citizens, this new focus is a result of the understanding that it is more effective to transfer as many resources as possible from passive policies (economic subsidies for situations of need and/or unemployment) towards measures that encourage employment. Subsidies for hiring people with disability have three purposes: to compensate for lower performance levels or the costs involved in hiring disabled workers; to stimulate contracting people with disability; and to cover, in part or totally, the costs of adapting the workplace to suit disabled workers. Subsidies can take many forms, from direct subsidies or aid with salaries, to tax rebates or lower Social Security contributions.

An alternative way of encouraging compliance with the directives on non-discrimination against people with disability in employment begins with the use of the directives in public acquisitions. Public organisms which award public tenders could demand that tenders will only be accepted from those companies which comply with the directives existing on nondiscrimination. In view of this requirement for the compliance of contracts, the social factors (and of the environment) could be evaluated together with the economic criteria (for example, price and quality) when taking decisions regarding the acquisition of tenders. Lisa Waddington. Maastricht University, Holland.

Workers may also benefit directly from subsidies. They can receive aid to open their own businesses, become otherwise self-employed or work under a Social Economy regime, acquire equipment or instruments necessary to improve mobility or receive adapted training. 3.6. Self-employment

Self-employment provides a fundamental formula to join the active population, particularly in developing countries where a large part of the workforce is selfemployed in either formal or informal sectors. Nevertheless, although selfemployment has a lot of potential for people with disability, particularly with the advent of tele-working and e-mail, little or no attention has been paid to this alternative until very recently. As part of their public employment services, many countries offer economic aid to people with disability who wish to start their own businesses. While undeniably helpful, these measures are not enough to ensure the success of a new enterprise. Apart from technical training, the entrepreneur will need to acquire skills in fields such as management and accounting, and the disabled businessperson may also need technical assessment and aid, and access to credit lines to purchase special equipment and materials. Public employment services can provide direct assistance to back these initiatives, or they can direct disabled entrepreneurs to the places where they can find the answers to these issues.



Supported employment

In the past, it was very difficult for people with disability to make the move from sheltered work settings to jobs in the mainstream labour market. While there have been cases of disabled workers who have been able to transfer experience acquired in a special centre to the ordinary market, there are many fewer than we would like to see. Recently, a new option known as "supported employment" has begun to be explored. This consists of accompanying the person with a physical, psychological or sensorial disability who requires support and supervision when finding, learning and maintaining a job. Supported employment facilitates the change from a sheltered setting to normal employment. In the beginning, supported employment programmes were aimed at people with intellectual disabilities, but experience has shown that this alternative is valid for any disabled person who is unable to access the ordinary labour market without assistance. As a result of these programmes, supported workers who make the shift successfully after a trial period are being contracted as permanent employees. Supported employment programmes have proven to be an effective way of facilitating the transition towards mainstream employment, and they may also serve as a valid alternative for people with disability who have difficulties in finding or keeping a job. Supported employment combines the personal aid given by tutors with other kinds of assistance. For example, a support agent may visit the workplace, either at regular intervals or upon the request of the employer, to prevent or rapidly solve any problems which might arise. The extent of supervision and aid provided depends on the needs of each person. 3.8. The role of the different social agents

Unfortunately, to date social agents like trade unions and professional associations have done very little to reinforce employment of people with disabilities, despite the primordial role these organisations have in regulating the labour market through collective bargaining and participation in the “social dialogue”. Although some very praiseworthy actions have been taken in a few countries, the trade unions and professional organisations have generally ignored the labour aspects associated with disability. People with disability have been treated as invisible members of society with regards to employment, and the organisations for people with disability have increasingly had to step in to fill this void. Unfortunately, this has given rise to misunderstandings and rivalry between the trade unions and the disability movement. The social agents must become more involved in expanding labour opportunities for people with disability. They should use their leverage to


request and set up programmes aimed at the inclusion of people with disability in the labour force. They should also use their consolidated social position to ensure compliance with the standards and regulations in force affecting employment and people with disability. In an effort to overcome their mutual misunderstandings, the trade unions, professional organisations and organisations representing people with disability should make the effort to cooperate and eliminate unnecessary confrontations. 3.9. Social responsibility and company ethics

In recent years, within the European Union and in other European countries, it has become obligatory for all companies participating in public tenders to prove that they uphold all existing standards for non-discrimination. When evaluating tenders submitted by potential suppliers, consideration is no longer given exclusively to economic aspects, but to the companies’ social track records as well. The historical precedents for this attitude go back to the 19th Century in the United States and United Kingdom. Then, certain religious communities like the Quakers began to express their social and ethical responsibility by linking their financial activities to “ethical investments”. They opposed participating in any investment related to the slave trade or the production of alcohol. The first ethical investment fund with social responsibility, as we understand it today, was created in the United States in 1971. The Pax World Fund responded to the demands of investors to exclude North American companies that benefited economically from maintaining the war in Vietnam. In the United Kingdom, it was during the fight against apartheid in South Africa that these funds were first introduced. Ethical Funds are having a direct influence on business behaviour and social and ethical responsibility. In countries where they have been implemented, these funds have become consolidated and they have a relevant impact on the trends of the financial market. According to reports provided by EIRIS, in the United Kingdom, data for 1999 indicate that the figure invested in these funds was 4,255 million Euros, rising to around 6,074 million Euros in 2000. In the United States, the capital invested in these funds increased by 60% between 1997 and 1999, reaching some 145,000 million Dollars by 1999. In the United Kingdom, the ethical criteria applied to determine which companies are eligible to be included in a fund most commonly call for the exclusion of the tobacco, alcohol, armaments and nuclear energy industries, and companies that do not uphold human and animal rights, sustainable development and environmental management. Positive evaluations are given to companies that have established labour relations programmes and promote labour health and safety, women's rights and the rights of ethnic minorities in managerial posts. Ethical funds and social responsibility transmit the message to the public that


investment decisions need not be governed exclusively by the criterion of economic profitability, but that they should take into account issues like social responsibility and ecology as well. Companies that adhere to these criteria also convey the message to their employees that they are valued according to parameters that integrate economic, social and environmental aspects. The Global Reporting Initiative has designed the Guide for the elaboration of Sustainability Reports to provide a uniform format that companies can use to furnish information to the government and society at large about the economic, environmental and social aspects of their activities, products and services. Since it was launched in 1997, the Global Reporting Initiative has made an effort to design and establish a global framework to provide information on aspects related to sustainability. The reports should include economic, environmental (impact of processes, products and services on air, water, earth, biodiversity and human health) and social aspects (including health and safety at work, stability of employment, labour rights, human rights, salaries and labour conditions in external operations). In response to the pressure exerted by groups in Civil Society seeking to promote sustainable development, social considerations are becoming more and more important in the business sector. In fact, international quality certification bodies have begun to draw up social responsibility standards. According to a recent study, 70% of all Europeans consider that the company, as a social institution, has responsibilities that go beyond strict economic activities; they believe businesses have an increasing responsibility to contribute to improving the societies in which they conduct their activities. Companies have developed different types of programmes to respond to the expectations of all of their stakeholders. They are establishing internal codes of conduct, making economic contributions to different social programmes, hiring workers with disability, sponsoring community initiatives and social campaigns, supporting the management of social organisations, making donations in kind, conducting marketing campaigns for a cause and participating in voluntary work. Bearing these considerations in mind, the SA 8000 standard was established in 1997 by the Council on Economic Priorities Accreditation Agency (CEPAA). The panel of experts was made up of members of organisations that represented the entire spectrum of stakeholders in business (trade unions, manufacturers, retailers, academia, NGO's and consultants and certification organisations). This standard is aimed at the manufacturing industry, although it is also appropriate for the services sector as well. A company with different work centres must apply for the certificate for each one of them to ensure that they all comply with the standard. Likewise, subsidiary companies are not audited automatically as part of the certification process, but must participate in the certification procedure independently. The SA 8000 standard requires that certified companies comply with national


legislation and any other applicable law, and that they respect the principles established in a series of international instruments, including various agreements and recommendations of the ILO concerning forced labour and slavery, the right to collective bargaining, equal wages for men and women carrying out the same work, minimum age limits, safety and health at work, rehabilitation and employment of workers with disability, the Universal Declaration of Human Rights and the United Nations’ Convention concerning children's rights. When one of these subjects is addressed by both the standard and the applicable legislation, the most demanding directive prevails. In July 2000, the United Nations launched the World Pact on Social Responsibility. This initiative was promoted by Kofi Annan in the World Economic Forum held in Davos (Switzerland) in January 1999. Adhesion to the World Pact is voluntary and is aimed at providing a general framework for promoting collaboration between different social actors to strengthen social responsibility, through committed and creative business leadership. The Pact calls for companies to adopt universal principles in the areas of human rights, labour standards and the environment. Apart from businesses, the Pact has been signed by the United Nations, different workers' associations and nonprofit organisations, among others. Its objective, according to Kofi Annan, is “to contribute to the adopting of values and principles which give the world market a human face”. In the European Union, the debate on the social responsibility of companies began in 1995, when Jacques Delors, the then President of the European Commission, and a group of European companies published a manifesto of companies against exclusion. This led to the creation of a European network, CSR Europe, to foster a dialogue between companies with the intent of sharing good practices on aspects related to social responsibility. Five years later, in the Council of Europe in Lisbon in March 2000, corporate social responsibility was placed at the top of the European Union’s political agenda. For the first time, the Heads of State of Europe made a call to companies to show a sense of responsibility to help comply with the European Union’s new strategic objective of becoming the most competitive and integrated economy in the world. In July 2001, the European Commission adopted a Green Paper, and a year later, it adopted a Communication on the European strategy for corporate social responsibility, which was aimed at promoting the contribution of the business community to sustainable development. In this Communication companies were asked to take on a new social and environmental role in a global economy. The Communication further established a multi-lateral European Forum where all the stakeholders of the business sector, social actors, business networks, Civil Society, consumers and investors were able to exchange ideas about good practices and establish principles for codes of conduct. They also worked on identifying objective evaluation methods, validation tools and social labels to use to monitor business practices.


In spite of these developments there is very little mention of persons with disabilities in connection with international and European political actions to develop social responsibility. In the Green Paper mentioned above, companies are asked to manage their resources with responsible, and specifically apply non-discriminatory contracting practices to facilitate the entry into the labour market of “ethnic minorities, older workers, women, the long term unemployed, and less favoured persons”, without specific reference to people with disability, who often suffer from multiple situations of discrimination. 3.10. The new dimension of non-discrimination in employment As mentioned above, some countries (the United States, Canada, the United Kingdom, etc.) and some supra-national organisations (the European Union) have taken steps to promote employment for people with disability by establishing specific legislation to help combat discrimination. This recently developed approach goes further than “affirmative action”. It is based on the idea that on many occasions people with disability are unable to access jobs because of discrimination against them on the grounds of their disability. This is a violation of their rights to equal opportunities. Legislation has, therefore, been passed to give citizens with disability, their legal representatives and the organisations representing them legal and administrative tools to allow them to exercise their rights. With these new legal weapons, Public Administrations can no longer turn a blind eye to discrimination. These measures, which in essence turn non-discrimination into a universal right, are proving to be effective in countries where they have been implemented, although they alone will not be a major factor in getting people into the labour market. Non-discrimination, if it is to have its full effect, must be complemented with affirmative action, and articulated with material content to bring people with disability closer to the elusive world of employment.

3.11. Challenges and opportunities in employment The social and economic changes ushered in as the Information Society takes root promise to be as revolutionary as the steam engine or the Industrial Revolution were in their day. Structural changes always represent a special danger for vulnerable groups, whose livelihood is more easily eroded. However, this is not unavoidable. When problems are anticipated, the dangers that accompany them can be seen as challenges, and threats turned into opportunities. Automation has eliminated many tasks previously requiring intensive unskilled labour. It has also increased the demand for better trained workers. The impact of automation on the employment of people with disability depends, among other factors, on their level of qualification and their special needs resulting from their disability. For many unqualified workers with disability,


technological changes have had a negative impact on their employment opportunities as they used to have access to jobs that no longer exist or are slowly disappearing. In counter balance, the advent of the Information Society has brought with it myriad opportunities that may help create jobs for people with disability. First, the new tools being developed, the information and communications technologies, are simplifying the tasks involved in many traditional jobs, and this is creating jobs for people with disability. The Information Society is also generating new economic activities, and with them, new types of employment that will be suited to many people with different types of disability. Thus the consolidation of the Information Society will expand the range of work that people with disability are able to do. However, the benefits of these developments are not being shared equally among people with disability. This is partly because, in order to be able to benefit from these new employment opportunities, people must have a certain level of training and education and the financial means to access then. Furthermore, the very speed at which the new technologies are developing may constitute another obstacle. For example, the transformation brought on by the Internet from a text-based medium to a multimedia environment has meant that people with visual disabilities can access web pages by using a screen reader. However, people with post-locutive hearing disabilities, who have no difficulty dealing with text-based web pages, now experience difficulty when trying to access multimedia web pages that have not been adapted for this kind of disability. Unless the accessibility requirements of these people are taken into account, they will be locked out of the web, and will not be able to use the Internet at work. We are only just beginning to realise the importance of making the Internet accessible to all users and, currently, standards are being drawn up which will guarantee true universal usability. These standards will be extended to cover new developments and connection platforms, for example to access the web from a car using a telephone or a walkman. Another crucial factor will be guaranteeing the financial means for people with disability to gain access to new technologies. Today, many disabled people do not have the wherewithal to purchase the equipment necessary to connect to the “digital community”. The so-called "digital divide" may only be bridged if there is a genuine effort to ensure computer literacy among all citizens. It will also be necessary to make sure that all citizens can acquire the necessary computer equipment or, at least, have access to this equipment through, for example, setting up centres for computer networking. For this to become reality, the right telecommunications infrastructures will have to be put in place. The service sector constitutes another major source of employment opportunities for people with disability. Not only does this sector employ an increasing number of people in detriment to the industrial and agricultural sectors, a growing number of workers are involved in the production, handling


and transmission of information. The service sector requires good intellectual, rather than physical qualifications, and this may offer tremendous opportunities for people with physical or sensorial disabilities. Currently, many industrial processes are guided and controlled by computers, which means that people with disabilities may also work in these fields.
The labour situation of people with disability in Japan Although there are a number of measures in place in order to facilitate employment for people with disability, the real working opportunities for the majority of disabled people are still very limited. Japan has long enjoyed a much lower unemployment rate (between 1% and 2%) than other developed countries. However, as a result of the recent, prolonged recession and the restructuring of companies and industry in general which has lead to many changes in the traditional working practises, the unemployment rate increased to 4.5% at the end of the year 2000. This has had an adverse effect on the labour situation of the people with disability. The government must now actively create employment for the growing number of unemployed including those with disabilities. Technological innovations focusing on microelectronics has lead to an increase in industrial robotics and the automation of office work. These innovations have started to have a varying influence on the labour situation. A great deal of the machinery is now less accessible to people with disabilities, so they are increasingly susceptible to the negative impact of technological innovation. However technological development has also brought with it some advantages for the people with disability through the development of machinery and devices which provide possibilities of working in tasks that were previously closed to the people with disability. Amongst the future measures which may facilitate things for the people with disability we can include the development of professional rehabilitation programmes, including programmes for developing capacity in order to face the changes thrown up by technological advances. It is, furthermore, necessary to continue researching into the positive use of technology for the people with disability. The number of workers in the industrial sector is set to continue declining as a result of the prolonged recession, the restructuring of companies and the increase in labour costs. New opportunities for employment for the people with disability will have to be found in the tertiary sector. So we must make sure that they are provided with the necessary training in co-ordination with the educational institutions and the employers. There is a lot of room for improvement in the training opportunities for the people with disability and in the integration of this kind of training with standard training programmes. Ryosuke Matsui, Vice-president of R&D for the Asia Pacific region. Tokyo (Japan)

Moreover, other ways of generating employment must be pursued through the Social Economy, local initiatives, and new activities relating to needs emerging in our market that have yet to be covered. The development of the new information and communications technologies has made it possible to work out of our homes, a particular boon for people with reduced mobility. This new socalled “tele-working” is precisely one of the most promising options for people with disability, who are no longer constrained by the usual difficulties (mobility, transport, accessibility, etc.) that limit their working options. Tele-working can also be performed collectively in specially equipped areas (tele-working centres), and this opens a range of possibilities for organising co-operatives and non-profit organisations that can hire people with disability.


New sources of employment are being targeted in the field of recycling and other industries that protect the environment, in community services, tourism, Internet services and activities that cover specific niches, and these all offer a wealth of areas to develop employment for people with disability. 3.12. Tapping new opportunities Recent improvements in training and the development of these new veins of employment have had a positive impact on people with disability worldwide. In the last few decades we have learned to focus on the abilities and potential of people with disability, and this collective has found new opportunities while society in general has been enriched by their contributions. During this period, many widespread yet groundless beliefs about people with disability have been questioned, and this has helped overthrow barriers that traditionally have kept people with disability from being considered full-fledged members of society. We now understand that adequate training, the proper adaptation of the environment to accommodate a person’s disability and, above all, satisfactory social organisation based on integration and cooperation all lead to being able to take full advantage of the many benefits that people with disability can offer society. The advantages of fully tapping the potential of people with disability are considerable. From the axiological perspective, allowing each member of the human family to contribute to society helps us ascend the ladder of evolution to create the more advanced society we all aspire to. This is true from the productive point of view because the integration and human cooperation model allows greater independence and autonomy for people with disability and their families, through providing many disabled people with the opportunity of a dignified job in keeping with their limitations. The psychological and material benefits that this provides are clear, and this in turn benefits society as a whole. This conviction must act as the motor for change within our value system. Once we, as individuals and as members of society, can accept that the differences and limitations of people with disability do not in any way alter the essence of equality and dignity, nor diminish the rights of this collective, we will have made a quantum leap towards a way of life genuinely based on solidarity. 4. SOCIAL PROTECTION AND SOCIAL SERVICES The United Nations’ Declaration on the Rights of Disabled Persons (1975) states that people with disability have the same unalienable rights as everyone else, and that these include the right to security itself and to medical, psychological and functional treatment; the right to Social Security; the right to have their specific needs taken into account in economic and social plans


and the right to be informed of their rights. Laws have been passed that specifically protect the rights of people with disability, but coverage is not equal in all countries. It is precisely in the areas of medical attention and social security where protection is most variable. In many places of the world, people with certain types of disability do not receive the care they need. This is partially due to the fact that the disabled do not constitute a homogeneous group, but have diverse needs and require very diverse services. Our social protection systems are not necessarily equipped to deal with all situations. Furthermore, even when many disabled people share similar needs, their access to the services available is unequal, just as is the quality of the services themselves. Sadly, in too many cases, people with disability become the victims of discrimination in many societies, and the seriousness of this discrimination or inadequate attention to their needs is heightened in the less developed countries. Logically, each society has its own capacity to levy taxes to raise the funds needed to meet the community’s needs. In countries with the least capacity, it may simply be impossible to offer the population adequate social services. While this is the case of countries where large segments of the population live below the poverty line, it is also the case of countries where the lack of satisfactory social attention is due to other factors, generally to political policies. Some governments that have not been democratically elected relegate the question of attention to social groups at risk of exclusion to a secondary position. In other countries, social services may not be available because the laws providing them have not been put in place. Finally, sometimes care is inadequate because the procedures established to provide it do not take into account the real needs of the target group, or when policies are set and programmes designed without consulting the ultimate users. Often these policies ignore the fact that the needs of disabled people are not always the same, but in constant flux. When this happens, the target groups are just passive spectators to the process. The problem is compounded in the many countries where social services are provided in a very fragmented way, leading to inefficiency and inflexibility in the assignation of resources. For these reasons, some needs go unattended, while in other instances, there is insufficient funding to provide the programmes required. Another obstacle to the provision of care may be physical, such as geographical isolation: the social service centres may be located in areas of difficult access for many people, for example, those with physical disabilities, the elderly, etc. There are, therefore, many factors that obstruct the creation of an adequate network for social protection. We must find ways to overcome these barriers to guarantee satisfactory services, including access to quality medical attention, and to the general protection which should be guaranteed to all.



Social Security as an instrument of social cohesion

Social Security is an important instrument to promote social cohesion, as its aim is to protect all citizens throughout their lives from various contingencies such as illness, unemployment, maternity, family responsibilities, old age, disability, etc. However, in many countries, the coverage provided by the Social Security system is far from universal, and many collectives (those working in agricultural or the informal sectors, the self-employed, the unemployed...) receive no benefits. A plethora of insurance schemes, each one with its own financing and protection programme, vie for the citizens’ custom and this accentuates inequalities in coverage. Inequality in this field is not exclusive to underdeveloped or developing countries. Notorious imbalances in the organisation and delivery of these services have also been denounced in the most developed countries. In some of these countries, the Social Security system is structured in such a way that it can be really difficult for people with disability to earn enough money to pay their contributions and conserve their rights to a pension. A country’s pension system is essential to guarantee the welfare of its citizens with disability. However, many disabled people find that even after working and paying their contributions, they have greater difficulty than other workers in reaching the levels necessary to receive a pension. Certain legal requirements can act as obstacles if, for example, workers must demonstrate that the onset of the disability was prior to the moment when they started to pay their contributions, or if they have to prove that they are suffering from injuries that did not exist when they started working or that these injuries have worsened, etc. People with disability only ask to be treated like any other citizen, and this burden of proof is often unjustifiable and adds insurmountable obstacles to getting adequate coverage. The remedy for these instances is to enforce the general rule that applies to all workers, and establish that a worker is eligible for compensation the moment a disability is acquired. Why should people with disability be treated differently? Furthermore, the disabled are sometimes excluded from facilities that other workers enjoy in certain Social Security regimes. Early retirement is frequent among workers in certain sectors where the tasks to be carried out involve hardships. Miners, fishermen, airlines workers etc., all enjoy a significant reduction in the number of years they must work to be eligible for a pension. However, normally people with disability enjoy no such regime, even though working with their disability subjects them to hardships, or when their disability means they will be working fewer years. There is another problem in that a large segment of the disabled population never joins the work force because of the seriousness of their disability. When these people and their families are protected by Social Security, they usually receive a limited non-contributory pension that is lower and with poorer


coverage than contributory disability pensions covering similar cases. People in this situation should be entitled to access to the contributory system, independently of their working capacity or professional activity. In many cases legislation is too restrictive or only provides for incomplete coverage. People with disability may be barred from access to certain facilities that are only available when a certain level of disability is reached, even when the person has no access to remunerated work. In some cases people are afraid to accept part-time work because this may mean they will lose their allowance for disabled children or that their pension rights will be reduced. It would be much more realistic to introduce favourable mechanisms so that people could receive non-contributory benefits while at the same time undertake a limited form of remunerated work. 4.2. Social services, fundamental for the welfare of individuals and society

Social services help ensure the welfare of individual citizens, while they foment social integration and the development of society as a whole. Their success is proportional to the way they are deployed to meet the needs of individuals and recognised social groups. The concept behind our social services should be broad to include such basic needs as nutrition, safe drinking water, housing, public health, education, assistance in finding employment, transport, security and participation in the social and cultural life of the community. Special services must be devised to meet the needs of collectives with problems derived from age, or who are unable to work for various reasons. Social services must also protect the family in times of illness, maternity leave and other circumstances. Social services have been designed to perform many different functions: some palliate adverse circumstances, and others are meant to reverse them. Sometimes social services can act as compensation for differences between individuals and groups, while others aim to promote the development of the individual, the community and society at large. Naturally, national contexts and cultures differ but, generally speaking, when social services are inadequate that is because the problems they are meant to address surpass their scope, or because they do not meet the necessary quality standards. As states in the Report of the Seminar on the means to be guaranteed to population groups who are under-privileged in their access to social services (Bangkok, Thailand, 2nd to 6th November 1998), most social services systems are unsatisfactory for a vast proportion of the population. There are still millions of people who do not receive adequate social services if they receive any at all. Manifold factors are to blame. Many countries lack the necessary resources to provide adequate social services; in others, social programmes are not priorities when resources are distributed. In some instances, no mechanisms or processes are foreseen to articulate the sometimes divergent interests of different segments of the population. In other words, there are no


viable ways to allow the different social agents to collaborate amongst themselves. In other cases, to the deficiencies of the social services, we must add civil strife, financial crises and natural disasters, all of which undermine the system’s efficiency and effectiveness. Usually the victims of these situations are the population’s most vulnerable and underprivileged groups. People with disability still suffer notorious discrimination when it comes to satisfying their specific needs. Despite cultural nuances that accompany a society’s degree of social development, discrimination is blatant. Providing satisfactory Social Security coverage for all citizens requires social forecasting, and taking into consideration the diversity and plurality not just of the individual, but also of the circumstances each one of us may eventually be subject to. Sharing information and experiences and careful planning activities are steps that would help initiate much needed reform. 5. EXPECTATIONS FOR TECHNOLOGICAL CHANGE AND SCIENTIFIC AND MEDICAL ADVANCES 5.1. Innovation, design for all and user participation

The future of people with disability and their inclusion in a society without barriers and limitations will be greatly influenced by scientific and technological developments, and their application to everyday life. These, together with medical advances, will open new horizons that will have a major impact on the quality of life of people with disability and their families, and will be a driving force behind the inclusion of people with disability in labour, social and cultural life. Furthermore, people with disability are not the only ones who will benefit from these innovations: new technologies will have an important impact on the quality of life of the elderly and, most particularly, of people who acquire disabilities in old age. For these reasons, the now well-known Americans with Disabilities Act (ADA) calls for a budget to cover all processes of technological development and application. This law is paradigmatic in many aspects. Its intent is to act as a vehicle to translate the concept of accessibility into reality, by ensuring that technology is easy to use and understand from the perspectives of design and practical applications. The ADA establishes measures to ensure that technology truly contributes to improving the quality of life of the user by enhancing the man/machine interface, integrating tailor-made services and solutions and continually improving the control systems used. Tangible bi-products of the new technologies should be increased freedom of movement, transport and communications which will all, in turn, lead to fuller social, cultural and labour integration. Particular advances are being made in the field of domotics and this, in turn, is


enhancing the maintenance, ergonomic, modularity, and functionality features of assistive technology devices that can now be personalised and adapted to the circumstances and requirements of the user in his or her home. Other important changes are taking place in the fields of education, vocational training, preparation for employment and integration in the social environment. Real strides have been made in adapting environments to permit mobility, and in creating spaces where people with disability can participate in leisure and cultural activities. Technological advances are, further, being applied to streamline training processes, not only for people with disability, but for the professionals who will work with them in rehabilitation and social integration programmes. Regulating and standardising bodies are playing an active role in promoting universal access, and the Public Administration is beginning to take on board the idea that access must become the universally applied norm. However, these advances will only be successful if people with disability are allowed to participate closely in their design and implementation. The final objective must be to create a design for all, and this can only be achieved if the ultimate users participate in the design and development stages and are closely involved in the implementation and application of the results. It is only when this happens that the new technologies will be a decisive instrument at the service of promoting the inclusion of people with disability in society. It is only then that they will be able to open new markets. The steady implementation of new technologies in day-to-day affairs in the areas of labour, culture and leisure, and the fruits expected from the consolidation of the Information Society are pushing back the limits of our horizons. Thanks to on-going innovation, we will be able to create spaces where all people can participate in social and productive processes, and where everyone will have access to the new businesses and opportunities that will be created once the design for all concept takes hold. However, poised as we are at the start of the new century, we must be ever vigilant to make sure that innovation is always at the service of social integration, least we run the risk of creating new barriers that only lead to further exclusion. In developed societies, innovative technologies are being used not only to improve a country’s standards of welfare, but to increase its competitive edge as well, through new opportunities for greater social cohesion and integration. The new vistas offered by the interactive technologies that make it possible to transcend the usual boundaries of space and time, will open spaces where everyone will be able to participate in the social dialogue. This will allow us to listen to the opinions and expectations of all those who wish to make their voices heard in designing new, collective projects. Once again, we must make sure that the new technological applications make the Information Society a place for inclusion and participation. The dawning Interactive Society must be one where a person’s knowledge, rather than her technical or technological capacity, becomes the determining factor.


Knowledge, furthermore, resides exclusively in the individual and in her desire to make a daily contribution to the collective intelligence, which, in turn, will only reach its full potential when it is used to enhance the solidarity and welfare of all communities. Our collective welfare will depend, above all, on the development of our collective intelligence, without which the Information Society would lose much of its potential. Our capacity to pool this intelligence will depend on how well we are able to learn and teach, and how well we are able to improve our capacity for problem analysis, and deploy our creativity to devise effective and efficient solutions. This, in turn, will determine how well the users of the new networks are able to find new solutions to old problems. It will, above all, determine how well we are able to create new opportunities and open new horizons to satisfy personal interests. If our Information Society is to be characterised by social cohesion and not constitute yet another route to exclusion and second class citizenship, all public bodies and financial and social entities, and indeed society as a whole, must be committed to this goal. Legislation will have to be passed to make accessibility mandatory, and technical, industrial and social projects, both public and private, will have to be conducted to make sure that people with disability benefit from the concept of design for all. If this happens, technological advances and their applications, together with the information and communications technologies will generate new opportunities for integration, employment and training, and not erect yet another set of barriers to accentuate exclusion and discrimination. Training for all, and specifically for people with disability, in the use of the new technologies will be the cornerstone to achieving this aim. It will also be necessary to promote measures that enhance access to employment and equal opportunities for people with disability in the new professions that are being created through new social and business initiatives. The concept of design for all is key in this endeavour. Full support must, therefore, be given to initiatives directed at developing and implementing assistive technologies, and all other measures that facilitate accessibility, the first step to personal development and striving for new horizons. The private sector must begin to recognise people with disability and the elderly as comprising potential markets, with special needs that must be addressed. Not only do these demographic segments represent a growing part of the labour force, as people with disability gradually integrate into the working world, they will soon represent a strong consumer segment, with growing purchasing power. Forecasts estimate that by the year 2010, 25% of the money in circulation will be in the hands of the elderly, precisely a collective prone to late-onset disabilities. Experience shows an interesting benefit for businesses that incorporate the design for all concept in their products. Not only do they satisfy the demands


of a growing market segment, the public in general perceives these products as more user-friendly, higher quality and more exclusive than their conventional counterparts. It is, therefore, in the interest of businesses themselves to evaluate all their products and services from the perspective of accessibility to all users, and design out any form of discrimination or exclusion that may arise from their use. Other initiatives are being developed specifically to close the digital gap. An example is the Digital Opportunity initiative conducted in the final stages of the last American electoral campaign. Its aim was to make society aware that members with disability have greater difficulty in accessing the advantages and applications of the Interactive Technologies. The specific objectives of this campaign are to reduce these differences through positive action and coordination between public and private initiatives. Programmes spearheaded by private businesses, educational institutions and social action groups, supported in part with public funds, intend to go beyond the mere adaptation of tools and procedures, to make people with disability the true heirs of the advantages of digital technology. Assistive technologies are being developed, and the design for all concept has been incorporated to improve the functionality and quality of products and services, to ultimately allow equal access to all potential users. Not only will this help overcome technical and operational discrimination in the use of these products and services, it will serve to place on the market products and solutions that are more competitive, multifunctional and attractive to all consumers. As this first step is being concluded, great care must be taken to implement the good practices, standards and procedures necessary to eliminate any existing legal restrictions or previous regulations that affect the acquisition and provision of accessible services that might destroy the effects of design for all. Above all, we need to overcome the social limitations that conform to the maxim that uniformity is better than diversity, because these constitute one of the major barriers to the integration of people with disability. Strong foundations must be laid so the new technologies can truly promote the participation of people with disability in the development of collective intelligence. When we promote universal access, what we are really doing is making it possible to tap the contribution that each and every member of society has to offer, without excluding anyone. Achieving this goal will be a step towards learning to manage personal development throughout life, with the implications that this has in maintaining employment possibilities for everyone. Keeping up with the ever-evolving requirements of today’s workplace is such a challenge, that at a moment’s notice, anyone may find that they have a functional disability that impedes participation in active life. The sobering fact is that at some point in life many of us will have first hand experience of what it is like to be on the other side of the digital gap. For these reasons, programmes like those launched in the most advanced


countries are more than a simple gesture in favour of people with disability. They are initiatives to prevent any of us from falling victim to unfounded social prejudices that would prevent us all from contributing to society’s collective intelligence with our ideas and hard work. However, if we can ensure a network where everyone has access, these ideas will be renewed and enriched with a sense of solidarity and striving towards the common good. We must make this society without exclusion and discrimination possible, lest we condemn ourselves to an impoverished society which is an affront to the human dignity of those who are excluded. Everything must be done to prevent this kind of society from prospering. If it does, we will be closing the door to new applications and services conceived not just for a small sector of the market, but that have the quality and versatility to adapt to the needs of each client. There is a genuine gap in the market where competitive leaders can step in with services and products that go beyond the worn formulae of uniformity and exclusion. Diversity and inclusion represent the new frontiers which will be the differentiating mark of the most advanced products and services called to be the leaders in tomorrow’s market. In order to develop these principles, measures must be taken in various areas: the first is to update norms and standardisation processes to promote universal access; the next is to develop projects which will get as many people as possible into the labour market and allow them to fine-tuning their marketable skills throughout life; finally, every measure must be taken to promote and consolidate the design for all concept and the application of assistive technologies. Specifically, the list of priorities should include: a) Public Administrations should review their procurement practices and conditions to include the concept of universal access, so that our Governments can be the first to demand that all the goods and services they consume are universally accessible or can be adapted to make them so; With the collaboration of the organisations representing people with disability, we must write guidelines for the procurement of accessible materials for the work place and for educational purposes; with the implementation of these two first recommendations the standard can be set to promote good practices and in the public, private and nonprofit sectors; Catalogues of the specific needs for each type of disability must be compiled, updated and made available on line to serve as a reference for people designing goods and services; Fora must be organised to discuss ways to adapt technological solutions to the needs and demands of each type of disability. These fora should ultimately be made open to everyone by being posted on internet portals specialised in the field of disability in the public or private domains. They should include discussion about access to the





labour market, job-searching techniques for people with special needs, life-long learning through the use of virtual educational systems, etc.; e) The technologies being developed must allow our Governments to be fully accessible to people with disability when they go “on-line”; once again, these public initiatives can serve as a showcase of good practices to promote social inclusion with the full accessibility of all portals and web sites; to this end, the dissemination of initiatives like the WAI that focus on the development of web site accessibility will play a decisive role.

People with disability must take the initiate themselves to complement these proposals with specific activities if they are to be fully effective. Foremost is the need to: •compile a full compendium of the needs to be satisfied by the new information and communication technologies; •carry out surveys in as wide a range of collectives as possible to determine the degree of penetration of current innovative services and products; •estimate to what extent quality of life can be ameliorated with the implementation of innovations currently on the market or soon to be launched. What is more, the private firms and institutions working in the development of innovative technologies must begin to incorporate new criteria to evaluate their own activities, to make sure they are upholding the ideal of an Information Society for All. If the new Information Society is to be one of inclusion, very special attention must be paid to groups at risk of being left behind. Disability should be a priority, and all projects being designed should incorporate from the very beginning measures to ensure their full accessibility, and tools that will allow all citizens to use them fully. Projects should focus on helping people with disability access not only the labour market, but also the training necessary to become employed. These measures must adapt to the requirements of every worker. It is only if these factors are taken into account at the inception of a project that the Information Society will embrace all citizens, without creating new obstacles for integration into society and the workplace. Tools must be devised that will make it possible to evaluate all business initiatives from the following perspectives: a)Is it user-friendly for the immediate users who are disabled? b)Can these applications be combined with other initiatives designed to


promote the integration of people with disability? c)Does this initiative include procedures that will facilitate the incorporation of people with disability into the labour force and their participation in in-house training? d)Does this initiate incorporate good practices that ensure accessibility? In order to meet these criteria, every business will have to evaluate whether its products and services are accessible to all users, and whether they are free of any element that might discriminate against a disabled user. If they do not comply, complementary measures will have to be identified to guarantee accessibility. Companies must, furthermore, be asked to evaluate whether their new business initiatives enhance the access of people with disability to the workplace, and to specify the number of jobs for the disabled they plan to create at any given moment and in the future. Businesses must be required to evaluate whether they can implement new forms of employment, such as “tele-working” out of the home, that are appropriate ways for people with disability to join the work force. Ultimately, companies must evaluate whether their business plans include measures for all their employees, disabled and non-disabled alike, to participate in professional development programmes and update and upgrade their skills; if necessary, these plans should include formats specifically designed for people with disability, such as distance learning or other accessible tools. It is up to users with disability to inform the operators and manufacturers of goods and services of the features they require, and those they would reasonably expect to find in future developments. Simultaneously, it is paramount to make all the necessary changes in norms and standards to ensure total accessibility. We know only too well that unless there is a conscientious effort to bring on board and co-ordinate business and educational initiatives, the different social agents and players in Civil Society will all go their separates ways, and disabled users will never be able to participate actively in the market because of the limitations we are all too familiar with. All actions undertaken in this area must be adequately coordinated to include all the users with special needs who, along with the rest of us, hope to reap the fruits promised by the Learning Society. Every citizen must have the right to learn through cooperation and interaction with others. Every person must be given the chance to share experiences and discuss expectations; these are precisely the things that these new networks and applications are all about. If we proceed with care and guarantee accessibility, the new Knowledge Society will be one based on solidarity, and it will benefit from the contribution of each and every one of its members. Among the many challenges ahead is the need to adapt existing legislation to the new reality created by technological development, to ensure accessibility to


all people. Priority must be given to initiatives that incorporate the design for all concept and, here, the end users’ input must necessarily play an important role. This means that the technological solutions as yet to be defined must be based on the needs and expectations of their ultimate users, and these people must be given the wherewithal to make their voices heard. Today, little by little, obstacles to access are, nonetheless, being overcome, as manufacturers are following the lead of Administrations that have put accessibility on their agendas and have incorporated into their own good practices the exclusive purchase of equipment and services that are accessible. These good practices are laying the groundwork for protocols that look beyond “usability”, and try to elucidate the meaning of accessibility from a broader perspective. To gain insight into these issues, designers must consult people with disability and listen to their needs and expectations. However, we may fall short of this goal unless we proceed in an orderly fashion. We must implement procedures that will allow the users of the goods and services to express concerns about their quality and user-friendliness. Crucial to this part of the process is the dissemination of the information gathered from the users so that it can be applied to R&D. With this type of collaboration between designers, manufacturers and end-users, due attention can be paid to training the users properly and divulging existing good practices and positive results. All of these measures will contribute to promoting more in-depth knowledge about the information and communications technologies. The driving force behind these changes is the realisation that only user satisfaction leads to the success of a product or service; and, in the case of the user with disability, it is she who best understands her own needs and can give invaluable advice about the requirements of each product and service. Rehabilitation technology has been a pioneer in seeking the user’s collaboration and opinions, and international standards, such as the UN’s Standard Rules, or those derived from the Treaty of Amsterdam (EU), have been instrumental in facilitating constructive cooperation. Any project in this area must be built on the principles that put all the players are on equal footing. User organisations must take the lead; all participants must be remunerated equally; qualified personnel must have unrestricted access. Finally, from its inception, the process must be carefully planned with the involvement of people with disability. Each task involved must be clearly identified and described, with an indication of the people assigned to complete it who may be members of the project team, or outsourced. Once it is completed, a project must be evaluated, and checked against specific indicators to measure its success. While these pilot cooperation projects between suppliers and users are extremely important, nevertheless, user participation can only be effective if the associations that represent people with disability are firmly committed to the process. Their work with manufacturers and service providers should be articulated by agreements that set out each party’s role. Costs and


responsibilities can be shared within the framework of institutional platforms in charge of programming activities, training users and promoting R&D initiatives. With these measures, we can turn the concept of design for all into something that is more than a passing fad; we can help it take shape in plans, programmes and specific actions. By extrapolating achievements to other public and private initiatives that are, at this very moment, constructing the Interactive Age, we can make sure that we are building an environment that foments the participation of all individuals or groups, regardless of their abilities or disabilities. These efforts are helping to lay the foundation for an Interactive Society in which people with disability can be active participants and not merely passive objects of assistance and palliative measures that fail to empower the individual to act on his own. These ideas have already been put forward by the European Disability Forum (EDF) in its Manifesto on the Information Society and Disability, that examined the educational, employment, legislative and market aspects of disability, in connection with the issues of utility, accessibility and availability. In its review, the EDF warmly welcomes initiatives like e-Europe, while recalling that adequate funds need to be earmarked to promote the design for all concept, if the digital gap is to be stemmed and nobody left behind. Once the details of the European Action Plan became public, the EDF urged that the issue of disability be included in all programmes, not only those that deal specifically with learning and qualifications, in the assurance that improving the lot of people with disability will help bring about a society that is enriched by the diversity of its members. Recently, to push the issue of universal access forward in the Information Society, the EDF proposed specific actions for each of the partial initiatives included in e-Europe 2. The EDF’s intention is for people with disability themselves to be able to make positive contributions to policies and programmes developed to prevent exclusion. They want to prevent projects in course from establishing only partial solutions, and falling short of the demand for diversification, design for all and the full implementation of assistive technologies. Within this climate of change, we must also highlight initiatives from the USA and Canada in pursuit of new frontiers in an effort to close the digital gap separating people with disability when it comes to using the new technologies.


Medical advances and disability

As Dr. Gro Harlem Brundtland, Director General of the WHO, has pointed out “the health and wellbeing of people throughout the world depend, in a critical way, on the performance of the health systems attending them”. Precisely to measure the performance of health systems throughout the world, the World Health Organisation compiled a pioneer analysis in its Report on Health in the


World 2001. The following parameters were taken into consideration in drawing up the report: 1The overall health level of the population. 2Inequalities or imbalances within the population. 3The health system's capacity to respond. (The combination between the patient's satisfaction and the more or less correct functioning of the system). 4The distribution of the response capacity within the population. (How people in different economic levels perceive the healthcare they receive). 5The distribution of the financial costs of the health system within the population (in other words, who finances the system). With these indicators, the evaluation looks at different variables, such as each health system’s level of response to the requirements of people with different kinds of disabilities. The countries obtaining the best results are those whose systems have a greater capacity to address the healthcare needs of all their citizens in accordance with the principles of justice and equality. On the basis of these criteria, the report showed, for example, that France provides the best healthcare, followed by Italy, Oman, Austria and Japan. Likewise, in comparison with other countries, the health system of the USA spends the greatest proportion of the gross domestic product on health, but only comes in 37th out of 191 countries. However, the United Kingdom, which spends only 6% of its GDP on health services, comes in 18th and various small countries, such as San Marino, Andorra, Malta and Singapore are at the top of the list. This report puts the spotlight on the problems affecting health systems throughout the world and, highlights the most vulnerable groups: the elderly, people with disability and citizens with low incomes, etc. The report states that there are large variations in the deployment of health services, even among countries with similar levels of income and health costs. This means that health systems can be improved, and with them the health of the population. Dr. Christopher Murray states that, “Although there have been significant advances in recent decades, practically all countries fail to use their resources to the full. This leads to a large number of foreseeable deaths and disabilities, unnecessary suffering and the denial of the individual's basic health rights.” According to the report, the problems in the health systems are more serious for the poor who, furthermore, when their health fails incur financial difficulties


because they have no financial protection against illness. Countries should expand their health insurance systems to cover as great a number of the population as possible. In many countries, general advances in health benefit those who are already the healthiest. It is not enough to protect or improve the health of the population if inequalities are not reduced at the same time. The health system must prioritise actions which benefit the most vulnerable members of society because the objective of good health is twofold: to reach the highest possible average (the goodness of the system), and the least possible differences between individuals and groups (justice). When health systems are not working satisfactorily, that is, when medical services and advances are not used to improve the standard of health of all members of society without distinction and, above all, to support those most in need, these very advances may become a factor of discrimination. This situation only accentuates the existing gap between society’s different strata. It is only right that more attention be paid to those most in need, and that medicine and medical progress should be a means of preventing disability from being an obstacle to living a full life within society. 5.3. Medicine, society and disability

It goes without saying that medical advances have played an enormous role in the prevention and treatment of disabilities and in improving the quality of life of people with disability. Thanks to some of these advances, certain illnesses that have always led to disability no longer do so. For example, up until relatively recently, people affected by the AIDS virus were condemned to a progressive physical deterioration that, after a period of severe disability, eventually led to death. Today medical treatment allows many AIDS sufferers to lead a perfectly normal social and professional life. Medicine provides instrumental, orthopaedic, prosthetic, pharmacological and/or therapeutic care, which allows people with disabilities to overcome or, at least, compensate for many of their limitations and to lead a more or less independent and active life. However, the relationship between medical advances and disability is complex. Medical developments may also be behind a general rise in the incidence of disability because they are lengthening the overall life expectancy and improving the survival rate of people with serious disabilities. There is an additional fear that advances in certain areas of medicine may increase the rejection factor and discrimination towards people who, for one reason or another, suffer from certain kinds of disabilities. This is the case of medical advances related to the prenatal detection of possible malformations, congenital abnormalities or genetically determined diseases. This aspect is of vital importance. Despite the fact that recent surveys seem to suggest that there is a change afoot in the social perception of physical, mental or sensorial


disabilities, “disability” is still synonymous with “impediment”, “uselessness” and “incapacity” for leading a normal life. Society continues to automatically assume that people with disability are incapable of leading normal lives and continues to label them as “invalids”. This is one of the greatest obstacles to overcome. As all other social elements, science and technology are developed within a specific cultural, economic, ethical and moral framework. Scientific and technological results are used in a multitude of contexts that ultimately define the concept of health, illness or normality. They thus play a decisive role in how medical knowledge is used and applied, and set the agenda for the advances that are now taking place. For example, in the field of human genetics, solutions and adequate answers will be sought depending on how the problems are defined. It is, therefore, extremely important to avoid conceptual errors which will lead to inadequate solutions to the different problems. It is crucial for society not to make errors in its belief structure with regard to health, illness or disability. Having arrived at this point, we begin to grasp the magnitude of the problem. However, it is extremely difficult to apply any one set of guidelines to explain and define what disability actually is. Traditionally, disability has been defined according to two different models: the medical model and the social model. In the medical model, disability is seen as a problem or defect that in inherent in the person, caused by an illness or health problem. In this model, disability is perceived as a deviation from the norm. The objects of medicine with respect to disability are prevention and cure, or adaptation with aids, care and rehabilitation. From the political standpoint the object would be to reform health policies. As an illustration, many predictive tests or cures that are used in genetics centre exclusively on the individual and his/her presumed limitations. They obey medical assessment criteria alone and fail to take into account the effects and interrelationships between the individual’s social environment and his/her biological reality. Therefore they only offer medical solutions (prevention, cure and adaptation) without contemplating social solutions such as acceptance of differences, equal rights, etc. Although the scientist is not the only professional responsible for offering social solutions, no scientist, whose work has social consequences, can afford to ignore them. The social model of disability is an ideological model based on attitudes. In this model, disability does not only derive from a condition within the person, but from a whole series of factors that include the social environment. Consequently, any response to the problem requires social action. Society as a whole must undertake the environmental modifications necessary so that people with disability can fit in as full members. Social change is needed, and in political spheres the issue of disability must be seen as one of human rights, similar to those of gender equality and sexual choice. In many cases this will


mean that standards and regulations will have to be changed or overturned.

The most important scientific and political development with respect to progress for people with disability in the last three decades consists in the acceptance of a new model of disability. Currently the concept of disability is poly-dimensional and interactive, and disability cannot be reduced to purely a biomedical phenomenon but is understood as a result of a complex interaction between the person and his/her environment. This change in the conceptual paradigm, which is often called the “social model of disability”, has opened many doors to a wide range of scientific and political developments. When disability is understood not only as a question of morbidity that can be explained in medical terms, but also as a question of the general functioning of the human being, made up of physical, social and even attitudinal environments, the consequences for the future of people with disability are radically different. Jerome E. Bickenbach, Queen’s University. Kingston, Ontario, (Canada)

This conceptual problem exists because all biological reality can be formulated from both points of view: as a medical issue or as a social issue and a problem of human rights. For example, in the United Kingdom in the 19th Century, women were considered to be too dependent and emotionally fragile to have the right to vote, own property or hold custody over their own children medical model. Later, inequality between men and women was overruled, and equality between the sexes established - social model. Other groups such as homosexuals and bisexuals are facing the same kind of problems today. They are fighting to keep from being categorised under a medical model that prevents them from being considered “normal”; they want to be treated according to a social model that respects diversity and equal rights. People with disability are also trying to avoid being labelled as abnormal, and are fighting to be considered part of the diverse pool of humanity. There would be no social hostility towards people with disability if we were conscious of the fact that everybody is exposed to the possibility of a radical change in his/her relationship with the world, for example, as result of war, an accident or an illness. The problem is not so much in the disability itself, but in all that surrounds it, which is precisely what determines the incapacity of a person with disability to interact normally. In fact, it is the environment that determines the impediment. Since cities, streets, transport systems, work centres etc., are not conceived to include disabled citizens, then these people cannot travel or work even though they are perfectly capable of doing so. Disability should not be seen as a problem that only affects people with disability and their immediate surroundings. Disability concerns all of society, because the legislative measures and educational and general services that must be put in place in order to promote the total integration of people with disability concern us all.


In the field of disability, psychological studies have shown how a person’s environment can have a positive or negative impact on the personal and social development of the individual affected by disability. The environment thus has a direct impact on her capacity to work, for example. Disability is often accompanied by a sense of inferiority and social discrimination. What is really serious about this problem is that its origin is not within the individual himself but within the group, or the rest of society. Negative attitudes and prejudices manifest themselves in myriad ways and places, from the school to the workplace. Sometimes they are camouflaged in medical terminology, educational jargon, psychological tests or even an exaggerated paternalistic form of protection. In order to change the social image that people with disability command, and indeed, in order to help many people with disability change the image they have of themselves, it is important to value the person as an individual. It is necessary to adjust processes to the individual, respecting every person’s pace in productive or training activities, taking into account everybody’s particular needs. It is also important to insist that people with disability take an active role and participate in society by contributing with their individual abilities. As they do this, people with disability will become more aware of their own reality and understand, just like everybody else, how best to take advantage of their own capacities, and how best to compensate for their shortcomings. The challenge we face for the future is how to reflect back to people with disability the image that is rightly theirs. That is, that they are people who, with the right kind of support, can integrate fully into society according to their individual capacities and abilities. Society as a whole must undergo a deep transformation in this process. It is very likely that since birth, the child born with a disability will follow a different route from that of a child who is born without, and this will affect the way she develops abilities and intellectual and motor-sensorial skills. However, just as with any other person, the culmination of this person’s development and training will be influenced by many different factors: her psychosomatic constitution, her parents’ level of education, her social environment and other external factors that will either have a positive or negative impact on the individual. If this person’s circumstances favour the development of all of her potential capacities, at the end of the day, the individual will not only learn to be independent and to live within society, but she will also be capable of generating and transmitting other capacities. 5.4. Genetics and the discovery of the “Book of Life”

Scientific and medical expectations are increasing at a dizzying pace, especially since the human genome has been unravelled, and the scientific community


claimed to be in possession of the key to life which would make it possible to develop remedies and therapies for many of the ills suffered by humankind. The Human Genome Project heralded the arrival of a new era in genetic research. All necessary information for the creation of a human being is contained within the human genome, and the distortion of this genome is the cause of many dysfunctions and illnesses. For example, Down’s syndrome is caused by an alteration of the phenotype of the 21st chromosome. The first chapter of the “Book of Life” was opened when the complete sequence of the human genome was mapped, which is the stage we have reached so far. However, this is just the beginning of our quest. The most difficult stage will be to interpret the sequence, to know how to “read” the codes and determine how the genome works, how each element interrelates with others and how they interact with each other. While currently scientists are deciphered the complete genome of a growing number of organisms, including in the not too distant future that of man, research is moving in the direction of the branch of science that studies proteomics, or the set of proteins which are reflected in a genome. Many of the enigmas science faces are found in the structure and the function of proteins, and the interaction between these proteins and their modifications. In other words, before the scientific community can decipher the enormous amount of information uncovered after sequencing the human genome, it needs to understand, first of all, much more about proteins. This is extraordinarily complex since a proteoma is a highly dynamic element. Its components vary in each organism, tissue or cell as a consequence of changes in the environment, stress, the administration of drugs, the physiological state, etc. These changes can also be the result of the way the proteins interact in order to form macromolecular complexes. These variations considerably increase the number of proteins present at any given time, which, in turn, makes it much more difficult to identify complete maps of proteins. However, unravelling these mysteries will give us the key to determining the biological function that the proteins perform and their more than possible implication in the development of serious illnesses such as Alzheimer’s disease. Factors such as our current potential for computation and new bio-computing tools, together with an unprecedented refinement of analytical techniques, mean that, in the not too distant future, we will have at our disposal hitherto unimaginable possibilities. It is through studies in genetics that we will be able to eradicate illnesses. We will be able to detect an individual’s predisposition to certain diseases and tailor-make therapies and drugs without adverse reactions. It will be possible to ensure longevity and replicate organs. Prenatal diagnosis will allow us to unravel the genetic code at a very early stage of pregnancy, which may well mean that many of the cases in which an alteration is detected will be voluntarily terminated. Furthermore, genetic manipulation may allow us to reduce certain of the phenotypic characteristics associated with some genetic alterations. It will help us combat cancer, congenital malformations, muscular dystrophy, etc. We will also be able to act on toxic


agents, for example through the development of pharmacological therapies to prevent many alternations, or, at least, to improve the quality of life of people who suffer from illness or disability. These discoveries are not without risk, however, because once we gain the key to the system, just as we will be able to correct errors in the code that cause disease or alterations, we will also be able to alter the properties and potential performance of the human species, or to “select risks”. If there were to be free access to the genetic information of each individual, we could find ourselves faced with companies that use the data to select their employees. Or indeed, there might be parents who are tempted by the idea of correcting the genome of their children in order to prevent illnesses or improve their capacities. The problem of the control of genetic data is already with us. An example of this is the case of the companies that seek to patent certain genetic materials extracted from a person’s body or the manipulation of this genetic material. For all of these reasons, genetics must be a “therapy” that is accessible to everyone, and must not become a privilege open only to certain social groups. If genetic manipulation were to become widespread, it might accentuate social rejection and discrimination against people, who, because they did not use these procedures, suffered from some kind of “anomaly”. For example, imagine for a moment an incredible development in technical aids and rehabilitation technologies that could dramatically increase our eyesight. This would be equivalent to creating a new form of disability in those who had not decided to undergo such therapy. They would have inferior sight and would be considered “less able”. All of these scenarios, and many more that may arise, could incite great injustice and discrimination. It seems only a question of good sense for humankind to recognise that we all have different abilities and to protect this diversity, and fight against the already only too obvious tendency to overvalue “capability”. 5.5. Bio-ethics as a protection against dehumanisation

Bio-ethics—ethics applied to medical and biological advances — will play an essential role in our changing world in which medical advances, especially in the field of genetics, are gathering momentum. The issue is that, in the not too distant future, genetics will allow us to repair, or help repair, disabilities, diseases and defects as well as reduce suffering. However, who will decide which disabilities, illness or defect needs repairing? Who will decide what suffering is? Who will decide what the correct method of repair will be? How will all this affect our social structures? A sector of people with disability believe that their human rights are being seriously infringed by advances in biomedicine, and by the potential new forms


of discrimination that may be wielded in the name of scientific and technological progress. The way Genetics is used will determine whether these advances will serve not solely to treat illness and disability, but also to discriminate against all forms of life considered “not normal”. Therefore, it is important for limits to be placed that will guarantee that when biomedical developments are applied, the rights and dignity of all human beings are upheld. Instruments like the Council of Europe’s Convention on Human Rights and the Biomedicine Council of Europe will have a major role to play. Today it is often standard practice to terminate a pregnancy voluntarily if prenatal examinations and genetic testing detect characteristics considered “abnormal”, and therefore undesirable. This may be justifiably considered to be a new form of eugenics and a clear attack against human diversity. People with disability are often used as an example to justify the need to advance in the field of Genetics in order to eradicate their particular problems. For many, this simply reflects a discriminating medical attitude preventing people with disability from leading normal lives as active, productive and equal members of society. Can we afford to tolerate such a degree of dehumanisation that reduces the uniqueness and value of a human being to his or her genetic characteristics? Do human diversity, social relationships and mutual respect mean nothing to us? Bioethics must safeguard against Genetics and research focusing merely on eradicating disability, to orient them towards improving our information about disability, improving treatment of potentially disabling conditions and providing better support for people with disabilities. Bioethics must prevent future advances from becoming weapons for “genetic cleansing”, perhaps in the name of profitability and “social efficiency”, which would mean that far less funding would be channelled toward satisfying the needs of this collective. 5.6. Desirable objectives

If medical advances are to truly enhance the quality of life of people with disability and promote social inclusion, a series of objectives will have to be met. Many of these are transversal to all areas that seek to improve conditions for people with disability: Avoid disabling environments. The inability to interact with one’s environment is much more disabling than a disability in and of itself. The quality of life of people with disability is measured not only in economic terms and medical prognoses, but also in terms of social attitudes. Prevent disability. Some strategies must be broad sweeping to limit or eradicate wars, famine


and malnutrition. Others must be specifically tailored to prevent and combat diseases, guarantee road safety and safety at home and at work or de-activate the millions of anti-personal mines that continue to wreak suffering and death in many areas of the world. Our inability to prevent adverse events is, together with accidents and infections, one of the greatest causes of disability. Promote the participation of people with disability and their families in the design, organisation and assessment of the rehabilitation services. The rehabilitation itinerary should include such components as counselling and training in self-sufficiency, the provision of special implements and apparatus, specialised education and professional rehabilitation. Improve services and medical care for people with disability. According to recent reports from the World Health Organisation based on surveys carried out in member states and in conjunction with the main associations representing people with disability, the general state of medical care available to people with disability leaves a lot to be desired. Of the 104 countries surveyed, 95% claim to provide medical care for people with disability. However, 30% offer no form of rehabilitation, in 46 countries the primary healthcare services fail to address the needs of people with disability, and another 30% fail to provide specialised training for care providers who work with people with disability. With the exception of the nursing staff, specialists in all other areas (orthopaedic specialists, speech therapists, psychologists or paediatricians) are seriously understaffed, and are almost exclusively available only in urban areas. Thus, people with disability often have to travel long distances to reach centres with adequate human and material resources. Intensify research into the prevention and rehabilitation of disability and training for specialised human resources. Government collaboration must be articulated on all levels in order to support scientific and technological research aimed at the prevention and treatment of disabilities, the improvement of rehabilitation processes and the social integration of people with disability. Scientific research is crucial to uncover new resources for the prevention, detection, diagnosis and rehabilitation of many different kinds of disability. However, in many countries most rehabilitation technology is imported, and this increases the cost of services and makes it more difficult for people with disability to access them. Thus, it is essential for every country to train and support its own researchers in the field of rehabilitation and in clinical and technological areas, and sustain research oriented towards the prevention and the rehabilitation of disabilities. When assigning research funds, priority must be given to projects in the field


of disability. Advances in medical research have meant that we are now able to glimpse solutions to many problems that were once considered to be irreversible. Now, our knowledge in the fields of Cellular and Molecular Biology, the Human Genome, Genetic Therapy and Biotechnology must be put at the service of people with disability. The rehabilitation of disability often requires the use of prostheses, technical aids, implants, hearing and visual aids, etc. Research that improves the technology of these devices while reducing their costs must be pushed forward. Also foremost on the list of measures to meet these objectives is the training of medical and paramedical personnel in the area of rehabilitation services. Co-ordinate medical rehabilitation with social, educational, work and sports services The integration of people with disability can be forwarded through specific cooperation agreements between medical rehabilitation and educational, labour and sports services. All working-age people receiving medical rehabilitation should also be given assessment and vocational advice and training to prepare for a job. This can be facilitated through links between healthcare services and programmes in the areas of education and employment. Raise public awareness with information and orientation about disability and rehabilitation. It is crucial to disseminate information and orientation about disability and rehabilitation to the general public to encourage people to participate in activities relating to the prevention of disability and holistic rehabilitation. To this end, the following activities should be promoted: 1The use of the Internet by people with disability and their families and the public at large to disseminate information about situations and conditions that can lead to disability, their prevention and treatment and existing services, specialised staff, centres for the sale and hiring of devices and apparatus for rehabilitation, etc. 2The creation of special centres for people with disability to provide information and orientation directed to them, their families and the public at large about disability. 3The Administration of regular tests free of charge for the detection and rehabilitation of disabilities that can serve as vehicles to raise public awareness. These should include paediatric check-ups for children with disabilities, the detection of motor, auditory and visual disabilities, sports injuries that can lead to disability, etc. Of further interest would be a health education programme that involves the


public at large in activities oriented towards the primary prevention of conditions that generate disability. 6. PEOPLE WITH DISABILITY ALSO HAVE THE RIGHT TO ENJOY LEISURE AND CULTURAL ACTIVITIES 6.1. A society for all citizens

Leisure and culture, like employment, education, health and housing, are fundamental rights, inherent to all human beings. And just like the latter, they should be protected by the criteria of justice and equality for all. A person’s circumstances and her characteristics like race, religion or the presence of some kind of disability should in no way affect her enjoyment of these rights. However, in a world that is ever more global and competitive, where economic success is our most cherished value, and where both things and people are measured by their usefulness and productivity, it is increasingly difficult to achieve what Reinhard Mohn calls “The society of citizens”. That is, a society that is both supportive and protective, and that offers all its citizens the same opportunities for participation. History has shown time and time again that none of a country’s economic efforts or achievements can last unless they are balanced with the stability of its social structures.
“Everybody has the right to take part freely in the cultural life of a community and to enjoy the arts and participate in scientific progress and the resulting benefits.” Universal Declaration of Human Rights, adopted and proclaimed by General Assembly resolution 217 A (III) of 10 December 1948. Art. 27.1


Leisure and culture as determining factors of quality of life

Not only do all citizens have the fundamental and inherent right to take part in leisure activities and cultural life, these activities are important in determining quality of life, a concept measured by the degree of satisfaction of human needs, both material and immaterial. And for this reason these are matters of social justice and human rights. Quality of life not only means living comfortably; it is only possible in a society whose goals aspire to human development and the fulfilment of its people and communities. Leisure and culture are social phenomena that, for the individual citizen, translate into the benefits of personal enrichment and psychological balance, and thus enhance a society’s quality of life. They are also crucial on the social plane because participation in cultural, recreational and leisure activities is essential to the socialisation process. Leisure and cultural activities strengthen social cohesion and promote a sense of community. Because they broadly expand our options to occupy our ever-increasing leisure time, the culture and entertainment industries play a major role in our lives today. They are an economic force that generates myriad jobs and activities. But that is not all;


they play a key role in facilitating access to our cultural heritage. With its rigid timetables, traffic and traffic jams, innumerable obligations and duties to be fulfilled, day to day life often proves stressful...Leisure activities help us achieve a sense of satisfaction which is a clear manifestation of quality of life. Quality of life is fed by such important things as self-esteem, and the way we feel about ourselves, in turn, conditions what we do. When we are not socially integrated in all walks of life, we tend to undervalue our own selfworth, and take fewer social, academic and professional risks and avoid facing relationships with others. The time we spend away from our daily obligations improves the quality of our lives, basically because we use our personal independence and freedom of choice, to decide what we want to do, whom we want to do it with and when we want to do it. All of these parameters are often outside our control in other aspects of life. Activities such as visiting a museum, participating in a sports event or going to a play contribute to our sense of well-being. They reinforce our positive attitudes and relationships with others, because creativity and artistic expressions all form part of the experience. By satisfying different aspects of our human, personal, emotional and social potential, these activities help the individual feel fulfilled. These non-material aspects are essential to the quality of our lives. What is more, access to recreational and cultural activities is a natural route to social integration. For people with disability, participation in these activities sometimes requires an additional personal effort to overcome the obstacles created by the disability. However, and more importantly, facilitating the participation of people with disability by making all spaces accessible really is the task of all of society. Regulations and ethical standards need to be adopted to eliminate physical obstacles like architectural barriers, and problems in town planning, transport and communications. Fortunately, more and more countries are protecting the rights of people with disability through legislation that addresses these issues. However, we are still a long way from guaranteeing complete autonomy and integration. Under the heading of leisure and cultural activities, we see how once again accessibility to all environments and design for all are the prerequisites if all citizens are to be able to fully exercise their rights. If the special needs of people with disability are taken into account while new goods and services are being developed, products that everyone can use will be designed and produced. As a rule of thumb, when designing any space, it should be made to accommodate a wheelchair to cover the needs of any eventual user. Since a major obstacle for people with disability when it comes to exercising their right to leisure and cultural activities is the difficulty of gaining physical access to places, facilities and equipment, accessibility should be considered not only a right, but a prerequisite for inclusion. In our society only people who can move about freely and access all places, facilities and services are


genuinely integrated into social, economic, commercial, cultural and political life. Reality is very far from the ideal of full participation. Let us look at a few examples: Tourism Travelling is an enormously enriching experience. When we travel we meet other people in the context of different cultures and languages, and experience the pleasure of using different modes of transport, seeing new cities, experiencing nature, going on excursions, site seeing, etc. People with disability have great difficulty participating in these activities because of the physical obstacles that limit or impede their mobility. Transport facilities, hotels, cultural buildings, etc. are seldom designed with people with disability in mind. Games and sports Sport is usually associated with the body and physical health, but it is much more than that. It is a determining element in quality of life and social wellbeing. The importance of sports is measured not on the basis of the number of times one wins but on the enrichment to the person who takes part. We have known for a long time that physical and spiritual health are intimately linked, since as the saying goes, “Mens sana in corpore sano”. People take up a sport not just to improve their physical condition, but because it contributes to their personal and emotional balance as well. The person who practices a sport enjoys many benefits: 1When sports activities are practised from childhood they promote many positive forms of conduct such as respect for ones adversaries, solidarity, collaboration with others, learning how to lose and how to win, etc. These aspects are later applied in other day-to-day situations off the playing field. 2Sport is an important leveller of social imbalances and contributes to the development of equality among citizens. 3Team sports promote solidarity and are an important stimulus to human relationships and social integration. Many of the activities inherent to team sports reinforce inter-personal ties: wearing the same colours and performing similar actions, spending hours training and sharing dressing room banter, sharing aspirations and a commitment to the objectives of the team, working together towards a common goal, etc. Sport is an area where urgent action is needed to remove barriers to


participation: most sports facilities are inaccessible; few material resources are devoted to promoting sports among people with disability (often there are no special protection devices or orientation for people with special needs); there are very few professionals qualified to train and supervise people with disability, etc. Just as it would be impossible to build a sports facility without first drawing the plans, it should be inconceivable to do so without taking into account the eventual use of the installations. A typical breakdown would reserve facilities for school children for part of the day and space for the elderly or people with disability at other times. An example of the positive impact these measures can have on the quality of life of the entire population is the use made of the sports facilities and equipment built for the Olympic and Para-Olympic Games in Barcelona, in 1992. The needs of the whole population were incorporated into the plans and in the finished sports installations. Today, the public at large enjoys all these facilities. All the efforts to adapt the sports installations in Barcelona were continued in Atlanta and Sydney for the 1996 and 2000 Olympics. Since the public at large is unfamiliar with these issues, it is urgent to make society aware of these problems and understand what needs to be done for people with disability to effectively take part in recreational activities. As this is an issue that affects society as a whole, the mass media can have a huge impact on raising public awareness. The support of the television networks would be particularly useful because of the numbers of people they can reach if they broadcast sporting events for people with disability. When society becomes aware of what the problems are, we will be closer to reaching the goal of organising sporting activities where everyone, people with disability and the able-bodied alike, can all take part together in normal everyday activities, rather than in sporadic events. It is equally important to pass legislation to facilitate the integration of people with disability into standard sports activities. Restaurants, cinemas, theatres and cultural activities. These spaces are also often plagued by accessibility problems that impede or limit the participation of people with disability because their needs are poorly understood. Here, once again, measures must be adopted to permit people with disability to exercise their right to participate in these leisure and cultural activities. Physical remedies such as ramps, lifts, special toilet and parking facilities, wider doors, especially reserved areas, non-sliding surfaces, telephones at the right height for people in wheel chairs, etc. are all needed. There are lots of ways to make spaces accessible: signs can be adapted by using tactile surfaces, sound devices, clear maps, relief and Braille options all at the right height. For plays or movies, subtitles would help the hearing impaired follow the plot, while a soundtrack with a description of the action would fill in the gaps for the blind.


Information and Communication Technology New technologies need to be made accessible, and this is all the more true of technologies that help people with disability participate in cultural and leisure activities that would otherwise be closed to them. New technologies can also be instrumental in ensuring the safety of people with disability. To prevent what we have termed “technological disability”, full access to new information technologies is fundamental. This is not just a question of making sure that people with disability have access to the information available on the Internet, but also to mobile telephones, video games and consoles. The aim is to integrate accessibility into all of the products available on the general market, instead of generating an exclusive market just for people with disability. The Internet is an important tool to help promote access to culture and integration through participation. Accessible technology will allow everybody to consult the vast amounts of information circulating on the web with the added benefit that when people and communities inter-relate on the web, it is impossible to identify their abilities or disabilities. The Internet eliminates the effects of distance and encourages communication, making it the ideal means to reduce isolation and loneliness through the immediacy of e-mails and chat rooms. The Internet is the vehicle par excellence to disseminate information and culture. Access to the web makes it is now easier for people with disability and their families to keep abreast of medical and technological advances that can have a positive impact on their health and quality of life; and today, patients and doctors can use network technologies to communicate directly. Internet brings current affairs, magazines, newspapers and reports directly to us, and facilitates distance learning, takes us to virtual congresses, and so on. Provide more information All information published about cultural and recreational activities should include exact up-to-date details about accessibility, so that people with disability can make an informed choice about the most adequate accommodation or transport. This information must be readily available and, as far as possible, presented in different formats, (documents written in a larger font, cassettes, brochures written in simple terms....) and the content must be the same for all users. On the other side of the coin, it is also important for society to be better informed about disability. The still prevalent negative attitudes about disability that are basically imputable to ignorance need to be supplanted by positive ones that reflect reality better. The message to stress is that not only can they consume and enjoy cultural and recreational activities, people with disability can themselves also generate cultural products. The focus should be shifted away from the disability, because with today’s new technical and technological


solutions, disability should never be an obstacle to participation. A system for the assessment of accessibility All of the sectors of the economy that cater to the leisure industry, such as hotels, transport networks, travel agencies, theatres and cinemas, museums and other cultural institutions, exhibition halls and conference halls should be required to provide information about the accessibility of their facilities. This information will permit people with disability interested in visiting them to evaluate whether they are adapted to their needs. These assessments of accessibility should be carried out by qualified, independent experts to guarantee the objectivity of the evaluation. Society can no longer turn its back on the myriad obstacles that people with disability must overcome to gain access to cultural and leisure centres. The first, and perhaps most difficult, step in bringing down these barriers is to make these problems known beyond the circles of those immediately affected, and bring them to the attention of the general public. The leisure sector now constitutes an economic force that is a good barometer of a society’s development. The culture industry have become a strong productive sector that sets the bar for our quality of life, providing citizens with access to knowledge, innumerable cultural manifestations and all manner of entertainment. Leisure societies, the bi-products of consumer societies, now constitute a vital platform where the new knowledge- and learning-based societies are being configured. After all, these new social manifestations have sprung from the widespread consumption of cultural products through communications channels that reach well beyond the walls of our classical halls of knowledge. Thus leisure, a vehicle for creativity and innovation, is becoming a decisive factor for inclusion. Its various manifestations are a strong stimulus of our collective imagination, fed by the contributions of everyone who has access to the spaces where cultural and recreational activities take place. By aspiring to a society whose leisure activities are inclusive, we are defining new ways of integrating all citizens into collective life, and opening spaces where everyone can make their contributions to human creativity.


A form of political innovation, creation and experimentation must be kept up regardless of the political parties and their programmes. Nobody can deny that the day-to-day life of people has changed since the seventies and my own life is proof of this change. A change which is due, not to the political parties, but to a great number of other movements. These social movements have changed our mentality and attitudes as well as the mentality and attitudes of those people who are not related to the movements themselves. This is extremely positive and important. I insist, these changes are not due to outdated, traditional political organisations. Michel Foucault

We are fully aware that the title of this section reflects none other than wishful thinking. It, further, suggests a principle that is always dangerous to evoke when undertaking solvent and rigorous intellectual analysis and social thought. To speak of “the life of the citizen and active participation in political development” in a study on disability and its future in the world induces the error of supposing that people with disability throughout the world (which is not confined, as much as some people would like to believe, to the western nations and those that imitate their life style and social organisation) enjoy full citizenship and participate actively, when they wish to do so, in political development. The sad fact, borne out by numerous studies and statistics, is that, as a collective, and throughout the world, people with disability are not in a position to participate in the social spheres that surrounds them. They are virtually barred from access to even their most immediate milieus, not to speak of the widening circles of the municipal, regional, national and continental stages, because of the acute disadvantages with which they start. This fact must be faced four square if we wish to produce anything substantial in the field of disability and political participation. It is this fact that underpins the following reflection; it underpins it, yes, but it does not condition or limit it. Taking full measure of reality, weighing it and perceiving it in its genuine dimensions, however hard this may prove, and in the case of people with disability it is certainly arduous, is still the best way of bringing about change. It is the best way to anchor a process that will begin to turn the tables in an environment marked by dependency and where people with disability are acutely aware of their existential and vital limitations. However, this situation is no longer tolerable in our societies. The only way we can overturn negative realities and replace them with something more positive and appropriate for our times is if we have exact and as reliable as possible knowledge of what we wish to change. Otherwise, our acts can only be based on arbitrariness, good will and good intentions, in other words, all of those stones that pave the road to hell. 7.1. The life of the citizen

Whenever we approach the issue of disability we find a certain duality at its core. This duality may well be artificial, since it is impossible to take a cross-


section of a person, but the image will serve our purpose: The disabled person is, first and foremost, a person, a human being; a person who circumstantially, has a disability. In some, or indeed in many cases, society perceives the disability as a category, constituting the primary and central essence of the person. That this occurs, and it does far more often than it should, tells us that something is failing in our social system: Against all logic, this single facet, the feature that characterises this person’s disability is mistaken for the whole. It is as though the smaller concentric circle, circumscribed within the larger one somehow gobbled the larger circle up. This is monstrous, senseless logic, yes, but a social reality that is human, all too human. A report that focuses on disability is not the place to dissertate on the role of the citizen at large in political and social life. We shall leave that task to the sociologists and political analysts, who claim in resounding terms that it is the citizens and the organizations representing them that weave the fabric of social and political life. Suffice it to say that in the citizen participation model – where the protagonist is the nameless, “average” citizen –the sea of people with disability, along with all other social groups that are unique or singled-out, would simply flow into the vast ocean of society, becoming diluted with the rest of the citizenry. The resulting political mass would not be considered the sum or product of many subgroups, but as a whole, acquiring its own nature, identity and profile. Having established this scene, as we endeavour to fulfil the mandate of our report and examine disability today and possible scenarios for tomorrow, it is now necessary for us to take a step backwards and examine the political process at an earlier stage. For our current purposes, let us say that citizen participation in general in social and political life is our journey’s final destination. However, we must detain ourselves at an earlier stop and look closer at the way people with disability, as such, participate in the political process. People with disability enter this process with acute singularities, and this shapes the very way that they participate, giving rise to a particular “brand” of participation that is recognisable in social and political spheres. It goes without saying that the singular experience of people with disability in the political process is never exclusive of other forms of participation, which may and indeed do take place simultaneously. But it is nonetheless true that on many occasions the entry of people with disability into the process is unique, as it is based on the fact of their disability, and for this very reason this political involvement is of a very deep nature.
Graphically expressed, the disabled person must first ascend the rungs of the ladder to the plateau of full citizenship, and from there begin the climb to full participation and acceptance of social and political responsibility. Luis Cayo Pérez Bueno, Technical Director of the Spanish Committee of Representatives for the Disabled Persons (CERMI), España



The Disability Movement and associations representing people with disability

The Disability Movement itself often provides the forum where the person with disability encounters grassroots activism for the first time. Comprised by all manner of associations created to help the person with disability improve her quality of life by pooling resources, the Disability Movement represents a community of interests, and in the most broad sense, provides the primordial formula for forming groups where people draw together after each individual has experienced a similar process of consciousness raising: a)Self-recognition: The person with disability becomes aware of the personal circumstances that make her different from others and distinct from the community’s paradigm of “normal”. The person understands that she occupies a unique position within the social structure; b)The second stage is recognising oneself in others. In other words, becoming aware that the perception and subsequent interiorisation of the circumstances that make her different are not isolated, affecting her alone. She becomes aware that other members of the community she lives in experience similar situations. c)The previous stage is usually accompanied by a clear awareness that this situation, this circumstance that is so personal, yet also shared with others, places the person with disability on many occasions at an absolute disadvantage and is a determining factor which condemns her to exclusion, or at least places her at risk of exclusion. Put in economic terms alone, a disabled person's consumption of goods and services is greatly inferior to that of a “normal” person. Generally speaking, the person with disability contributes and receives less than any other individual within his or her community; d)The position of disadvantage, extreme disadvantage, that the disabled person faces, compounded by the treatment received from society, leads inevitably to the realisation that the disabled person is not only the one who is most interested in climbing out of this position of disadvantage, (this would seem obvious) but that she is also the only member of society who feels this position of disadvantage with enough intensity and urgency to make it essential to find a solution to the problem. It is people with disability themselves who must become the agents of the personal and social process of normalisation. They must accept to take control of their own destinies, once they have understood that whatever solutions there may be will never arise gratuitously, but will be forged as a response to their disabilities and through their organised actions;


e)The next step is the discovery of what we have called a community of interests. Once the person with disability has recognised her personal situation and recognised that it, or similar situations are shared by others, the circumstance of being disabled leads to the discovery of shared interests (that will be explored in another section). These shared interests then become the nexus of a union with other people and provide the occasion to pool resources and take concerted action to achieve common goals; f)To all of these elements we must add another of an eminently subjective character: the will of the individual. The will to form part of a group which offers a social organisation that becomes the vehicle through which to act with others who are in a similar situation to alter the negative aspect or, at least, those perceived as negative that limit or impede the full development of the possibilities of the disabled person. All of these elements, combined in different quantities and doses, come together to form the nucleus of an association or support group organised by and for people with disability. Each group is but a small particle, yet when they join forces, they forge a genuine Movement of people with disability, under the banner of the circumstance of a disability believed to be sufficiently relevant because of its effects on the social opportunities of each individual to constitute the base of an authentic social movement. It goes without saying that adopting, from among many others, the option of articulating a group around the circumstance of disability in no way excludes other options for political action. The innumerable formulae for political activism open to people with disability, just as to any other citizen, include such legitimate organisations as political parties, trade unions, volunteer and non-profit organisations, NGOs etc. While we are fully aware of the importance of these options, we believe their in-depth analysis is not germane to this study, whose objective is to explore the way people with disability organise political and social action through mechanisms that are genuinely built exclusively for, and run by themselves to improve the conditions of their lives. 7.3. The ways groups are articulated

After explaining what propels people with disability to seek out others and form associations, let us turn our attention to the ways in which these groups are articulated. An observation of the Disability Movement reveals that groups tend to organise around the following criteria: - the type of disability, or similarities in the original impairment, whether physical, mental, sensorial or of any other type; people with disability tend to form associations with others who have the same kind of disability, on the understanding that people who share a common social position and who suffer from similar problems with a common cause are best placed to propose and


search for common solutions; - location; on other occasions the criterion for association is extrinsic to the person with disability himself and the nexus for association is the person's geographical location. In these cases, people with disability join organisations in their neighbourhoods, cities, regions or provinces, with the conviction that they share similar problems and that solutions will be articulated through the Authorities with competences in their political jurisdictions; - another very common criterion is the objective or the end that is sought by the association; in these instances, objectives like integration into the labour market, the acquisition of technical aids and personal assistance services, the promotion of education, the extension of culture, etc. become the factors that draw people with disability to specific groups; - a further criterion for association is the social function of the members of the group; for example, university students with disabilities at a given institute of higher education may form an association because they have common needs as students and shared demands which are best attended to as a group; - other criteria for forming a group may be ideological principles or creeds; people with disability who share a set of political ideas or religious beliefs may organise groups. There are, hence, many organisations of people with disability in many different countries which are of a political or confessional nature; - another factor that may bring people with disability together is a shared interest in a leisure activity, such as a sport; - in other cases it is the relationship with the disabled person that forms the criterion for the association; the parents and relatives of minors with disability or of people with certain types of disabilities who lack the faculties to represent themselves may form groups to further the interests of their family members. These are some of the criteria and factors that lead people with disability and their families to form groups and associations. This list is by no means exhaustive, and the factors will rarely be present in a pure and exclusive state. On many occasions all of these elements coincide and become blurred, explaining the complexity of the associations of people with disability. Representing as it does so many different interests, the Disability Movement is far from monolithic; rather, it is a phenomenon that responds to diverse purposes, interests and situations, some of which may even be contradictory. 7.4. Political action in the Disability Movement

To understand how the Disability Movement came into being, we need to look further than the mere sum of all the different associations for people with


disability at any given time and in any given geographical unit1. Before these organisations can meld into a real Movement of people with disability, two factors must coincide: There must a certain unity of action with the aim of achieving specific objectives to satisfy, at least to some extent, the needs and demands of the disabled population; and these organisations must truly represent the disabled population as a whole. Before examining the type of unity and the actions required for the Movement to work effectively on behalf of an infinite number of subjects and agents, grouped in myriad associations, let us examine for a moment another issue of paramount importance: the question of representation. The Disability Movement is not the congregation of each and every disabled person living in a specific area, for example, a State. It is, rather, a representative segment of the whole which, in turn, is a minority within the larger population, who act, through the power vested in them, on behalf of the persons they represent to forward the interests of the group. When anyone acts on behalf of another, a series of requirements must be fulfilled in order for this representation to be valid, and to produce positive effects in pro of the persons represented. In this light, if the Disability Movement is constituted by the actions of an organised minority of a far larger group of people, the first condition required is for it to be truly and legitimately representative. This means that it should have the greatest possible support, not only in terms of numbers, but also in terms of the strength of its bonds with the segment of the population it represents. If the Movement's activities are to go beyond mere rhetoric devoid of content and of real effects, they must be backed by a well-articulated network at the grassroots level. The active participation of people with disability in creating and acting through the social organisations established to this end, and the sheer multiplicity of the groups acting on many different but complementary fronts, provide the pillars that sustain a solid, representative movement. However, the evidence shows that these two circumstances, active grassroots participations on many complementary fronts, are often not the case. In most countries, the Disability Movement is still fragile, precarious and unstable; the participation of people with disability themselves is minimal, the number of organisations limited, and there is indeed little awareness of the need of creating representative associations. The reasons for this situation (which we cannot look at here) are many and varied, but they are closely linked to the lower level of social and cultural development of people with disability in many countries throughout the world in comparison to the average citizen in the non-disabled population. This is one of the most serious deficiencies of the Disability Movement. We must deploy all the tools at our disposal on all fronts to redress this situation, and the first task is to stimulate awareness to change the culture of the disabled population itself. However, the question of representation does not stop here. It engenders procedural requirements that are of the utmost importance: the legitimacy of
1 For the purposes of this analysis we will generally use the Nation State as our reference, because it is the geo/political unit most widely used today.


the representatives who become the spokespeople of the movement that gives ab initio validity to their actions on behalf of the people they represent. The representatives of disabled people must be legitimate on two fronts. First, they must truly represent their constituents in the classical terms of democracy: the grassroots movement must be able to choose them from among diverse proposals and candidates, after examining opinions and offers, through direct election. Once elected, these representatives acquire a commitment to act in accordance with the promises tendered, under the understanding that their powers of representation can be revoked in the event that these are not upheld, or in the event of unjustified actions that are different from those proposed. The other aspect of legitimacy is not exclusive to the representatives of people with disability, although it especially concerns them: the representatives of the Movement should for the most part be people with disability, just as the Movement itself should be made up of people with disability. The process whereby people with disability themselves take control of their social and personal destinies should dispel antiquated notions that, often with all the best altruistic intentions possible, cast people with disability as inferior, weaker or limited beings compared to the rest of the population. Under this antiquated model, others decided things in their name that affected vital aspects that only the person with disability could legitimately decide for himself. Of course this second aspect of legitimacy does not imply that people with disability can be represented solely and exclusively by others with disability, disregarding the intervention and collaboration of non-disabled people. What it does mean is that we must re-focus the debate to re-establish the principle of the right of people with disability to develop and fulfil their own personalities, whatever their circumstances. In other words, we must reclaim for people with disability one of the universal human rights. 7.5. The content of representative political action

The political agenda of the Disability Movement is not something that is set in concrete, nor is it a mechanism centred only on itself. Rather, just as is true of any representative organisation, its justification resides in the results it can achieve to benefit the people it represents and on whose behalf it acts. The principle objectives of the associations in the Movement are to improve the living standards of people with disability, encourage the recognition and protection of their rights, promote equal opportunities, prevent all forms of discrimination and further integration into mainstream society, and these are the aims they are striving to achieve. All the political actions undertaken by the Movement on behalf of the people it represents are aimed at achieving the goals and aspirations expressed by people with disability. These actions are dictated by the following formal and material aspects: A) − Formal aspects The organised Disability Movement should endeavour to become the


universally accepted reference for the defense of people with disability; it should constitute the platform that represents them at the national level in each of our countries. It should also provide the structure to coordinate the sector internationally, representing its interests, needs and demands and gaining results on the worldwide level. − Its role as the platform that unifies all efforts must be effective. The Movement must, therefore, be recognised and perceived as the "spokesperson" of people with disability by all Public Authorities, the different social agents, the general public, people with disability themselves and Civil Society as a whole. As a result of the foregoing, the articulated Disability Movement should be recognised as the valid interlocutor between the collective it represents and the Public Authorities with political decision-making power over the questions that concern people with disability. All of the Disability Movement's political activities are directed towards improving living conditions for people with disability in a spirit of coresponsibility. Specifically the work of the Movement is organised as follows: Making proposals; the Disability Movement should make articulate proposals before the Authorities and social agents (including proposals that affect legislation) regarding the actions to be taken to satisfy the basic needs and concerns of people with disability. Society at large must be duly informed of these proposals. The Movement must not only put forward solutions, but must demand a rigorous diagnosis of the current situation, while formulating measures and actions that people with disability themselves perceive as the most suitable to achieve the goals established; Lobbying; these activities must be in the main directed towards the Public Authorities, although other groups with decisionmaking capacity that affects people with disability must also be lobbied, such trade unions, employers' organisations, corporations and institutions, public opinion leaders, etc., making known the proposals and opinions forwarded by the sector to ensure support, or at least to diminish opposition to measures formulated to defend and improve the lives of people with disability; Negotiation; the platforms representing people with disability must be able to negotiate with the Authorities and other entities with decision-making power with regard to the proposals for action that the Movement presents, or concerning any decision




that affects people with disability to defend the interests of the sector at all times; Prior consultation and active participation; the Disability sector must be consulted throughout the decision making process concerning issues that affect people with disability either directly or indirectly, and must participate actively at all times; this function is part of a broader concept, that affects not only people with disability, but extends to all social sectors and citizens to create a “civil dialogue”, which, due to its importance, we shall be looking at later; Defence and fight against discrimination; an organised Disability Movement should act as the watchdog that makes sure that legislation guaranteeing the rights and liberties of people with disability is upheld; it must be ever vigilant against de facto or even legal discrimination against people with disability. This fight against discrimination will, when necessary, involve promoting changes in our laws, and demanding legal protection in cases where this is the last resort to restore a person's rights or liberties, or overturn a situation of discrimination. Raising awareness in society; in a society galvanised by the mass media, it is crucial to create a visible space from which the mass media can report objectively, truthfully and respectfully on the realities of people with disability. This function will help strengthen the image of the disabled population, portraying it in a more positive light, and convey a message to the general public that will promote stronger ties between disability and public opinion. Joint and complementary actions; the disabled sector is not, by any means, the only segment of the population that is underprivileged and excluded; rather, it has many points in common with other social segments (women, immigrants, ethnic minorities, homosexuals, etc.). It should, therefore, broaden the scope of its actions to the social sector as a whole, deploying and sharing strategies and lines of action that reach beyond the field of disability to take advantage of economies of scale and benefit all less favoured groups.





Material aspects

Apart from the formal aspects that shape the strategies the Disability Movement should deploy to best represent its constituents, material aspects should be simultaneously identified to define the content of the action to be undertaken. These aspects are none other than the areas where the Movement should focus its activities to combat the social exclusion of people with


disability, and where it should concentrate its efforts to surmount the obstacles that bar them from taking part in ordinary social activities. An objective analysis of the social reality of people with disability in the majority of countries throughout the world reveals that certain areas are consistently sources of exclusion and impede the personal and social development of society's disabled members. These are areas where people with disability find fewer opportunities to exercise their rights and gain access to goods and services within the community. They include: − Employment; without employment and without adequate training for employment, it is impossible for people with disability to join the productive sector. While they remain outside productive circuits, people with disability will never gain the degree of independence they need to take charge of their own lives. Accessibility and barriers of all kinds; physical and mental barriers limit the scope of action of people with disability, compounding the initial, objective disadvantages that prevent them for participating fully in social life. Education; this is a particularly important factor for the personal development of people with disability. A person's education conditions her access to recognised means of integration, such as employment. Health, prevention and rehabilitation; personal development and full social participation are impossible as long as the basic healthcare needs of people with disability go unaddressed. Social protection and social benefits; these measures should complement the Disability Movement's own to promote the active incorporation of people with disability into the labour market. It is, furthermore, essential to provide protection for people who are unable to access or maintain employment. Attention to people with more severe disabilities; these are precisely society’s most vulnerable members, and their greater needs require more attention, not only from the political powers and society, but also and especially from the Disability Movement itself. The digital opportunity (new technologies and the new Information and Knowledge Societies); these are the factors that will determine the society of the future: under no circumstances must it exclude people with disability. Women with disability; this segment is not only quite numerous within the group of people with disabilities, it is also the sector which is subject to the most severe forms of discrimination, as disabled


women are often the victims of discrimination on the grounds of gender and disability. − 7.6. Access to culture and sports; these activities are a recognised and proven way of achieving social integration and personal enrichment. Parallel actions

Through the organisations they have created and that they run, people with disability have given rise of an articulated Movement entrusted by its constituents to promote, defend and encourage the development of their interests. However, the Disability sector does not work in a vacuum, but rather complements the activities of other organisations working on the same social issues, but from a broader social base. Its natural collaborators are the Government and Public Administrations, political parties, employers' organisations, the mass media, non-profit organisations, the church, and so on. By placing people with disability in prominent decision-making positions in these more "generic" organisations, the Disability Movement can further its aims; it can make sure that these groups are sensitive to the needs of the disabled sector, and that they do not adopt measure that are damaging to its interests. Our analysis has omitted examining the political and social activities of people with disability in areas where the fact of their disability has little or no bearing, believing that this type of political participation is beyond the scope of this Report. Instances of this form of political activism would not illustrate activities in the field of Disability, but would simply be examples of how citizens take part in the political process. The study of this phenomenon would fall to the social analysts and while it would, of course, provide much information of interest, it would be outside the thrust of a study of the Disability sector. 7.7. Financing representative political action

Most human activities cost money, and those undertaken in the political sphere are no exception. The work of the Disability sector must, therefore, be supported by adequate financial resources. While the work of volunteers who contribute manpower, materials and ideas is invaluable, it is rarely sufficient to cover all the Movement’s needs. Funds must also be found to coordinate all the Movement’s interventions, and organise and maintain institutions worthy of the name that play a vital role in pursuing its objectives. Were the contributions of volunteers the only resources to be tapped, the stability and strength of the Movement would be in jeopardy. The Disability sector must, therefore, explore alternative sources of financing. Current income comes from membership fees collected by the associations that compose the Movement, and financial contributions from families or individuals. However, in the light of the proverbial economic hardships that people with disability often experience, these sources cannot in and of


themselves finance all of the Movement’s activities. Public funds from local, regional, national and supranational authorities are also often available, with the drawback, nonetheless, that accepting financing from these entities can compromise the Movement's independence and create relations that are less than healthy. Public financing, furthermore, is seldom sufficient to cover the Movement's needs. In some places, the Movement is self-financing by providing competitive goods and services to the market. Groups offer assessment services, compile reports, manage social service programmes on behalf of public and private entities and provide specific services to people with disability. This model has proven successful as it diversifies sources of financing, and incorporates professional-level management skills. However, when organisations become involved in market activities, they run the risk of contaminating and diluting the essence of the Movement and may lose sight of the primordial objective of representing people with disability. Furthermore, if this model becomes wider spread, it introduces the danger of the Movement's turning into yet another provider of products and services that will eventually and inevitably apply only market criteria to its activities. Another source of financing that has enjoyed a certain amount of success in various parts of the world is obtaining resources via donations or aid from corporations, foundations and non-governmental organisation (the latter having made inroads in cooperation between rich and poor countries). Public fund raising campaigns and other activities sponsored by specific associations for people with disability have also generated income for the Movement. As can be seen, the issue of how to finance the Disability Movement is one that has yet to be resolved. As the different options all present advantages and drawbacks, perhaps the best alternative is to conjugate them in an intelligent way, depending on the circumstances of each case, adapting them to bring out the best, and minimise the risks of every situation. 7.8. Social responsibility

Apart from the volunteer nature and the humanitarian and altruistic spirit that generally imbue movements like the one in favour of people with disability, there is an another essential ingredient that should inform the activities of any social movement: social responsibility. Social responsibility must be the backbone of all activities undertaken in the interests of an underprivileged group, and most specifically it must be patent in the behaviour of any movement’s leaders. The leaders of the Disability Movement have a direct responsibility towards the people with disability, the rank and file that they represent. These people provide the very raison d'être of the Movement, and they must have guarantees of democratic representation, electing their leaders through due participation. Once elected, the Movement's leaders are accountable for their actions, and must be open to critical analysis; they are responsible for administering economic resources efficiently and efficaciously, and are


answerable for the decisions that they take. They also have a responsibility towards financial donors, both public and private, who should require guarantees that the funds they provide are correctly applied to obtain the stated aims of the organisations comprising the Movement. While the activities of the Disability Movement are mainly confined to Civil Society and the volunteer sector, it is far from exempt from the scrutiny of mechanisms that monitor its activities, actions and stewardship of resources. Transparency and accountability are much more than moral and legal obligations. They are values that reside at the very heart of the Disability Movement itself.


The mounting social inequalities, dissatisfaction and human unease that signal our times contrast sharply with the economic growth and technological development attained at the brink of the XXI century. For too many people, the era of globalisation and of the New Economy is lapsing into the era of poverty and social exclusion. Ways must be found to foment values and alternative behaviour patterns that foster human development and allow all human beings in the four corners of the Earth, to step forward and claim their rights, liberties, well-being and human dignity. Mainstreaming disability can provide a new paradigm for the acceptance of human differences. It can become a model of how to use the human resources, knowledge, will, hopes and desires of each and every member of society. This chapter explores the contributions that people with disability can make to society as a whole. It examines how their experiences can serve to help develop values like solidarity, cooperation and equality that can inspire a transforming humanism that nourishes the development of Humankind. It outlines the contours of a new society where economic competitiveness goes hand in hand with social cohesion.

1. THE NEED TO RECREATE VALUES IN A CIVILISATION AT A CROSSROADS While in recent years material wealth and technical progress have surpassed all expectations in rich and developed countries, in developing countries the number of people without homes, jobs, education, medicine or sufficient incomes to be able to lead a dignified life has also reached unprecedented levels. More people than ever live below the poverty threshold and the gap between rich and poor countries gets wider with each passing year. The chasm separating the North from the South is so deep today that it is difficult to imagine it's ever being bridged. In today’s world, not even the rich countries are able to guarantee a satisfactory level of human development for all their inhabitants, and entire sectors of society remain on the fringe of the illusion of prosperity. In the United States, the world's economic leader, 16% of the population (one person out of every six) are the victims of social exclusion. In the United Kingdom, a quarter of all children live below the poverty line.


This social breach is so profound that it has changed the concept of social exclusion itself. The original term of social exclusion referred to those segments of society which were displaced by the system and left at the mercy of charity organisations. Nowadays, however, the concept of exclusion is much broader; it no longer alludes merely to these minority segments, but also refers to a true fracture that has rent the very heart of society, and has shaken it to its core. It is a like a false note struck in the concert of human concord. It does not seem to be by chance that the “digital breach”, another false note in society, is being superimposed on the concept of social exclusion. According to the UNESCO's World Report on Communication, "history shows that the countries which do not take advantage of the new information, computer and telecommunications technologies will inevitably be slowed down in their development ". The Internet was one of the great hopes for evening out the imbalances between the rich and the poor in the world. However, various reports produced by qualified bodies have confirmed that, far from laying bridges to include the excluded, the advent of the Internet has accentuated the inequalities: The richest 20% of the world’s population command 93% of Internet access, whereas the poor scarcely muster 0.2% percent of the lines. At the same time, the unrelenting competition businesses are facing today is, to say the least, disconcerting. The idea that the new economy is a paradise of highly qualified employment paying high salaries is far from the truth. Almost 40% of the employment that will be generated between now and the year 2006 will pay less than 10 dollars an hour and will require relatively low educational qualifications. According to Robinson, all big waves of innovation are immediately followed by the creation of new, competitive companies avid to prosper in their wake. The result is a dynamic model but one that is traumatising to human beings. Innovation under these conditions destabilises the way things are done, and the participants in this new economy live under chronic stress. The income derived from innovation scarcely stretches to recover research costs before competitors drive prices down with alarming speed. This cycle is even shorter in the Information Economy. Today, even the most quality workers fear for their jobs, and margins are being threatened from all sides. Companies have begun to opt for a temporary workforce that is employed part time, and often resort to outsourcing to meet their human resources needs. (In Silicon Valley 42% of all jobs are precarious). The United Nations believes that excessive competitiveness, the fruit of liberalisation and deregulation, is one of the causes of the poverty that plagues so many societies today, because it often forces the poorest and weakest companies to close their doors. The American sociologist James Petras has denounced that during the Brazilian economic crisis, European and North American multi-national companies snapped up indebted companies for next to nothing, made many workers redundant and reduced the salaries of those who remained. The extreme vulnerability of workers, Civil Society and small and


medium-sized enterprises is such that a regulating mechanism must be put in place to keep multi-national companies from perpetrating these actions. Massive redundancies in order to put companies back on their feet, aggressive competitiveness and the obsession with growth at all costs are perverse trends that perpetuate the concentration of wealth and the globalisation of poverty. In this type of environment, it is people with disability and other groups at risk of social exclusion who are the first to suffer directly when their defences are eroded, and unfortunately, this is only the preamble to other situations where social discrimination becomes reality. The rise in inequality, dissatisfaction and poverty are realities that are in vivid contrast to the levels of economic growth and technological development reached at the beginning of this 21st Century. The era of globalisation and the new economy have also ushered in the era of social exclusion, with an increase in poverty that has trapped many people without hope of escaping the cycle. We live in a dual world where a group of privileged people enjoy previously unheard of wealth and material wellbeing, side by side with an immense mass of people who are poor, unemployed and the victims of discrimination.

We are not referring to old formulas related more or less openly with charity because we are speaking about rights, no more and no less: the right to a dignified life, the right to equality which will disprove the old and antiquated maxim of Jefferson: “all men are born equal, and that’s the last time they are”. We are, rather, more in line with John Stuart Mill when he states that “there is no better proof of the progress of a civilisation than that of the progress of cooperation ". Unfortunately, this cooperation in the field of disabilities is far from being one of the parameters of globalisation. In fact, it is far from being considered at all: it is limited to very specific circumstances in limited geographical areas. Globalisation, as we understand it (a single world, a single, free, egalitarian and supportive population), does not and cannot consist of the pure and simple imposition of certain global economic and social conditions, laid down by some unknown force, which we have to accept passively. As we understand it, globalisation, if it is to be something worthy of esteem and a factor for mobilisation and the positive adhesion of wills, means that everything must concern and be a question for everyone, it must be something in which we all take part. In Europe, we have tried – and I sincerely believe we are being successful – to ensure that disability, a personal circumstance but with undeniable social effects, which affects 40 million Europeans, stops being invisible and becomes patent, manifest, because if it is not so, we will continue to be ignored as a group and as individuals, for diagnoses as well as for solutions. José María Arroyo Zarzosa, Chairman of the Board of Directors of the Organización Nacional de Ciegos de España (ONCE) at the time the Report was written, and currently Chairman of the Once's Business Corporation.


We cannot accept that there are no alternatives to this situation, that inequality and injustice are simply inevitable. At this crossroads in the history of humankind, we must look for different directions and encourage behaviour patterns and values that enable us to create alternatives that permit human development. We must ring in an era of human rights, liberties, wellbeing and dignity for all people in all the corners of the world. If we really aspire to reaching the plane of satisfaction, security and real freedom for all the citizens of the world, we must modify the logic of the three factors that govern the way we work today, and indeed how we conduct all human activity: the logic of production and the material use of resources, and strive to make them reasonable and sustainable; the logic of macro-economic regulation, so that resources can be shared equally; and the logic of the values and beliefs that sustain our collective life, so that we can free ourselves of the general sense of frustration that permeates our lives when material gain is the only incentive for humankind. To sum up, we need to rethink the model of development we are aiming for. 1.1. A solid social environment

While public and private prosperity are two of the drivers of social progress, they do not automatically imply that a higher level of social satisfaction is produced in times of economic growth. In fact, apparently quite the opposite occurs. Putnam and Williamson have pointed out that in the United States, favourable economic development is accompanied by a latent discontent in public opinion. Surveys that gauge happiness show that figures today are lower than those corresponding to one generation ago, when income per capita was significantly lower, revealing that more people than ever are discontent with the way we live. We seem to be more and more convinced that our moral climate is crumbling, and the number of clinical depressions has multiplied. The new economy has not been able to satisfy the hopes it raised but, on the contrary, the population is under greater stress, since in order to earn more, we have to work more and we have less time for family and social relationships. All of these factors are crucial if we are to understand the reason behind this discontent in a period of economic bonanza. Individual happiness has more to do with the strength of our social ties than with any other factor, including income. Prosperity and money alone do not guarantee the strength of family relationships and friendships. They do not give us happiness. From a collective point of view, these changes represent a decrease in what has been called “social capital”. Social capital is made up of the networks linking people within society and of the rules of reciprocity and trust that these networks create. In other words, social capital refers to the level at which people relate to each other. Social capital affects society in many ways, from how political institutions are run, to the life expectancy of a country's population. A decline in social capital spells a threat for democracy — and for


the quality of life of the people — and it is as serious as a sharp reduction in physical or financial capital. We are finding out that macro-economic stability, growth in production and commerce and technological development are not sufficient to reduce poverty and inequality. A solid social environment is also required. We are learning that better quality of life will not necessarily accompany a higher income, but that it depends on increased civil liberties and political freedom, more security and participation in public life, more education, food, and health, a better protected environment and a State apparatus that really works. Human development implies strengthening the capacities and liberties of all members of the community, and before this can happen the social mechanisms that guarantee that all citizens can exercise their rights and liberties must be put in place. Another lesson we need to assimilate is that far from constituting brakes to development, social equality and justice promote economic efficiency and the expansion of trade and prosperity in the medium and long terms. So, if inequalities are to be reduced, and all citizens given access to wealth, we must implement fair redistribution measures with policies that stimulate the participation of all in social and economic life. On an international level, a stable environment is sine qua none before economies can flourish, and stability can only be achieved if the right regulatory frameworks are in place to limit speculation and control the financial volatility associated with globalisation. If we really seek to globalise prosperity, industrialised nations will have to liberalise trade, but they will also have to accompany these measures with strong social and environmental clauses. Only in this way will we manage to give globalisation a human face and make it compatible with a higher conception of democracy and human dignity. 1.2. A transforming humanism that fosters the development of Humankind

In counterbalance to individualism, competitiveness and the accumulation of riches, we should strive to promote values such as solidarity, cooperation and equality, as these make up a form of humanism that is capable of transforming human development. Solidarity is not simply a feeling of compassion or mercy when we contemplate suffering that affects others near us or far away. It is a firm and constant commitment to the common good, to the wellbeing of each and every one of our fellow citizens. Solidarity is much more than a feeling: it is the intelligent desire and capacity to work in an organised way in favour of the common good; it is aimed at bringing about lasting social change that will provide the solid rock on which to build a world where every person can take charge of his own life within his community. Solidarity will help us build a world in which everyone will be able to enjoy genuine quality of life based on human values and support for each other.


Today, thousands of people show their solidarity by sharing in common projects where they work hand in hand with others, taking on their needs as their own. These people understand that it is by joining forces that we can achieve human development that is based on dignity and that never compromises freedom. These are the values that will help us shape a better society, from the private to the collective sphere. The private citizen who holds these values and puts them into practice elicits reciprocal responses in her environment which, in turn, generate positive attitudes and feelings, such as greater self-respect and satisfaction. Likewise, the society or group that professes and applies these values improves its cohesion and efficiency and is able to improve the quality of life of each of its members. The notion of solidarity brings with it the idea of closing ranks with others to further a common cause. Solidarity requires empathy, the ability to put oneself in the shoes of another, and from it stems the determination to work together to nurture a social environment where mutual and collective development are possible. But if our goal is to build an environment with real quality of life, where we support one another, then solidarity must reach beyond those closest to us and our peers. Authentic solidarity permits us to understand people outside our immediate circle who share our concerns and problems, to embrace all members of society. It is true that people with disability need to share a common vision and we strive to help each other achieve our goals; however, true solidarity makes us "reach out", beyond seeking satisfaction for ourselves or our immediate group, to endeavour to multiply the possibilities in life for all people, now and in the future, because the goal of true solidarity is not to have, but to share. Cooperation strengthens cohesion within society. A significant and current example of international cooperation on a very relevant front is the fight the non-governmental organisations are waging in Africa to compel the international community, and particularly pharmaceutical laboratories, to produce medicines to treat AIDS at a significantly lower cost, and eliminate all the red tape and other obstacles to treatment. A Civil Society capable of bringing its citizens together around the values it represents generates a feeling of self-esteem from the mere fact of belonging to it. 1.3. The value of diversity

Solidarity is more than a safeguard of the dignity and rights of the individual; it stems from the conviction that human diversity is one of society’s strengths. In a society where solidarity reigns, providing a haven for diversity is not only the imperative of justice and equality, it is understood as something that is extraordinarily positive and productive. Respect for diversity is a prerequisite to real equality, and social inequalities recede as society accepts that all citizens have the right to be different and begins to value diversity. A civilised society should feel uncomfortable with social and economic inequalities, which originate not so much from differences


between individuals, but from the way society is organised. Policies aimed at reducing instances of inequality must be put into place to tear down the barriers that prevent everybody from exercising their rights and actively taking part. Traditional economic and social processes have contributed to making diversity socially invisible, and for a long time society has seen and understood little about people with disability. Prejudices have occupied the place of knowledge, and as a result, the problems facing people with disability have gone unattended, with the belief that they belong to the individual realm and have no place on the public stage. We now know that if these problems are to be solved, they must be faced collectively. An example of this necessary process of solidarity is the case of domestic violence. Domestic violence is no longer considered something exclusive to the private sphere where it was hidden and shielded from public scrutiny, to be accepted as a problem that affects us all, and that must be dealt with from many different angles by society as a whole. Placing value on diversity in the context of equality and participation, reciprocal understanding of each other's needs and solidarity when satisfying these needs all strengthen the foundation we need to build a “society for all”. 2. THE ADVANTAGES OF SOCIAL COOPERATION More than two thirds of humanity do not benefit from the new model of economic growth. Ecological imbalances have become more acute and the statistics that quantify the differences between the rich and the poor should put us all to shame. The laws of the market cannot distinguish right from wrong, but are biased towards the powerful to the exclusion of everyone else. Society appears to be anaesthetised in the face of all these problems, the signs of the times in which we live.
The constant decrease in the number of people who vote in elections in many democracies is interpreted by sociologists as a growing divorce between society and politics. The general public is getting less and less involved not only in politics, but also in other kinds of civic activities. In the United States, there has been a decrease in the number of meetings of associations (the average was one a month in 1976 as opposed to 5 a year in 1996) and the implication of the general public in community activities (7% of Americans dedicated part of their time to community organisations in 1965, whereas in 1996 this proportion had dropped to 3%). There has also been a drop in attendance at religious ceremonies. People meet each other less and receive fewer visitors, (a decrease of around 45% since the sixties) and make fewer visits on their friends. Family life has also been affected (Americans have 30% fewer family dinners than they did in the seventies and the probability of parents chatting with their children or watching television together has been reduced by one third). Extract by Robert D. Putnam and Thad Williamson. Why aren’t the Americans happy? El País, 7th March 2001, Madrid (Spain)

Federico Mayor Zaragoza, former director of UNESCO, has stated irrevocably that we must fight the “pessimists” because they have always facilitated oppression, injustice and barbarism, and has challenged the “silent


intellectuals” to face up to social inequalities. Gunter Grass sustains that "we can be defeated in our commitment as a result of indifference". Along the same lines, Ignacio Ramonet, director of Le Monde Diplomatique, has said that there is a general feeling among European intellectuals and politicians that is known as the “TINA syndrome” (There Is No Alternative). Turning these feelings of impotence around is the first challenge we face. That is where the transformation will begin: when Civil Society believes in its capacity to stem these growing inequalities.
"I am convinced that political solutions can also be reached through a humanist approach. Part of the tragedy of the world is that politics is disconnected from humanism. The question is, why do we not return to base, to humanist priorities?" Ruud Lubbers, ex Prime Minister of Holland, maximum figure of the United Nations High Commission for Refugees (ACNUR). El País Semanal, 27th May 2001, Madrid (Spain)

The second challenge is cooperation. It is a question of changing the “I can’t do it” spirit to “we can”. In this sense, a movement has been palpable for some time that reaches beyond specific initiatives and isolated problems or groups. It is a movement fighting for the inclusion of all those who are waiting for their human rights to be recognised (women, people with disability, immigrants and displaced persons...), side by side with people who are searching for a fair, sustainable development in a healthy environment. This alliance of heterogeneous groups is the example of a society that is beginning to defend diversity as part of the wealth of social capital. The ultimate aim of this movement is to close the gap of exclusion to build a social environment where there is a place for each and every one of us. Combating the risk of exclusion is one of the major challenges we face. Each one of us lives with a degree of risk or social vulnerability, as anyone of us may be affected by an undesired event that erodes our socio-economic position and our ability to participate fully in society and influence social exchanges. How vulnerable each of us is will depend on individual factors, such as our personal traits and those of the group we belong to. These characteristics serve as indicators of how we will be affected by adverse events. Coupled with the protection measures provided by society (social mechanisms that favour and maintain social integration), they will determine how we respond. Society must, therefore, meet the challenge of trying to minimise social risk and providing the necessary safety measures to palliate the effects of adverse events. From the conceptual standpoint, cooperation has evolved from the paternalistic criteria of providing “aid” to the underprivileged, to encompass proactive initiatives designed to eliminate the precarious situations that lead to exclusion and to achieve more equitable development. The shift has been away from addressing specific needs once they have been detected to trying to prevent their occurring, in a change that reflects a broader concept of solidarity. The new paradigm calls for taking on other people's needs as our own and working


together to guarantee human development and dignity. One of our major challenges today is approaching the phenomenon of globalisation from the perspective of solidarity to correct the enormous disparities separating rich and poor countries and to bridge the gap that separates countries, communities and people who enjoy growth opportunities from those that do not. Advances in the field of communications have helped foster an intercultural dialogue that aids us in pinpointing the malfunctions of a development model that is reaching the saturation point. There is still time to redirect this development, and correct the deviation which is in danger of leaving traditionally less favoured groups of society without any possibility of development at all. Far from an anti-globalisation movement, what is being advocated is a movement that seeks to divert the current tide away from creating greater social exclusion, towards models based on equity. This movement is not exclusive to people with disability, but champions the rights of anyone at risk of social exclusion. The expansion of the volunteer social movement is one of the symptoms of this transformation as a reaction to unfair models. In contrast to the increasing competitiveness and commercialisation of social relationships, the option for a lifestyle based on solidarity is becoming steadily more popular. Among the reasons behind this choice, there are two aspects of particular interest: on the one hand, a rejection of the current model that breeds fierce competition, the repercussions of which are beginning to be palpable in all aspects of life, including health; and on the other, the search for personal satisfaction. Surveys that examine the factors that contribute to good mental health highlight that people who dedicate part of their time to activities of solidarity enjoy greater levels of wellbeing. These people have the sense that they are working to help develop networks that address specific needs and where relationships can thrive in a spirit of social generosity. Social marketing is another exponent of the change in the value we place on solidarity and cooperation. Large companies have been quick to see how projecting solidarity contributes to their prestige and even helps bolster the bottom line. For large corporations, it is both socially and economically profitable to cooperate in solidarity programmes with organisations from the third sector. The organisations receiving help are likewise favoured, not only by the funds they are given, but also by the social "publicity" implicit in these actions. Finally, consumers have a better opinion of companies that collaborate with the third sector and show this when they purchase products. The movement backing the Tobin tax is another practical example of a new idea of cooperation, based on the increasing social awareness that the economic results of globalisation need to translate into a better distribution of resources. It is a question of combining social equity with efficiency in the public management of resources and of ensuring that the shocking distance between the rich and the poor does not get bigger. The idea, presented by the winner of the Nobel Prize for economics James Tobin, consists of levying a


small tax (0.05%) on all transactions in the international money markets, and devoting the money thus raised to improving the quality of life of all the planet's inhabitants. 2.1. Citizens with a social conscience

There is an evident lack of harmony between the non-profit sector where dynamic organisations are responsive to shifting needs and public institutions and governments whose unwieldy structures make them much slower in responding to society's demands. But it is also equally true that both sectors have room for improvement: The efficiency of both can be increased with measures to streamline their operating systems on the one hand, and the moral and ethical efficiency of their actions on the other. Whatever actions they undertaken should have the double objective of solving a specific issue, and of generating the bases for a more decent society in which the population can aspire to full citizenship as described by Marshall: 1Legal citizenship, which includes all the rights of the citizens in questions concerning the Law, 2Political citizenship, which includes all the political rights, such as the right to vote or to hold public office, and 3Social citizenship, which includes the rights of the citizens to certain social services such as healthcare, education, employment, social security, etc. Citizenship that does not include a broad social component is second-class citizenship. The first two types of citizenship, legal and political, do not alone guarantee citizenship for all members of society. In fact, without social citizenship, legal and political citizenship lose a great deal of meaning, as being a member of a group with no economic or social power means not having full rights, not receiving the same treatment before the Law, not having the same opportunities for being elected to a public post. Without social citizenship, legal and political citizenship are lame forms of citizenship. 2.2. The moral and economic competitiveness of solidarity

Recognising and valuing human diversity constitute one of the greatest challenges facing our societies today. It is not an easy task, and will require overcoming myriad economic and social processes built on preconceived ideas as to what is normal. These processes have long excluded people with disability and many other groups from mainstream society, and this has seriously undermined their opportunities for participation. A classic example of these excluding processes is the design of transport systems and public buildings based on the physical characteristics of the “average citizen”, with a complete disregard for people with motor difficulties, the elderly or children. Any member of society whose physique is outside the


"standard" is barred from the opportunities enjoyed by the “average” person. The result of design practices that are blind to diversity is not only the exclusion of many people from access to goods and services and participation, but a simultaneous impoverishment of the overall quality of the design and efficiency of these transport systems and buildings as well. As the transport authorities that have put adapted buses in circulation have seen, we have the technology necessary to eliminate many barriers and are now able to design spaces where many more people can conduct many more activities with greater ease, comfort and safety. In economic terms, structural exclusion and discrimination, as a result of a disability or for any other reason, undermine the efficiency of the economic system and of the labour market. A market which fails to take advantage of a considerable proportion of its human resources can, by no means, be considered either efficient or fair. Society as a whole is affected when the capacities of people with disability and of any other excluded person are neither recognised nor utilised. If people with disability and other excluded groups are allowed to join the labour market, employment becomes a reality for large numbers of people. Having a job will, in turn, give these people greater autonomy and independence, with all the material and mental wellbeing this engenders. Because there are few channels to tap this great human potential, it is wasted and our levels of social cohesion are lowered, leading to a drop in economic competitiveness. Exclusion and discrimination on the grounds of disability or on any another grounds actually engender a significant economic burden for the Welfare State. A good many, if not most support programmes for people with disability and other vulnerable groups which have been implemented in the past consist basically in providing for the maintenance of dependent citizens, but do not consider how to help them become qualified to support themselves. Reducing the dependence (and the mentality of dependence) that isolates the person with disability and creates, at the same time, a burden for the State, would be beneficial for everyone. Changes of this nature would generate attitudes, opinions and effects that would be highly valuable for society as a whole. Developing the social capital of a community so that all of its members can participate, show their solidarity and feel positive about themselves is a way of laying the foundation for a better future for all. Developing a strong Civil Society is closely linked to achieving a healthier society, with better physical health levels, and where the public feels safer. It has been said on many occasions that democracy is not possible without participation. This idea can also be extended to saying that the health of a democracy can be judged by the level of participation and sense of belonging of its members. Encouraging respect for human dignity and the integration of diversity are


concepts that form a part of a global approach. They find their place in a social model of inclusion that recognises in the diversity of its members the richness of its ecosystem, and that seeks to sustain and develop this ecosystem as a way of transferring wealth to society as a whole 2.3. The Disability Movement and cooperation in a spirit of solidarity

The long-standing political response to disability has been to provide social compensation through charity in a strategy that removed the problem from society's mainstream and circumvented the need to develop specialised social services. While proffered with the best intentions, this treatment has only served to emphasise the problem of exclusion and marginal participation. The absence of people with disability from the public stage, or their virtual “invisibility” in daily life has fed popular stereotypes about them that have, in turn, only perpetuated their social exclusion. An undeniable link can be traced between these prejudiced attitudes, the denial of equal opportunities and the inappropriate treatment of people with disability. Today, this situation is generally accepted as unsustainable. Our thinking has evolved to our recognition of disability as a form of social diversity, and our understanding that human diversity can best be harnessed if we create economic and social processes that uphold the equality of all members of society. The basic principle of equality, understood in our context as equal opportunities, is currently considered to be the obligatory point of reference for all economic and social structures. It is the idea behind the recognition of human rights for all members of society. Obviously, the principle of equal opportunities includes, among other things, the principle of non-discrimination. The organisations that represent people with disability have worked unceasingly to have disability recognised within the framework of equal rights. They believe that the focus must shift from the provision of aid, to positive change in terms of opportunities for employment and participation in society. Precisely because people with disability yearn to become active members of the community, the crux of every message and debate about disability must centre on the issues of human dignity, self esteem and the right to equal opportunities. People with disability assert their right to pursue the opportunities life hands each of us; they want to prepare to step into a relevant social role by getting the right education and to participate fully in society through employment. Not only do they claim these rights, they feel it is their duty to contribute to economic and social development. Citizenship based on equality means more than the mere right to protection: it also means accepting duties in return. People with disability claim not only the right to participate fully in society, they also claim the right to contribute on equal footing. The disability movement is inspired by the pursuit of fundamental human rights, and this has led people with disability to demand full inclusion in society, as opposed to exclusion, independence and self-determination, as opposed to dependence


and support and as opposed to paternalistic attitudes. This change in perspective is behind their demand that people with disability be offered the same opportunities to prepare for life as anybody else. Specifically, they are asking for all educational and training programmes to be opened to disabled children and students. However, if this is to happen we will have to own up to the fact that the instruments that facilitate participation in daily collective life, such as transport and communications facilities, have in the past excluded people with disability, and we will have to look for ways to eliminate these barriers to participation. In response to the demands articulated by the disabled population, we are now looking at the barriers erected in our environment that prevent the effective participation of people with disability. Some of these barriers are physical, others reside in our mental attitudes while others keep people with disability from using communications systems; all of them, however, prevent people with disability from contributing their talents to society. When we talk about overcoming barrier, the area of employment, a fundamental form of participation in our societies, has become a crucial matter of concern. People with disability aspire to nothing other than “integration in daily life”. To make this a reality, it will be necessary to devise policies that promote the full participation of people with disability in economic and social processes, respecting, at the same time, individual needs. Another crucial point is that the issues affecting people with disability should not be viewed separately from the rest of society, but should be fully integrated in the mainstream.

The growth and the development of civil societies, the participation of groups and activists who defend people with disability, the practice of convergence and the inclusion of questions of disability in the functions of all sectors, together with greater levels of awareness and improved mechanisms for communication, will be the confirmation of a world without frontiers for the rehabilitation of people with disability. The existing gap between knowledge and its application and the property of knowledge among final users will be reduced thanks to the effective management of knowledge and thanks to changes in management strategies Dr. Thakur V. Hari Prasad, Chairman of the Rehabilitation Council. India.

Focusing the issue in this way is beneficial not only for all people with a disability, regardless of its nature and severity, but also for society as a whole. The fight for the rights of people with disability, like the fight for the rights of any group that is excluded, is a fight for a better society, one which is more respectful all of its members. The way people with disability have chosen to defend their human rights provides a paradigm of how modern societies are called to accept differences and diversity in a spirit of cooperation. Through solidarity, we can apply today's technical advances to help achieve better quality of life for everyone.


3. COMPETITIVENESS AND SOCIAL COHESION: OPPORTUNITIES FOR INTEGRATION AND INCLUSION THROUGH SOLIDARITY In what turned out to be a very turbulent process, the 20th Century tried out and discarded a series of social theories that all in their way contributed to the society that we know today. The last century saw the birth of the Industrial Society with its accompanying advances in production and management techniques, to ultimately reach the insight that social cohesion is fundamental to modern collective life. Throughout the century, the different disciplines that make up the "management" sciences were assayed and honed. Through trial and error it became apparent that the systems based on Taylorism that initially increased productivity were incapable of maintaining desired rates of growth. It also became clear that personal motivation and a sense of collective satisfaction depended on more than material conditions, and that people had other aspirations that were more difficult to fulfil. Yet, when these expectations were met, they contributed to creating wealth, and spurred the distribution of this wealth through systems of social protection and structures based on social solidarity. Likewise, while these gains were palpable in the lives of all workers, and as new changes were implemented in step with the technological and managerial advances that made them possible, it became evident that this greater economic productivity did not automatically lead to a better and greater distribution of wealth and of the resources available. Just as it eventually became evident that there were limitations to the Taylorist techniques that had gotten the industrial society underway, we began to discern that it was impossible to continue to increase the competitiveness of our markets if they were rife with social inequalities and if large segments of potential customers had no access to them. We began to see that the ills that afflict our societies, a patent double standard and little social cohesion or diversity, actually act as deadweight that prevent the dynamic expansion of our markets. Real modernisation is much more that the application of technical advances and economic fashions. It results from an increase in the competitiveness of our institutions and corporations, when the rules of efficiency and competition are well-oiled and when strong systems that encourage social cohesion are in place. These conditions lead to the accessibility of the goods and services provided by our public institutions and markets. It is impossible to conceive of a modern society where these goods and services cannot be enjoyed by the majority of those who wish to participate actively in the economic and social life of their communities. 3.1. Globalisation that benefits all citizens

Aware that they must reach as many consumers as possible, open societies broaden their perspectives through continuous advances in processes and productivity. And today’s unrelenting technological changes have ultimately led to the globalisation of markets, projecting them beyond the confines of each


individual State, so that now it is possible to do business in another country without actually having to go there. Globalisation, outsourcing from distant markets and new distribution and mediation formulae have all pushed back barriers and shortened distances so that we can trade throughout the world surmounting the impediments of distance and isolation. These advantages, however, are not experienced by all citizens in the same way, regardless of their economic capacity or desire to participate in economic and social life. Nor have these advances reached all the corners of the planet in the same way, and today, globalisation is limited to the markets of advanced societies. It is most firmly implanted in places where a larger pool of resources combines with a sharper awareness that equal opportunities are important and that the barriers that limit competition and collective participation in the world's markets must be brought down. Furthermore, despite the globalisation of markets, what has yet to be globalised is access to these markets, and even in the most advanced countries very little has been done to correct the circumstances that lead to the exclusion or discrimination of certain groups, such as people with disability. Societies, of course, differ greatly from one another, and the perception of disability is far from globalised. Disability is seen in a different light in Sub-Saharan Africa than in the European Union. And indeed countries like Sweden which has been working for years in favour of inclusion have a different view than their European neighbours’. We cannot conceive of the same opportunities of access in certain countries in South America as we can in technologically advanced markets such as California or the eastern seaboard of the United States. So the reality of disability is highly varied and cannot be considered in global terms. If we examine disability in Europe, to give an example close to home, we see that there are around 40 million Europeans with disability. This means that approximately 10% of the population of the countries of the European Union have some kind of disability. In other words, they are blind, deaf, wheelchair-bound or have a lower than average intelligence quotient. Being disabled means that, objectively, these people start out with a disadvantage, of greater or lesser severity, yet a disadvantage nonetheless, when compared to their fellow-citizens. This means that for people with disability, opportunities in the fields of education, economics, employment and social development are greatly reduced. Translated into day to day terms that speak eloquently, people with disability are much less likely than their non-disabled counterparts to reach or complete higher education, unemployment levels among them are shocking, at twice or even three times the rate of the rest of society, and the few disabled people who do work generally have jobs requiring little or no qualifications, meaning that they are poorly paid. If we add to this the fact that, more often than not, they must put up with prejudices and negative attitudes with regards to their possibilities and capacities as people and members of society, we contemplate a desolate panorama which is badly in need of reform if we wish our societies to be open, modern and barrier-free. Change is all the more needed if we seek


the economic competitiveness that follows the social cohesion that is, as we have seen, the hallmark of a modern society. Above is a snapshot of the disheartening reality that awaits people with disability in the majority of the countries of Europe. Yet, in less developed countries and impoverished societies, the situation tends to be even worse. This harsh reality affects individuals, groups and society as a whole, and it is in urgent need of solutions. What have the most advanced countries, the emerging centres of power that generate decisions capable of changing our lives, done and what are they doing to modify or remedy this situation? When are they going to begin to apply the norms and regulations established by international organisations, with all that would mean as a stimulus and example for the rest of the world? The answer is that precious little has been done, at least until very recently. On the one hand, because no special attention has been paid to the problem, no real policies have been aimed at the disabled population. Likewise, and this is the crux of the matter, because the political will to build a social Europe has not existed until now, and because, until recently, we have not been aware of the cost of social exclusion, particularly as it affects people with disability. However, recent changes in some countries show that new attitudes are taking hold, and there is now a political will to strengthen the social dimension of Europe. Special attention is being lent to the issues affecting people with disability and concerted efforts are being made, particularly, to help them join the labour market. Although they may only be faintly perceived by society at large, the foundations of a social and employment policy for people with disability are being laid in developed countries, and both people with disability and the remaining members of society should encourage this initiative and help it grow. It is based on the integration of people with disability into the educational and productive systems and into all levels of social activity. Of course, these measures alone will not eliminate the multiple barriers that keep people with disability from participating on the same footing in all facets of collective life, in education, employment or elsewhere. Nor do they provide the tools to help each citizen fulfil the kaleidoscope of expectations we all cherish, with the hope of being the masters of our own lives and to live in environments where each and every one of us can contribute to improving the lives of our fellow citizens and of the rest of humanity. These hopes and concerns for a Society for Inclusion rather than one that tolerates exclusion are, unfortunately, still in their infancy. What is more, they are not shared throughout the world in equal measure; in countries where, even at the beginning of Third Millennium, poverty and underdevelopment mean that people are unable to live dignified human lives, these values are scarcely even perceived. In the legislations of many of the most advanced countries in the world, these values have found no place. When included, they


are expressed in the vaguest terms that need to be hammered into useful tools day by day, even in places like the European Union. However, this is the task before modern societies, endeavouring to define a social dimension where competitiveness and social cohesion are not irreconcilable, and where there are no impediments to the human development of 40 million members of the population. 3.2. The non-profit sector and the Social Economy: Initiatives for inclusion

A new society that promotes economic competitiveness alongside social cohesion requires and advanced and precise legislative framework. However, this alone will not bring about profound social change. Both the protagonists of this change and the rest of society will have to work hard to establish policies and practices that support solidarity and cohesion. Mechanisms and business initiatives will have to be devised to ensure that people with disability have access to education and employment and participate fully in all levels of daily life, including leisure, political and cultural activities. The inclusion of people with disability in all of these spheres must no longer be seen as unusual, but must be something that is expected as these people begin to exercise their unalienable rights, just like anyone else. These practices will also mean that competitiveness will go hand in glove with the social inclusion we all long for. However, we must understand that it will not happen merely by trusting in the new opportunities ushered in, for example, by the technological changes that are creating new, less localised economies. Gains made both in social cohesion and in opening new markets will have to be reinforced with specific efforts and plans, together with specialised policies. These efforts cannot let up until integration becomes the norm, and specific support becomes redundant. One of the building blocks to a more cohesion society is the decisive contribution of the “third sector”, or non-profit organisations (in their different legal configurations) and companies operating in the Social Economy. On the one hand, they play a key role in detecting social needs and in providing remedial services that complement public policies. In other instances, they step in and substitute official programmes when these fall short of their objectives. Finally, the non-profit sector is one of the driving forces behind economic development, as it generates considerable economic activity and employment in modern society. In this sector there are important initiatives that are bearing fruits and whose projections are promising for the first decade of the new millennium. Nonprofit organisations are successfully developing markets and conducting business without compromising policies based on solidarity. An example is the Spanish ONCE (Organización Nacional de Ciegos de España – National Organisation of the Blind of Spain) which is using its business acumen to reach out to other sectors of disability, with models that can be replicated in both


institutional and corporate settings and that incorporate business practices that are as competitive as any in the private sector. It is the goal of the ONCE to expand its activities to reach a wide range of disabilities through the Foundation it has created for this purpose. Since its creation, the ONCE Foundation’s stated corporate mission is to help people with disability reach the labour market and participate fully in the life of society. It has endeavoured to demonstrate that this is not only possible and morally desirable, but also competitive and profitable as well. Hence, at the beginning of the 21st Century, activities conducted with a social purpose in the productive sector such as those mentioned above have led to cooperation projects between institutions and corporations that have helped thousands of people with disability train for jobs and subsequently become employed. These are a few examples of how some of the aforementioned strategies for social cohesion and inclusion have been shaped as active policies. The success of these initiatives merely confirms society's receptiveness to the entry of people with disability. These experiences also prove that corporate competitiveness is in no way compromised by social solidarity, but quite the contrary. In these cases, corporations have succeeded in utilising the capacities of all their workers while adapting production processes to the capabilities of their employees. This means that with confidence the experiences gained in these pilot programmes can be extrapolated to the business sector in general tomorrow. And when the day comes when these practices become widespread, it will no longer be necessary to maintain special policies and plans to reinforce the entry of people with disability into the work force. Some businesses have adopted practices, as we have seen above, that have succeeded in implementing economic activities with a positive impact on social cohesion. These firms pursue two closely bound objectives: optimising their business results (competitiveness) and conducting activities that are efficient in building a more cohesive society (solidarity). Their goal is to integrate everyone, without exclusion, in the economic process and distribute the wealth thus generated in an egalitarian way. These activities are now being considered as articulating the "Social Economy", a segment of the economy that is gathering force in developed countries and that is the very backbone of developing areas, as it generates more employment and more enterprises today than the mainstream economy. In the words of Marcos de Castro, Chairman of CEPES (Confederación Empresarial Española de la Economía Social - the Spanish Federation of Companies in the Social Economy), “The Social Economy, and the companies that comprise it, represents a specific economic sector, with its own personality, and should be considered as such. Its goal is a business one, to generate wealth, but to do it for the collective and in a socially responsible way: it should have a positive effect on all the people who took part. It is


never based on personal gain, but understands that the economic results of a business activity based on the efforts of a collective must have positive repercussions for everyone who participated." A company in the Social Economy is the sum of the efforts of all of its workers. These efforts, often unassuming and silent, but no less valuable for it, go towards getting the job done without losing sight of "the other", our travel companions on the business adventure. Each worker understands that work itself, the means to create wealth, belongs to the people who perform it. People contribute their personal savings and their dreams and, at times, everyone is called to believe in utopia, in this case a utopia that can be reached through hard work in a spirit of solidarity and hard work to create wealth for the group: collective wealth that can be used by the group of persons who have taken part in the enterprise, as it belongs to everyone. One of the values of the Social Economy is solidarity, and this means taking a strong stance. Solidarity is a broad and complex value, rich in nuances, whose objective is to involve a group of people in finding positive solutions to the problems that affect them and others: to improve their living conditions, broaden their personal horizons, and through the achievements of the group, allow everyone to grow. When it comes to defining what solidarity means for the Social Economy, it is seen as the need to create economic value for the collective, or to create companies that generate collective wealth and jobs for everyone, without exclusion, and that promote social cohesion and inclusion. The activities of the Social Economy are always directed towards those segments of the population with difficulties in accessing jobs, whatever the reason (disability, exclusion, gender...etc.). Solidarity is so closely woven into the fabric of the Social Economy, that solidarity is not possible without the company, or if the company fails to generate wealth. The creation and management of profitable companies is thus the raison d'être of the Social Economy if it is to live up to its basic principles. 3.3. Opportunities for cohesion in the Interactive Society

It boggles the mind just trying to imagine what science and technology will have in store for us during this century, and how these advances can positively affect social cohesion and inclusion. However, we must never forget that these advances all carry the threat of leaving many people behind by broadening what has come to be known as the "digital divide". With foresight, the more developed countries are trying the devise ways of bridging this divide that gapes between those who enjoy the multi-dimensional features of the Interactive Society and those who cannot. Efforts are being made in the public and private sectors to provide the stepping stones to "digital literacy" through access to the work force and to training. The new network technologies and their functionalities also provide endless


leisure opportunities that must likewise be extended to the whole population. Otherwise, the competitiveness expected from these new digital products will be undermined if they cannot take full advantage of everything that a barrierfree society has to offer. Once this becomes reality, inclusion will be the norm, and we will no longer have to defend it with arguments about its economic and social profitability. Before this day dawns, however, we will have to convince the business community that non-discrimination is not synonymous with a drop in productivity, particularly in the new knowledge-based economies where technical aids and design for all will open access to all people, under the most varied conditions and circumstances, to highly diversified employment that is adapted to the workers' capabilities. Throughout this process, with a view to defining policies that can be widely adopted and monitored, the Public Administrations must break the ground and be the first to promote social cohesion by overthrowing discrimination and championing inclusion. They must be the first to ensure the accessibility of their installations, of their production processes and in the delivery of their services, making available the technical aids required for people with specific disabilities to use them. Thanks to strides made in reconciling these concepts, competitiveness and cohesion are more compatible today than yesterday. This compatibility, however, does not depend on technical circumstances or the processes themselves, but rather on the people, institutions and corporations that believe that these ideas are viable. They must be convinced that it is more profitable to broaden their business plan to include personal opportunities and benefits than to stagnate with the limited vision of economic profits alone. This limited view leads only to the exclusion from active life of all people who do not "fit" into pre-set situations. And these preconceptions have proven today to be outmoded in light of the new economies based on collective intelligence, imaginative outsourcing and the automation of processes. The affirmations above should be placed in the new social context that is calling into question the cult of competitiveness which, according to some of its most enthusiastic propounders, at times requires turning our backs on social responsibility. The crisis that has shaken our markets since the end of 2001 reflects a lack of confidence that has only been acerbated by evidence of mismanagement and bad business practices, and is calling into question the models that advocate competitiveness and efficiency at all costs. People now are turning to the criteria of corporate governance. Many believe that good governance means corporations must shoulder their social responsibility, and be open to the integration of human diversity and respect for different cultures and for human differences. An example of this shift in focus came during the European Conference on Social Economy, held in Sweden in June, 2001, when there was a debate about the need to include clauses on positive discrimination for companies that, from the standpoint of social responsibility, implement measures that give preference to disadvantaged groups (hiring people with disability, helping them keep their jobs, generating jobs suitable for them,


etc.) and environmentally sustainable projects. As people seem to be losing confidence in old business model, a new sensitivity is growing that emphasises that competitiveness is indeed compatible with a commitment to social progress. In this social atmosphere, discussions about how to encourage collective cohesion and integrate all people in the most varied processes of productive and social life take on a new and attractive dimension. People are beginning to see that inclusion is a necessary element of social cohesion. More specifically, the integration of disability can be the cornerstone of a new paradigm for the inclusion of any kind of difference. This new paradigm will set the model for a society where no human resources go undeveloped. Through inclusion, we will learn not squander the human aspirations, hopes, expertise and know-how that we all hold dear and that can only flourish if each of us is allowed to join collective life. We must thus create a space where our own personal qualities can be developed and thrive and where we can all contribute to building a better life for future generations.


Despite efforts to improve their plight, people with disability continue to be the victims of the social injustices acerbated by the widening gap between the world’s rich and poor. Many unresolved issues remain on the agenda: health, accessibility to the physical environment, education, employment, social and support services, social protection, leisure, culture, sports, the consumer society, the legal framework and the framework for participation. Old problems have yet to be solved and on-going needs have yet to be addressed. We need to revise our methods of intervention and behaviour patterns to adopt more appropriate strategies to make effective the inclusion of people with disability. This struggle is, after all, none other than the defence of human diversity itself, the best arm there is against social exclusion. The last chapter of this Report examines the roads that will lead towards a future in which cooperation, solidarity and diversity become the foundations of a fairer, more egalitarian social order. To define the general framework of action it considers necessary in the field of disability, the Report draws up a series of broad guidelines and recommendations.

1. THE DEVELOPMENT OF THE NEW MAN AND HIS RELATIONSHIP WITH FUTURE GENERATIONS: THE VALUE OF THE ETHICAL REFERENCE OF INCLUSION On the threshold of the new millennium, the ambition behind the integration of people with disability in collective life goes well beyond their mere incorporation into all the areas of human activity. It seeks to forge a model to combat exclusion – a model that upholds the rights to personal dignity, nondiscrimination and participation in building a better future for all humankind. These are the unalienable rights of all members of society, whatever there individual circumstances. The fight for the social inclusion of people with disability is in reality being waged to defend human diversity itself. It is paving a road that will join all societies in their struggle to combat exclusion. 1.1. Inclusion as a defence for personal dignity

The Universal Declaration of Human Rights, in its first article, recognises that "All human beings are born free and equal in dignity and rights. They are


endowed with reason and conscience and should act towards one another in a spirit of brotherhood”. This statement, which is repeated in all regional Conventions on the matter and in the Fundamental Charters of all countries, illustrates the most crucial aspects that define human beings. In fact, it is always appropriate to emphasise the attributes which are the essence of all people: freedom and equality. No qualities of being, including disabilities, can alter these two essential and basic attributes, nor can they diminish the dignity and rights that are unalienable to all human beings. The accidental differences between people that do exist must, therefore, be considered in the light of the principle of non-discrimination. This principle goes so far as to contemplate corrective measures to avoid violating the dignity and rights of each individual, a violation that endangers the dignity and the rights of us all. From the concept of dignity evolve the notions of integrity, decorum, honour and excellence, which are all severely eroded when any human being or group of persons finds their rights reduced or threatened. Consequently, when this occurs, all members of society, whatever their position or role, must assist in re-establishing these rights. To preserve its own dignity, the social mass respects and protects the dignity of all. The society that permits the violation of the rights of individuals or groups of people cannot be esteemed to live with dignity. Through their fight for equality, people with disability are very slowly contributing to strengthening human dignity on both an individual and social level. Slowly awakening to this struggle, societies are beginning to work to overcome the shameful situations that have led to the phenomenon of discrimination against people with disability. Social exclusion of the disabled has taken on many manifestations, from the lack of adequate access to education, training and employment, to the lack of adequate access to physical spaces, communications, information, culture, transport, sports and the arts; people with disability have barely participated in politics and collective life; they have been absent from the decision making process. Indeed, people with disability have been invisible to society. Evidently, their timid but increasing appearance in the public, national and international arenas will contribute steadily to reinforcing human dignity and help encourage societies to improve relationships between their members. On the path towards the consecration of the doctrine of human rights for people with disability, it will be necessary to work intensely, both intellectually and emotionally, so that society can interiorise the value of diversity. This will be a crucial step on the road towards true social integration and, definitively, towards upholding the dignity of all. 1.2. Promoting solidarity as a way of building a civilised society

The idea of solidarity means joining others to advance a specific cause. A life based on solidarity is intrinsically connected to the concept and action towards the integration of diversity and, consequently, human cooperation. In fact, a


life based on solidarity requires an attitude of empathy, of putting oneself in the place of others and contributing reciprocally, according to each person's social role, to complement each other in the pursuit of a specific goal. In fora on disability, there is a striking sense of solidarity among people affected by disability. Precisely because they are all different from the norm, they are more tolerant of others and better able to grasp differences in each other. Society at large, however, tends to think of people with disability as truly “disabled”, and is blind to their talents and skills. The feeling seems to be that the limitations caused by the disability erase all positive qualities and attributes. To society, the person with disability stops being a boy or a girl, a young or older adult, a member of one ethnic group or race or another, male or female, with a specific religious faith, a member of a political party, a worker, a member of a profession, a father or mother, a child or sibling or any other attribute that we use to identify other human beings. All of these misconceptions make it very difficult for people with disability to integrate in their social environments. The problem is that exclusion is not only an attack against the personal dignity of its victims, it causes social damage as well. It prevents the group from enjoying the contributions which might have been made by the person excluded, and prevents the group from utilising the abilities and potential of all its members. The defence of inclusion means an advance towards a society in which all members recognise each other as such, and where all contribute to projects that benefit the group as a whole. Today, the model founded on democratic principles that advocates social inclusion and integration tends to affirm the human rights of the various groups that compose society, as an intellectual state. Now it also intends to add a legal component to the feeling of human solidarity, without which compliance cannot always be enforced. However, once society as a whole, and each member individually is able to interiorise the fact that the differences that may seem notable between us in fact do not alter the essence of equality in terms of dignity nor the rights of people with disability, true integration and human cooperation will have taken a transcendental and qualitative leap forwards. In the society capable of that leap, this will produce a natural and intimate tendency towards a lifestyle based on solidarity. The social mass benefits greatly when it adopts these behavioural paradigms, principally because they reinforce the concept of the human family, helping the collective move up various rungs on the ladder towards a better society. In statistical terms, it represents the conviction that one of the indicators of human development is the extension of better living conditions to as many


people as possible including, naturally, people with disability, who account for an estimated 600 million people throughout the world. If we calculate the direct family members of people with disability, then the number of people closely affected by the phenomenon would be three times higher. Even in terms of productivity, the model of integration and human cooperation will produce net gains for society, by affording many people with disability opportunities for dignified employment compatible with their limitations. This will endow them with greater autonomy and independence both for themselves and for their families, with all the psychological and material wellbeing that this implies. Integrating people with disability into the work force will help society alleviate the current lack of competent manpower, belaboured by hiring restrictions. The best route to the desired model of solidarity, integration and cooperation is to integrate disability into every aspect of collective life, so that it can become a daily reality for all citizens everywhere. Disability should enter the mainstream and cease to the considered an isolated problem and the bailiwick of Civil Society and the non-governmental organisations specialised in the field or in minors or racial or ethnic groups, etc. Disability should be put on the agenda of the trade unions, professional associations, businesses and, of course, central, regional and local governments, ministries, public services, parliament and legal systems. While disability should be mainstreamed, it should also remain on the agenda of specialised international fora and organisations. 1.3. Ethics in favour of human diversity: From civilisation to decency

People with disability face discrimination that affects every facet of their personal development. As we have pointed out, architectural and communications barriers constitute impediments that are particularly widespread. Unfortunately, in most of the world, the associations of people with disability have not yet consolidated into strong pressure groups, and to date they have had only very limited success in lobbying to reverse these situations. An appeal once again to the paradigm of the protection and promotion of the human rights of people with disability is appropriate in this context, and the supranational legal framework will allow us to speak the same language on this subject throughout the world. When acts of discrimination are detected, we are compelled to invoke the rights to equality, mental integrity, honour and privacy, which are always threatened in these cases. However, if the interests of the person with disability are to be safeguarded, in certain instances, these rights must be balanced against others like the right to healthcare, social security, personal freedom, access to education or access to employment. The message should place the accent on equality, dignity and freedom. This message is born from our collective sense of ethics and it requires society to


act according to high standards of behaviour. Most particularly it enjoins our political and civic leaders to set the example of ethical behaviour. Thus, our new collective ethics must go further than simply shunning exclusion, to actively promote a decent society. This new society will set standards of nondiscrimination and will be ever-vigilant that neither scientific nor technical advances nor new cultural guidelines create new barriers to integration. We must, therefore, go beyond the ethics of civility, to the recognition of personal dignity. We must place a high value on actions based on solidarity and sharing, to achieve a new social order. Before this can happen, though, it will be necessary to pass legislation to create the tools to defend dignity and the value of cooperation. Only in this way will the models of integration establish the standards by which everyone, each with his hopes and expectations, may develop all of his social potential. These new standards will hail diversity and difference and will recognise the unique value of each individual. 2. PROPOSALS FOR DEBATE AND ACTION ON DISABILITY AND HUMAN DEVELOPMENT 2.1. New strategies for confronting old problems

Through its analysis of the situation of people with disability throughout the world, this Report has shown that the attitudes, values and policies that the international community established decades ago are still in force today. At the same time, the Report shows that there is an increasing awareness of the negative impact of discrimination, inequality, inadequate participation and the denial of rights. These issues are relevant both for the disabled population and the community at large, and the Report indicates that Public Authorities and Civil Society understand they must share the responsibility of implementing change. This change, however, will only be possible through concerted and continuous action, motivated by the will to intervene and transform social reality. At the same time, the Report has shown that neither the rhythm nor the intensity of the advances that have been made and the programmes that have been executed to date have had a significant enough impact to counter the disadvantages people with disability face from the outset. Furthermore, in many cases, legislation has not provided any real arms against discrimination, nor tools that serve to stem social exclusion. This analysis of disability throughout the world shows that we continue to be immersed in the same problems which have, for decades, kept disability on the agenda of international organisms. Indeed, it was during the decade of the seventies that disability became a world concern and, as such, was mentioned in various UN Declarations. The approval by the General Assembly of the United Nations of the World Programme of Action Concerning Disabled Persons in1982 opened the door to the specific provisions accepted by the international community on disability.


This declaration established the general principles that would be used by the different governments in developing their own regulations and strategies aimed at compensating for the disadvantages faced by people with disability. These measures provided the first tools to recognise the equal rights of the members of this collective and to establish the principle that they should enjoy equal access to opportunities as a precursor to full participation in the community. It would be fair to say that the World Programme of Action has served as an instrument to standardise and give coherence to all the later actions proposed in the field. It was the mechanism that set in motion policies to provide services for people with disability throughout the world, while orienting the strategies that comprise the main axes of prevention, rehabilitation and the promotion of equal opportunities. Thanks to these developments, disability is on the docket of innumerable legislative bodies and has been brought to be attention of politicians and the public at large. Something else that is extremely important is that today throughout the world common values and principles are being propounded with respect to disability and to human diversity in general. A different question, but one which is also very relevant, is whether a common strategy is being followed in the structures of intervention, and whether the methods adopted and their focus are adequate. We need to evaluate whether enough is being done to develop programmes and practices aimed at improving the situation of people with disability, and whether they are being deployed fast enough to keep up with the problem. A recapitulation shows that the agenda for disability has not changed for decades, as though disability were unaffected by the lightning-paced changes that are transforming the rest of the world, and as though the process of transformation were not bringing new risks and new threats which loom ahead of us as both challenges and opportunities. We should stop to reflect that despite the efforts made to alleviate their plight, the situation of people with disability in the world continues to be marred by the same social exclusion and injustice that have existed for decades. These problems are only growing worse, like the breach that separates wealthy and poor nations. Health, physical accessibility, education, employment, social services and support, social protection, leisure, sports, consumption, legal guarantees and participation all continue to crowd the agendas of all governments when examining the question of disability. We are speaking, therefore, of old, unresolved problems and of old, unaddressed needs. From this perspective it is absolutely necessary to consider whether the arguments we had adopted and the objectives we had set ourselves continue to be valid, or whether they have changed with the new social contexts we must deal with today. This analysis should allow us to revise our methods of intervention and our behaviour patterns, to adopt the necessary approaches to design more appropriate strategies to achieve our goals.


As the introduction to this chapter states when discussing the value of an ethical reference for inclusion, human dignity and real equality for people with disability, these issues continue to be the driving force behind all our efforts. To reach our objectives, we know we must eradicate all forms of discrimination, whether it is direct or indirect, and we also know that we must exercise positive action. The combination of positive action and nondiscrimination should set the pace for all activities undertaken in the field of disability worldwide by all the social players: Public Authorities, institutions, corporations, companies, and organised and individual social groups. These values and principles have been taken up by the international community, and are expressed in the norms and the rules that it adopts; furthermore, they have been transposed in the legislations of the majority of countries. The international community also shares three objectives in this matter: to prevent disability and reduce and attenuate its consequences; to guarantee full and active participation in society; and to achieve as a high a level of independence as possible, based on personal freedom of choice. We are endeavouring to interpret the new social contexts towards which society and individuals are developing, to better understand the nature of the risks and threats these may bring for people with disability. We must devise appropriate responses to reduce or to eliminate the impact of these threats to safeguard the interests of those who feel threatened. In the same way, we are endeavouring to better understand the opportunities that these new contexts offer, so we can rise to the challenge of improving the living conditions of all the world's inhabitants. We know increasingly more about how people with disability live and the factors that influence their lives, but this increased knowledge does not always guide our strategies and almost never accompanies our actions. The support of the international community has been instrumental in making governments and the social agents more sensitive to the obligations that they should take on to respond to the needs of people with disability. We have spent decades working on the minimum requirements in this matter, drawing up multilateral regulations, social charters, codes of conduct, specific legislation, all manner of programmes, while the reality that most people with disability face remains little changed. As a world community, we have taken up values that are already incorporated into our norms and rules, but not always into our mental makeup or our behaviour. Our expectations and needs could be satisfied if we are able to consolidate the commitment of all the social agents behind improving the conditions that surround the lives of people with disability. Progress has been made, but it is not enough. To continue moving ahead, we must forge new strategies that are coherent and realistic. The recommendations that we forward below are all the fruit of the analysis of the validity of the principles, approaches, methods, and specific contents of the policies applied in the field of disability over the last few decades. With these reflections, our intention has in no way been to be provocative, but simply to


recast these principles, approaches, methods and practices in the light of the new social contexts we are facing today. The contributions and proposals presented in the next two sections aim to emphasise a series of principles and the specific actions derived from them which seem to us to be especially relevant. The list is not meant to be exhaustive, but rather a synthesis of the main ideas expressed in this Report. We maintain and reiterate the importance of the ideas, arguments, reflections and nuances contained in the first four chapters of this document. The inclusion of these last few lines is only to cover the tips of the infinite icebergs glimpsed throughout the Report. 2.2. The general framework for action with regards to people with disability: evidence, principles and criteria

The broad suggestions and guidelines presented below are intended to establish the terms of reference for what we could call a general framework for action in the field of disability. They are articulated around different subject groups, beginning with a declaration of the principles inspiring the call for action, with an exposé of the evidence supporting the position, to finish with specific recommendations. 1º PEOPLE WITH DISABILITY MUST TAKE CHARGE OF THEIR OWN LIVES People with disability themselves must be the point of reference of any plan concerning disability, and must take charge of their own lives. The process of integration, with the help of family networks and social solidarity, requires an increase in the social participation of the organisations representing people with disability. A) The person with disability should be in charge of his or her own life and should be at the centre of this reflection. The disadvantages that affect people with disability can be modified and reduced, since disability should be understood as arising through the interaction between the individual and his or her environment. This relationship is dialectic and modifiable. The integration of the person with disability in his environment allows him to interact with it, activate it, transform it, and adapt it to his requirements and in line with his limitations. Making society's resources available to people with disability will facilitate this interaction and allow people with disability to make personal choices about how to live, and what best suits their wishes and abilities. The limits imposed by the environment on people with disability must be minimised and it is the responsibility of all of society to ensure the success of this endeavour. Changes must be made in areas that play a specific role in integration such as healthcare, education or employment to guarantee accessibility, and here the institutions have a greater responsibility. Finally, the


process of personal choice and achieving independence must have legal protection and must be promoted through the positive action of the Public Authorities. B) Family and support networks should be the co-protagonists of the integration process. The role of the family has been a determining factor in the social integration of people with disability, since it provides physical, material, psychological and economic support in view of the disadvantageous situations that mark the lives of people with disability. Changing social roles and the shift away from the traditional family structure have made it necessary to reconsider the relationship between the responsibility that society has towards people with disability by aid through the Public Authorities, and the support traditionally provided in all communities and cultures by family and support networks. The capacity to lead an independent life is the natural aspiration and point of reference of all people with disability. Not all societies are able to contribute decisively to making this aspiration reality, nor can all people with disability realistically achieve it. The family, therefore, must have technical support to provide adequate care depending on the type of disability, and must also receive financial support and incentives to providing care within the home. Our Public Authorities must help maximise the complementary nature between services provided by the State and those provided by the family, and must design programmes and incentives that make it possible for family members to work outside of the home, while caring for a disabled member. These measures must be compatible with the right of personal choice of all citizens in terms of the way they want to live their lives. C) More channels should be opened for participation in society. Key to the defence of the interests of people with disability is the participation of the organisations that represent them in all social spheres, in collaboration with all the social players and Public Authorities. These organisations have proven their capacity, and act as networks to defend and support their members. Their role should be reinforced, with guarantees that they represent their constituents validly. Their work should be directed through specific channels, and through their participation in the greater social dialogue, they should be expected to achieve results. D) Multi-discrimination erects additional barriers to the integration process. We are often unaware of the fact that disability can be the cause of an additional source of discrimination for people who are already the victims of discrimination on other grounds. The risk of social exclusion that affects certain segments of the population and minorities can be aggravated if it is compounded by disability. To be disabled in a society which also discriminates on the grounds of race, gender, religion or any other condition means that a disabled person will have to surmount multiple disadvantages. Discrimination for multiple causes particularly affects women with disability all over the world. Our governments should espouse special programmes to correct this situation.


2º PARTICIPATION AND VISIBILITY IN SOCIETY The more visible people with disability are, the more they will be able to participate in society. Building a positive collective image of disability enriches a community’s value system and allows it to advance towards becoming a fully inclusive society.

A) Visibility of the problems of people with disability strengthens social co-responsibility and promotes participation. People with disability have been living in an “invisible society”, systematically hidden from view. The stereotypes of disability have been believed by the Public Authorities and the media, the families of people with disability and people with disability themselves. We must make people with disability and their difficulties visible to society. The media have an important role to play, and must take this responsibility on board. At the same time, people with disability and the associations that represent them should become aware that they have a voice in society. They need to accept that they must take charge of their own situations; they must not allow others to make their demands for them or adopt solutions that will affect them. Governments should make more progress in finding ways to include people with disability in all decision making processes. B) Building a collective image of disability is transcendental for the community's value system. Once we have rid ourselves of the stereotype of disability as a stigma it will be possible to establish the image of disability as being just one more difference in a world which is quickly learning to value and integrate diversity. The Public Authorities have a role to play in promoting new images of disability and the media have a major responsibility in assisting in this task. At the same time, the images and the visibility of the phenomenon of disability and the active role people with disability can play in society must be based on improved knowledge of the subject itself. Statistics and qualitative analyses of the disabled population are vital elements to quantify the scope of the problem, so the necessary resources can be allotted to combat it. The Public Authorities must take an active part in all of these advances. C) Mainstreaming the image of disability. Our collective image of people with disability is riddled with prejudices and stigmas that induce social rejection and act as invisible barriers to full participation and integration. Learning to live with diversity and differences will allow us to understand disability better, and when this happens the image of disabled people will become mainstreamed, accepted as yet another natural manifestation of social diversity. Promoting new attitudes about disability among the communications media and improving their relationship with people with disability will contribute to changing the way society views disabled citizens, and will help bring the image of disability into the mainstream, exactly where it belongs in an inclusive society.


3º POSITIVE ACTION AND THE COLLABORATION OF ALL THE AGENTS ARE FUNDAMENTAL ELEMENTS FOR INCLUSION Setting the processes of social integration into motion is one of the most important responsibilities of our Public Authorities and it is their job to generate the necessary conditions for the cooperation of institutions, corporations, social agents and society as a whole, developing coordinated and permanent positive action policies and implementing programmes between the public and private sectors.

A) Positive action supported by the Public Authorities is a fundamental element in social integration. Society as a whole must participate in guaranteeing the human dignity of people with disability through nondiscrimination and real equality, and positive action is one way of doing this. Once a community adopts the principle of positive action, it must create the necessary legal framework to uphold it, with the conviction that underprivileged groups must receive special treatment if they are to overcome long-stranding inequalities and begin to exercise the rights that will translate into equal opportunities. The Public Authorities are responsible for taking the measures to prevent discrimination, but these in and of themselves will not substantially change inequality, because they are incapable of modifying the reality of people with disability. Our Public Authorities also need to take positive action and integrate this principle into all the social processes aimed at promoting the integration of people with disability. B) Integration is a responsibility which affects everyone, although in different ways. It is necessary to redefine the social responsibility of our Public Authorities, institutions, corporations, companies and of the public in general regarding the integration of people with disability. It is the responsibility of the Public Authorities to pass and enforce the regulations necessary for positive action to be effective, but they are also responsible for promoting programmes and action plans, for financing them and providing an example of good practices to be emulated by society. Because the integration of people with disability must be placed at the top of the social agenda, our Public Authorities are compelled to exercise positive action. Only from this leadership position in collective responsibility will the Public Authorities be able to amalgamate the other social actors to carry out a coordinated and constant campaign. C) Work programmes carried out jointly by the private and public sectors, involving the Public Authorities and Civil Society, are more effective and more coherent. Policies for social services vary widely from one country to another. Simply because in some places, the State's obligations are managed in collaboration with the organised civil sector does not exempt


the government from its responsibilities. These new alliances between the public and private sectors to deliver programmes to specific groups of people have proven to be very coherent and efficient. They are coherent because they are managed by the representatives of the target population who contribute their expertise to help devise solutions, and they are efficient because they are often manpowered by volunteers and by-pass administrative inefficiencies. Our laws should be revised to establish new spaces where public-private alliances can thrive and manage programmes with the participation and cooperation of the organisations that represent people with disability. 4º DISABILITY MUST BE A PRIORITY ON THE SOCIAL AGENDA In a world where disability is growing and becoming ever more diverse, closing the social and economic breach between people with disability and mainstream society will require more resources. These resources should be a priority in the social spending of governments, and an ethical reference within the strategies of social responsibility adopted by companies.

A) Disability is a phenomenon that continues to grow and that manifests itself in new ways. Advances made in prevention and rehabilitation reduce the impact and the consequences of disability. However, disability is a phenomenon that is more and more widespread as a result of poverty, poor healthcare and poor social conditions for large segments of the population throughout the world. New factors are contributing to driving figures up as well; wars, abject poverty and the degradation of the environment are other direct causes of disability, an unjust condition that undermines human dignity. The community must be made aware of the unhealthy working conditions that exist throughout the world, where often the most rudimentary safety measures are lacking. Paradoxically, greater life expectancy and the general ageing of the world’s population is bringing disability to an increasing number of people in the later stages of their lives, when they struggle to maintain their dignity and independence in the face of severe impairment. Each one of these new forms of disability requires specific treatment and additional economic resources, along with new forms of social intervention. B) Full and effective participation in society requires making more resources available to people with disability. Independence and freedom of choice are the keys to guarantee the full and active participation of people with disability in society. Disability is a manifestation of human diversity and the differences between the people who comprise society, and the full incorporation of every member can only enrich the community as a whole. However, the full participation of people with disability will only be a reality when they themselves are allowed to take charge of their own lives. Full participation means more than exercising civic rights and duties; for people


with disability, it means exercising the right to equal treatment and equal opportunities every day. Freedom and participation are not simply formal questions; if they are to be fully exercised, people with disability must have the same access to goods, services and opportunities as the remainder of society. More resources are required if people with disability are to overcome the initial disadvantages they must overcome to take their rightful place in the general social context of their communities. C) Current economic development does not reduce the breach separating people with disability and the rest of society. The effects of recent economic growth have not been neutral and, far from contributing to closing the gap between developed and underdeveloped economies, they have widened the breach between them. Likewise and closer to home, sectors at risk of exclusion are now worse off with regards to the rest of the population than before. The distribution of growth in society exaggerates the differences between segments of the population. People with disability continue to be confined to the fringes of society and, in less prosperous countries, they comprise the most vulnerable segment. For growth to be sustainable, it is necessary to offer people with disability real opportunities. However, it is also necessary for us to learn together how to recognise the new risks and challenges before us if we are to reduce the uncertainties, eliminate the personal disadvantages and permit progress in human development. D) Disability should be a priority in government social spending. When governments reduce their social spending, less money is available for essential programmes in the disability sector. Prevention and rehabilitation require significant financial resources from the public purse. New focuses consider disability the result of the interaction between the person and her environment, believing that it is now the environment that should be changed and not the other way around. This attitude, applied to the world of employment and daily life, has substantially changed rehabilitation policies, methods and objectives. The field of ergonomy is making decisive inroads in providing a more suitable interface between the person, his environment and the activities to be conducted there. Our Public Authorities must support this work and make it a priority, and if these issues are not addressed correctly now, they will involve greater social costs in the long term. E) The integration of people with disability should be included in the ethical behaviour that informs responsible corporate strategies. The new directions that the world economy is taking and the rapid process of globalisation are changing many of the landmarks in our surroundings. The effects caused by these changes lead us to question whether these processes are being correctly directed and governed. Their negative effects on protection, employment, health and the environment seriously affect all of the population, but they affect the less favoured sectors more seriously still. At the same time, they betray the public’s belief in the goodness of in progress and sustainable development.


Corporations and companies are responding to these challenges by redefining their ethical positions and conduct. Corporations throughout the world are assuming their social responsibility, in a strategy aimed at guaranteeing the acceptance of universal values and establishing practices that are coherent with these values. The value systems we all cherish and the ethical norms implanted within our communities and countries compel corporations to act ethically towards people with disability. Working with the organisations that represent people with disability, corporations must design and establish objectives, and identify the actions necessary to guarantee the effectiveness of the regulations that safeguard the incorporation of this minority. Codes of conduct that cover corporate responsibility are ideal instruments to give people with disability access to the positive effects of growth. 5º THE NEED FOR NEW STRATEGIES AND APPROACHES New strategies and guidelines for disability must be designed to respond to today's new environments and circumstances. Priorities should be education and employment to create a solid social network supported by the principles of non-discrimination, positive action, mainstreaming and specialisation. The mechanisms designed to promote these must be appropriate for territorial factors and must contemplate disability as the right to be different, in a spirit of respect for diversity. A) It is necessary to change strategies and approaches. If we accept that, despite the advances that have been made, inequality still exists and the agenda to address the problems associated with disability not only continues to be unresolved, but also has hardly evolved over time, we must ask ourselves whether we have adopted the right approaches, or whether our strategies are inadequate and applied to social contexts we do not know how to interpret. Since the values and norms proposed have been fully accepted by the international community, it is, therefore, time to question the methods and strategies applied in the field of disability to redesign new ones that are adapted to the new circumstances surrounding people with disability. B) Focusing on the general disability agenda does not prevent us from setting priorities and time frames to implement each action. The issues that comprise the international disability agenda are relevant and coherent, and should be contemplated as a whole. Nevertheless, it is still important to set priorities and objectives that can be met in the short and medium terms. In our societies, education and employment are particularly significant, as they are intricately linked to the processes of social integration. Exclusion from the mainstream educational process perpetuates disadvantages throughout a person’s life, as it makes interacting with others difficult, confines the person to solitude, undermines the person's dignity and causes resentment. Unemployment further puts the person at risk of social exclusion, making her irrelevant in the eyes of others, preventing her from feeling useful in the eyes of society and lowering her self-esteem. Education and employment should be


given absolute priority in all actions implemented by governments in favour of people with disability. These are two key factors in the process of social integration, the pillars that support equality and dignity, the necessary bases to truly exercise freedom. C) Mainstreaming is a stepping stone to integration that does not exclude specialised action. In the world's most developed countries, social intervention in the field of disability has on many occasions been based on segregated attention through special services. While this model may be coherent with the special requirements of specific groups and corresponds to specific aspects of disability, interventions designed to mainstream disability and provide services through the general mechanisms available to all members of society are advantageous from all standpoints. Through mainstreaming, diversity and differences can be accepted from infancy, in the classroom, in games, in transport, in personal relationships and over time, can come to be considered to be quite normal. Similarly, all the goods and services available in society should be designed to adapt to more heterogeneous needs, taking into account the differences that exist between individuals. Mainstreaming helps use economic resources more efficiently, and makes it possible to fine tune the expert services that must be maintained, providing specialised attention more effectively in areas where they are necessary. From the outset, therefore, social intervention regarding disability should include the specific focus and methodologies of mainstreaming. D) Disability has different implications depending on the social environment, and must be addressed in different ways. Sustainable development must be geared towards the incorporation of people who live in rural areas into economic and social progress. However, current economic growth is leading to high concentrations of the population in urban areas, to the detriment of economic activities in rural settings. At the same time, the priorities on the governments' social agenda tend to concentrate intervention in the urban population, leaving people in rural areas to look after themselves and to rely on their families and inter-group solidarity. Likewise, in rural zones, fewer and fewer resources are devoted to rehabilitation through healthcare, education or labour integration services. The consequence of these factors is that people with disability in rural areas are at a greater disadvantage, and their problems become more severe because of their isolation, while the opposite should be true: precisely because of the rural setting it should be easier for them to contribution to the community's life because of simpler and easier access. E) Accepting impairment as a difference will allow refocusing rehabilitation. It is necessary to revise the concept of rehabilitation to centre it on people with disability themselves. People with disability must be allowed to design their own lives, and all the participants in the process must accept that a disabled person’s impairment is merely a difference. Because it makes more efficient use of public resources, mainstreaming rehabilitation as far as possible should be the option of choice. Another important measure is to


update official standards for the classification of disability, to take into account situations that affect disability. Advances in the fields of domotics and ergonomy, will help alleviate some of the functional disadvantages that people with disability face in their daily lives and work settings. 6º EDUCATION AND EMPLOYMENT, KEY FACTORS FOR INCLUSION For people with disability, education and employment are the key factors in the process of social inclusion, the pillars of equality and dignity and the basis for real freedom.

A) For people with disability, education must be a life-long process. Participating in mainstream education and training programmes offers many advantages, provided the system has specialised resources that respond to the needs of special students. Adapting space, course materials and methodologies, and providing the teaching staff with adequate training are factors which will guarantee the success of mainstream education. As the educational systems are made universal, specialised resource centres will become more efficient in responding to the specific needs associated with different impairments. Fora on experiences and good practices which are open to all the members of the educational community can provide excellent vehicles to disseminate techniques and knowledge, and to downplay the drama that many professionals believe is associated with integrating special students into the mainstream classroom. Education, understood as a life-long learning process, takes on special meaning for people with disability. The early learning begun in childhood about handling the personal difficulties associated with the impairment when obtaining information and acquiring knowledge should continue throughout life. The Public Authorities should adapt educational processes to the special characteristics of participating students with disability. Establishing personal itineraries is a useful technique that takes into account each student’s unique rate of learning. B) It is necessary to emphasise the importance of employment. Access to employment is an excellent indicator of the success of public policies aimed at implementing the rules of non-discrimination and positive action. We know that there are many factors that make it difficult for people with disability to integrate into the labour force, and we know that discrimination is one of the major ones in all societies. While some of these factors may be objective, many others, such as prejudice, seem engrained in society and in the minds of businesspeople the world over, although there are no objective reasons that justify them. We also know that training, especially vocational training, can facilitate employment decisively, although training alone is not sufficient. If we wish to promote integration into the work force, we must eliminate discriminatory practices and barriers, and, at the same time, we must use positive action. Some examples of positive action used in different countries


include reserved employment quotas, tax incentives for hiring people with disability and aid in adapting jobs and the work place for people with disability. C) Access to the labour market has a decisive impact on the process of integration. While official employment services have an essential role to play in helping people find jobs, the specific needs of people with disability who are approaching the labour market are often not met in unspecialised offices. Public Authorities should, therefore, fund specialised placement services for people with disability. Proven techniques indicate that often people with disability require placement services that begin with a diagnosis of their technical and social skills followed by detailed professional guidance and a customised vocational itinerary for each applicant that includes an ad hoc training programme. Many of these itineraries will have to begin with pretraining activities to teach basic social skills. Teaching active job searching techniques has also been extremely helpful. D) Mainstream employment must be the paradigm, protected employment an alternative. The debate over mainstream versus protected employment for people with disability is a false one. The ultimate goal of all integration policies is the fullest integration possible of people with disability into all aspects of society. Under this premise, efforts must be concentrated on integrating people with disability into the mainstream labour market. However, not all people with disability are able to meet the demands of the mainstream labour market, and this is a reality that must be accepted. Another is that many people with disability have not been able to obtain the professional experience required in the job description. To remedy this situation, governments should support protected employment schemes to provide professional experience that can ultimately help the person with disability enter mainstream employment. Protected employment offers a good formula to help people with disability overcome some of the very real difficulties they encounter when they try to join the mainstream labour market. In the framework of protected employment, the Public Authorities should test and regulate innovative formulae that are adapted to the social and labour circumstances of each individual country. Today new ways of organising work and production are being tested and these may provide opportunities for people with disability to enter mainstream employment. New mechanisms like occupational enclaves or sheltered employment programmes are good options as long as they respect the autonomy of each company's organisation and do not distort their rules of operation. Tele-working is another formula that appears to offer good perspectives for integration into the mainstream work force, and is a promising alternative for people with mobility problems or who live in rural areas. The Public Authorities must guarantee real compliance with the regulations intended to promote employment. Quota systems that reserve a certain percentage of jobs for people with disability in both the public and private sectors have been seen to be effective, even though the level of real compliance continues to be low in all countries. The Public Authorities should


work hard to enforce compliance with these regulations and to strengthen their formal aspects. When for well-founded reasons an organisation is unable to fulfill its compulsory quota, it should have recourse to substitute systems to support the integration of people with disability in the labour force. These alternatives can include purchasing goods from protected employment centers, or financing public initiatives that promote the employment of people with disability. Tax incentives for companies employing people with disability help encourage placement, while they also make adapting the work place to the specific needs of the disabled employee seem less onerous. Companies operating in the Social Economy may become partners with the Public Authorities to spearhead initiatives to incorporate people with disability into the mainstream labour force. E) Not just any job is valid; people with disability must gain access to quality employment. We have extensively discussed how unemployment acerbates the risk of social exclusion, particularly for people with disability, and how their already precarious situation is compounded by many other factors that affect the quality of the employment secured. Poor quality jobs are generally occupied by the weakest social echelons, because of their lack of qualifications and because poorly qualified workers feel they must accept any job they are offered. Corporations that assume their social responsibility should include in their codes of conduct initiatives to hire people with disability and to help them advance through their human resources systems. 7º UNIVERSAL ACCESS AND DESIGN FOR ALL ARE IMPERATIVE Universal access and design for all are prerequisites before undertaking any integration process. The implementation of these new concepts is intended to guarantee that people with disability have access to the basic functions of everyday life: moving about, communicating and using all the goods and services available to all consumers. The opportunities created by the new information and communications technologies should promote integration, ensuring that the digital breach does not become a new factor of discrimination. A) The concept of accessibility comes into its own in the context of disability. Accessibility is the basic requirement that precedes any integration process. Accessibility means that each and every one of the services developed in society should, above all other considerations, be accessible to all, and particularly to people with disability. Traditionally efforts have centered on eliminating physical barriers. New concepts, however, have espoused a more ambitious scope and are proactive in promoting accessibility. In a society that is more and more open and globalised, and that is daily more immersed in the use of communications technologies, the obstacles that bar participation are not only physical. In today's world there are often huge barriers to communications and barriers that prevent people from establishing relationships with each other. Accessibility is a global issue that transcends the


specific concerns of people with disability. The new thrust of the organisations of people with disability is, therefore, aimed at promoting the new concepts of universal access and design for all. The disability movement is pursuing global accessibility in daily life to guarantee the basic functions that will allow people with disability to move about freely, locate objects, pick them up, use them and communicate with others. People with disability are also advocating design for all which, when applied to the production of goods and services confers competitive advantages and broadens the potential markets of the companies that have the vision and courage to introduce these concepts into their strategies. Design for all can reduce the efforts and costs of having to make later adaptations of goods and services to accommodate people with disability, members of the population with low levels of mobility or people with temporary impairments resulting from old age. B) While the new information and communications technologies introduce significant opportunities, they introduce new risks as well. Thanks to today’s information technologies, we have unprecedented access to communications processes, and can acquire information and knowledge in ways and in spaces that are very different from the traditional classroom. People with disability can use these advances to enhance their training and employment options. These technologies open new vistas for social integration and active participation in society, making it possible for more people to take advantage of the social resources available. There is, however, a real danger of creating a social schism between those who have access to these opportunities and those who do not. It is crucial to implement the right measures to minimize the risks of exclusion of people with disability and other vulnerable groups, least their situation deteriorate yet again as a result of the new social stratification that will emerge through the deployment of these technologies. The Public Authorities have a decisive role to play in circumventing these risks. Access to the new information and communications technologies will transform social reality and will have a significant impact in the coming decades. However, if we do not act sensibly, and if we fail to pay attention to the less favoured segments of society, technological advances will also splinter the social balance. Digital literacy must, therefore, be placed high on the political agenda, to bring these technologies to every member of society, including people with disability. If successfully adopted, these strategies will go a long way to speeding the integration of people with disability into all of society’s social and labour structures. C) Access to leisure activities and culture is an essential part of social integration. One of the indispensable features for the full integration of people with disability is access to mainstream recreational and cultural activities. The new information and communications technologies will make a major contribution to eliminating the barriers that make these facilities largely inaccessible today. It is the responsibility of the Public Authorities to spearhead the efforts to provide universal access in these areas, and to manage these


services according to market philosophy. Sport occupies a very prominent place in today’s societies because of its connotations for both health and consumption. The impact of sport in the media has turned it into one of the greatest information products ever consumed. People with disability must have access to sport, first of all for health reasons. Secondly, because of the publicity sport attracts, the participation of people with disability in high profile events will go a long way to reinforcing a positive image of disability. The Para-Olympic Games are a case in point. Not only do they provide people with disability the opportunity to participate in high level sporting events, they are also a showcase in the mass media to highlight positive images of people who are different, yet who overcome all manner of difficulties and disadvantages to achieve their goals. D) People with disability are the victims of discrimination when they acquire products that are key to their autonomy. People with disability often have to acquire products and services as a result of their impairments and dysfunctions and which, paradoxically, are generally very expensive. These range from medicine to prosthetic limbs, articles adapted for daily life, adapted vehicles, appropriate foods, and a whole series of other products and services that add up to a stiff surcharge over the price paid by other consumers to enjoy standard goods and services. Numerous formulae, such as organizing consumer cooperatives and purchasing centres, have been assayed to help alleviate the burden of these additional expenses. Many countries have adopted cost-sharing schemes, lowered sales taxes on these items or provided other fiscal incentives in an effort to make these acquisitions less onerous. Public Authorities should be aware that disability creates a specific market that should be appropriately regulated. 8º HEALTHCARE, SOCIAL SECURITY AND SOCIAL ESSENTIAL FOR THE FULL DEVELOPMENT OF RIGHTS SERVICES,

For people with disability to fully exercise their social and economic rights, they must be included in mainstream healthcare systems, and social security and social services. Key references in this area include the transfer of technological and scientific knowledge, the provision of specific care and services through mainstream insurance systems and the inclusion of people with disability in new protection schemes as dependents. A) The healthcare required by people with disability should be geared towards prevention, rehabilitation and attention to the chronic nature of the impairment. Inequalities in the way healthcare resources are distributed in developed countries and in underdeveloped ones highlight one of the major imbalances in human development and dignity. What is more, many countries fail to use their healthcare networks to the full and often manage their systems inefficiently. All health plans, but especially those focused on the prevention of impairment and rehabilitation, should incorporate mechanisms to


transfer technologies and scientific progress to the weaker societies. All advances made in biogenetics should be shared, as should technologies in rehabilitation, within the frameworks of cooperation programmes. The general increase in life expectancy and overall ageing of the population is bringing with it levels of disability to new social echelons. Healthcare for the elderly should include attention to the dysfunctions which occur with age and ensure the rehabilitation services to palliate or correct them. Equal attention should be given to health at work. The lack of control over working conditions and procedures on some jobs is the direct cause of accidents and professional illnesses, some of which leave workers with permanent disabilities. The Public Authorities must implement and enforce prevention and safety measures at work, a responsibility that must be shared by the companies and all the social agents involved. B) Social security systems do not take into account the special characteristics of assuring people with disability. Because insurance systems vary widely from one country to another, it is difficult to make a general analysis of healthcare protection throughout the world or formulate proposals for the future. Generally speaking, however, in systems financed through workers’ contributions, standardised protection is prescribed for workrelated incapacity, the recovery and rehabilitation phase and selective employment. In universal systems, subsystems covering the specific needs of the disabled population often supplement the coverage provided through workers’ contributions. The evolution of social security systems towards private or mixed insurance models places people with disability who are unemployed at a great disadvantage, and makes them totally dependent on the minimum subsidies provided in each country. The difficulties people with disability encounter in joining the active labour force, in generating an income and in assuring their future seriously affect the conditions in which they can obtain protection for the present or for the future. The option of taking disability out of the contributory system further places people with disability in the slow lane for protection and participation in social security programmes. Without denying the need for special disability pension schemes, the Public Authorities should test different formulae that combine the contributions disabled workers make to Social Security plans with non-contributory schemes to compensate for the fact that the employment patterns of disabled workers are usually shorter in duration and more irregular than those of non-disabled workers. The most developed countries are implementing insurance models that cover many of the needs associated with disability and old age. C) In most countries, social services are separate from the social security system. As the gap between rich and poor countries widens, a constant that remains palpable throughout the world is the close link between disability, poverty and social exclusion. To attend to this reality, social services are organised in innumerable ways, each with its own financial structure. These differences notwithstanding, everywhere in the world, any debate about


social services for people with disability should be placed within the broader context of social and economic rights. Social services should support the priorities of healthcare, training and employment, as they play a decisive role in helping people with disability make the most of opportunities for full integration. Public services should dovetail with the support the person with disability receives from her family, and channels for cooperation should be built for this purpose. Incentives, such as tax reductions, should also be implemented to motivate third parties to play a more active role. 9º DISABILITY MUST CONTINUE TO BE AN OPEN SUBJECT ON THE INTERNATIONAL AGENDA The international community must share scientific knowledge and advances regarding disability. In the face of the erosion of social protection on the coattails of the new world scenario, disability must be kept high on the international agenda. A) The international community must share scientific and technical advances and know-how regarding disability. The acceptance of the inexorable existence of disability, no matter how prosperous a society is and no matter how carefully a community controls risks to prevent it does not relieve society of its responsibility. We are responsible towards the future generations and towards anyone who is potentially subject to the risk of becoming disabled and who will have to learn to live with disability. Technology is providing us with heretofore unheard of scientific capabilities. Research, especially in biogenetics, holds out great hope even for the immediate future. The development of the healthcare sciences holds great potential to prevent disability and to facilitate rehabilitation. Society must redouble scientific and technical efforts to elucidate the risks that affect health, and diminish and eliminate them. With the conviction that disadvantages can be modified, the international community has the obligation to transfer and share all knowledge and technology that will reduce the occurrence of impairments and facilitate rehabilitation. B) The new world scenarios are eroding social protection and opening up large grey areas in the social structure. Because control over markets and national economies has shifted away from the international community and individual states, large grey areas have emerged whose impact on social protection is already being felt. One of the immediate risks has been the surge in precarious employment and the re-appearance of unfair employment practices that we believed had been relegated to the past. We must strive to make competitiveness compatible with social cohesion, safeguarding the progress that has been made, and reintroducing security as a value which the social agents and Public Authorities owe all members of society, particularly the weakest. C) Disability issues must be kept open on the international agenda. The


vulnerability of people with disability compels the international community to reflect collectively on how to reinforce the formal and practical aspects that will allow the full exercise of their basic rights. These efforts should lead to the adoption of action plans on a global level, followed by their systematic and periodic revision to keep them ever relevant in the context of rapid social change. The international community should plan its actions carefully in a spirit of cooperation, and keep the issues that affect people with disability on the agenda on a worldwide level. It must promote the principles and values needed to sustain the action programmes it coordinates after agreeing on priorities together with the national governments. The disadvantages that people with disability face in many parts of the world can only be overcome through the concerted action of the international community. 2.3. Some proposals for positive action

As a necessary complement to the consequences of the practical application of the broad range of principles and criteria exposed above, here follows the difficult task of translating these things into positive action. These actions are no more than a selection from the myriad proposals that can formulated in response to the issues discussed in this Report. We have restricted ourselves, then, to only the most essential fields and topics where actions and programmes need to be devised, because these are the areas that have the most direct and immediate impact on people with disability. PROPOSALS FOR ACTION

1. Legal protection 1.1.) In order to achieve the imperative objective of ensuring equal opportunities and the dignity of people with disability, priority must be given these aspects through the legal protection granted by human rights, and more specifically by the fundamental rights that extend to all people. 1.2.) A specific United Nations Convention on Disability is extremely important. This Convention must examine all the conceptual, legal and political aspects required for people with disability to fully enjoy their human rights, and their civil, political, social, economic and cultural rights. The NGOs representing people with disability must be recognised as valid interlocutors when defending, representing and supervising the interests of people with disability. A Convention accompanied with the necessary instruments to monitor and supervise the implementation of its content and to enforce compliance would represent a qualitative leap forwards in defending the rights of people with disability. It would serve as a centre of reference for national and regional legislation and policies. A Convention of this nature would usher in the era of


visibility and full participation of people with disability in their respective societies. 1.3.) Every country’s Constitution should include a specific section that recognises and protects people with disability in the broadest sense. This will establish a binding principle for the Public Authorities and provide the framework for the development of specialised legislation. All constitutional systems should include not only the principle of formal equality, but also the principle of real and effective equality. 1.4.) Likewise, national Constitutions should protect and legitimise the participation of all their citizens and organisations created in the heart of Civil Society, to provide a constitutional framework for social movements to cooperate legitimately, and not only from a social standpoint, in the processes of drawing up social policies. 1.5.) Legal provisions should clearly include the principle of non-discrimination on the grounds of disability, but they should also clearly include the principle of positive action or favourable discrimination to re-balance the initial and radical inequality suffered by persons with disability. This will place people with disability at the starting line under the principle of real equality of opportunities. 1.6.) Every legal provision on the matter should adequately coordinate the principle of mainstreaming with specific legislation to attend the special needs of people with disability which are not covered by the general social services systems. 1.7.) All declarations, regulations and mechanisms that provide legal protection for people with disability should be accompanied by efficient procedures and mechanisms to permit the material, real and effective exercise of their recognised rights. To go beyond making mere rhetorical declarations of good will, they should include coherent measures and control mechanisms to ensure effective compliance with all legal provisions. 2. Education 2.1.) The principle of integration and mainstream education for people with disability should be legally established so that students with special needs as a result of disabilities can participate fully and preferentially in the mainstream educational system. This does not mean that other forms of education for those students who, due to special circumstances, are unable to participate in mainstream education should be eliminated. When the principle of integration in education is effectively established and applied, special education centres, when they are necessary, should be reoriented towards formulae that promote mainstream education.


2.2.) The principle of non-discrimination must be established to ensure the right to access to education of people with disability, first of all, and to guarantee their right to pursue the education of their choice and exercise their academic rights. 2.3.) The educational environment should be conceived, planned and structured with the criteria of universal access and design for all, to create a barrier-free environment. The educational system should, likewise, adapt curricula to meet the specific needs of students with disability whenever necessary. 2.4.) Programmes for the early detection of the special educational needs associated with disability must be established, and the educational system must be able to respond immediately to these requirements once they have been detected. 2.5.) The educational system should ensure free and compulsory education for people with disability. Likewise, the parents and/or legal representatives of students with disabilities, or the students themselves, when appropriate, must be able to choose the educational model and the kind of education they want to receive. 2.6.) Special training programmes must be set up for all the personnel in the educational system (teachers, psychologists, support personnel and other professionals) who take part in the educational process of people with disability. 2.7.) All of the new technologies and tools provided by the information society should be used to facilitate mainstreaming students with disability. Special attention should be given to distance learning options. Special measures are needed to make sure that people with disability gain digital literacy. 2.8.) The educational authorities should grant people with disability favourable treatment in the programmes, study plans and general grants, aid and support schemes available to other members of society. Alternatively, specific grants or support programmes should be established for students with disability to help palliate some of the disadvantages they face with regard to equal opportunities. 2.9.) The educational authorities need to implement positive action and support schemes to compensate for the disadvantages suffered by people with disability, to help them gain access to educational programmes and to successfully complete them. These measures should be used to guarantee nondiscrimination in terms of access, and as ways of helping disabled students complete their higher education, where they are clearly under-represented. 2.10.) It would be extremely useful for the UNESCO and similar supranational organisations on a regional scale to approve binding international legal


instruments that guarantee education for all, which would establish the principles and criteria to be followed by all States and Authorities with regard to educational policies for people with disability. 2.11.) The authorities, the community and society as a whole should understand that the cost of promoting education among people with disability is a socially profitable investment. Education is a stepping stone to economic independence and reduces the number of dependent citizens. 2.12.) The educational system must be geared to preparing people to enter society’s productive and economic cycles. It must be designed to facilitate entry into the labour market, thus permitting the economic independence of people with disability. Other vital elements of the educational system are lifelong learning options and personalized itineraries. 2.13.) People with disability and their parents, families or legal representatives should be encouraged to form part of the governing bodies of their educational centres. 2.14.) Attention to diversity and special educational needs should be incorporated into the educational system as a criterion of quality. 2.15.) People with disability must espouse the values of personal effort and striving for excellence, as the driving forces behind socialisation through education. 3. Incorporation into the labour market

3.1.) Governments and Authorities should reverse the current ratio between active policies that encourage employment and passive policies to maintain people with disability because they are unable to join the work force and maintain themselves. Efforts should focus on promoting employment among the disabled, while at the same time maintaining and intensifying assistance to those persons who are unable to get or keep jobs. 3.2.) The legal systems of all countries should include provisions that make discrimination on the grounds of disability illegal. Since discrimination often bars access to the labour market and keeps people with disability from maintaining their jobs, legal and administrative instruments must be put in place for people with disability to use to exercise their right to equal opportunities. 3.3.) People with disability must be encouraged to aspire to take an active part of the productive system as a step towards full social integration. These processes must be seen as a route towards personal and social fulfillment. 3.4.) Public campaigns should make society aware of the labour potential of


people with disability. Employers, people with disability themselves and their families must all shed the prejudices and stereotypes that still hold them back from achieving their potential. 3.5.) Positive action must be deployed to promote employment for people with disability. Measures like special support programmes for disabled workers, aid schemes, tax incentives and reductions, etc., should be used to create new ways to integrate this collective into the labour market. Different forms of employment must be explored, from mainstream employment, sheltered workshops, self-employment, Social Economy formulae, public employment, etc. 3.6.) It is crucial for the social agents to take a more active role in promoting employment for people with disability. They are the ideal interlocutors to supervise compliance with the legal provisions that protect the rights of people with disability and, because of their longstanding experience in similar situations, can be particularly effective at the bargaining table. 3.7.) Public Administrations must set the right example in their procurement practices by acquiring goods and services only from companies that meet their legal quotas in hiring disabled workers and in integrating them into the workplace. 3.8.) The workplace must be designed and built along the principles of universal access and design for all, in order to accommodate all workers. 3.9.) Occupational observatories should be established to detect new sources of employment with the potential for integrating people with disability. 3.10.) Lifelong learning should be promoted among disabled workers, with special emphasis on acquiring the skills necessary to be competent in the Information Society. Just like everyone else, disabled workers need to keep abreast of developments to keep their jobs and move up the ladder in their organisations. 3.11.) The Third Sector, both through its social branch (NGOs) and its business arm (the Social Economy), should give priority to the objective of integrating people with disability into the work force. This sector has an enormous potential and real capacity to create and maintain employment even in times of economic recession. 4. Social protection systems

4.1.) Social protection systems are a fundamental element in improving the living conditions and quality of life of people with disability. They must provide adequate coverage for the contingencies which may affect people with disability throughout their lives, along with a network of social and healthcare


services aimed at promoting the independence of people with disability and at ensuring healthcare and support whenever it is required. 4.2.) The different Social Security systems, based either on workers’ contributions or on universal coverage, should take into account the special requirements of people with disability and the characteristics of the coverage they require. Measures should be taken to safeguard public insurance systems and to keep them from evolving into private or mixed schemes that will place the unemployed disabled population at a disadvantage and make them totally dependent on minimum subsidies, when they exist at all. 4.3.) The Public Authorities should test formulae that combine insurance financed by workers’ contributions with coverage from special non-contributory funds to take into account the characteristics of the more irregular and usually shorter working life of the average disabled worker. Because it is so hard for people with disability to access and maintain employment, they have great difficulty in generating enough income to allow them to ensure against the future. If poverty generates disability, it is also true that unemployment generates poverty and excludes people with disability from the social protection system based on either public or private insurance. 4.4.) Special social services should be developed to respond to situations of dependency that can arise as a result of age or serious illness. People with disability should receive priority treatment in these models. 4.5.) Social service systems vary considerably throughout the world, and their precarious financing is one of the factors that explain the poverty and exclusion that plague most people with disability in less developed countries. However, social services have a vital role to play in articulating the social and economic rights of people with disability throughout the world. They serve to complement and reinforce healthcare, training and employment services and promote opportunities for integration. 4.6.) Cooperation between the social services, the families of people with disability and volunteer workers should be encouraged as a formula to provide better care for people with disability. 5. Healthcare 5.1.) Each country must enact legislation that establishes the right of people with disability to adequate healthcare. The health authorities must guarantee healthcare and medical attention for these members of society. 5.2.) It is necessary to assign more resources to cover health needs in underdeveloped countries. The great difference in resources devoted to health in these countries and in the developed world is one of the principal factors in the imbalance in human development. Healthcare investments in disability


centre on prevention, rehabilitation and attention to chronic illnesses. 5.3.) Cooperation programmes must be established to transfer technologies to the less developed countries so that they can apply the same advances in prevention and rehabilitation as the rest of the world. Likewise, advances in the field of biogenetics should be shared. 5.4.) The Public Authorities and the social agents must work together in the field of occupational health. The conditions under which certain jobs are carried out should be improved to prevent accidents and illnesses which can bring about disability. 6. Technological change and scientific and medical advances 6.1.) The realities facing people with disability must be considered a priority in public policies concerning innovation and new technologies. 6.2.) Legal standards and administrative practices must be put in place to ensure the incorporation of the concepts of universal access and design for all in the fields of innovation, aid and support technologies and the tools of the information society. 6.3.) Each country should include in its legislation norms prohibiting Public Authorities and Administrations from acquiring products, services and tools based on the new information and communications technologies that do not incorporate the principles of universal access and design for all. Likewise, aids, subsidies and incentives should not be awarded to private operators which do not comply with the regulations concerning the accessibility to their goods and services. 6.4.) Programmes that promote digital literacy among people with disability must be put in place. 6.5.) Centres of excellence that study the interface between disability and the new technologies would serve as points of reference for the authorities and the private sector alike. They would provide a good vehicle to disseminate good practices. 6.6.) The medical model of intervention should be progressively substituted for the social model which takes into account the person and his or her environment and which transfers the focus of attention from impairments to the conditions of the environment where people with disability live. 6.7.) Attention must be paid to the new horizons being opened by genetics, without losing sight of the concomitant threats and opportunities. Independently of medical advances, we must never forget that the special characteristics of people with disability deserve the same respect as any other


human difference, independently of a person’s genetic characteristics. 7. Leisure, culture and sport 7.1.) People with disability must have equal access to leisure activities and culture. The multiple barriers that prevent them from enjoying recreational activities must be eliminated, and environments where sports and cultural products are consumed must be accessible. 7.2.) People with disability must be encouraged to take up sport as a way of improving not only their health, but their self-esteem. The media should use sporting events for people with disability to project a positive image of the collective that would reinforce the incorporation of disability into mainstream society. 7.3.) Support of the International Para-Olympic movement and the incorporation of these games into the general framework of the Olympic Games would go a long way to providing a worldwide example of what people with disability are capable of doing, thanks to the widespread media coverage they would receive. 8. Community life and participation 8.1.) The principle of Civil Dialogue must be incorporated into the legislation of every country in the world. Civil Dialogue provides the channel to consult the organisations for people with disability before establishing public policies that will directly or indirectly affect them; it provides the vehicle to make their voices heard when drawing up proposals and decisions in the field of disability, and when executing, monitoring and evaluating the programmes implemented. To this end, platforms must be created to articulate the dialogue between the Public Authorities and the organisations that represent people with disability on equal footing on all matters concerning public policy that affects this collective. Likewise, it is important for the organisations that represent people with disability to be legally constituted so that they can intervene legitimately in protecting the rights of their constituents in the face of violations. 8.2.) The best way to guarantee participation is to strengthen the unity of the Disability Movement, by forming platforms on a continental, state, regional and local scale to speak with a single voice to defend the rights of disabled citizens. These platforms should serve as the Movement’s valid spokespersons before the Public Authorities and Civil Society. 8.3.) The topic of disability should be included horizontally in each and every public policy that directly or indirectly affects people with disability. Independently of this measure, specific policies aimed at alleviating or eliminating the serious disadvantages facing people with disability will also


have to be established. 8.4.) The organisation of a “World Disability Forum” as a plural umbrella platform to represent and defend people with disability on a global level would represent an important step forward. This Forum would represent people with all manner of disabilities and would group all the different types of associations in the disability sector to provide a single voice for people with disability the world over. The Forum would be able to speak clearly and with rigour of the issues surrounding disability and present a shared strategic vision of the problems and solutions formulated by people with disability. It would be the valid interlocutor of the various international bodies and authorities with competence in matters of disability. 8.5.) It is important to strengthen ties between the Disability Movement and other social movements to reinforce citizen participation in constructing Civil Society. 9. Information on disabilities 9.1.) As people with disability represent 10% of the world’s population, better statistical knowledge of the reality of disability would make it easier to plan and develop the right policies and programmes to meet their real social needs. It is very important for disability to be incorporated into the United Nation’s indicators in its Index of Human Development; it is also important for other supranational organisations and the different countries to study the phenomenon with rigorous statistical systems and social indicators. 9.2.) The low level of participation of people with disability in society makes them virtually invisible, and this has given rise to many of the prejudices and misunderstandings which, in turn, further bar them from the activities that foster social integration and personal development. The realities of disabilities, including the potential of people with disability, the problems they must overcome and the actions proposed to respond to their needs should be widely publicised. Understanding these issues is essential if we are to advance towards a society capable of accepting and prizing the differences which contribute to its wealth. 3. RECOGNISING HUMAN DIVERSITY IS THE KEY TO A MORE HUMANE FUTURE The proposals laid down above must be considered within a context broader than the mere day to day problems of disability and social exclusion. They endow us with the keys and levers to unlock a situation where people with disability, and many others, are the victims of social exclusion in function of their ability to integrate more or less successfully in society’s production chain. Today’s society values a person on the basis of his economic usefulness, with scant regard for his personal dignity, expectations or potential to make a


genuine contribution to human development. This appreciation contrasts sharply with the technical capacity we have developed, which, if applied correctly, would allow us to successfully manage the complex situations we face today, distribute resources fairly and find solutions that would prevent social exclusion. Progress towards quality in human life will be impossible if it does not include all human beings, and if it does not uphold the unalienable rights of each and every member of society. It is only by pursuing these goals that civilisations can consider themselves the depositaries of the best of humankind, which is none other than the fight for the recognition of the equality of all human beings, whatever their capacities or unique features. The intent of the proposals made on these pages is to inspire an authentic cultural change, one that will kindle in the hearts of all human beings the desire to recognise themselves in each other and treat others with the dignity they merit as human being, rather than in terms of their function in the production chain. But this cultural change will fall short of its goals if it safeguards only the interests of people with disability, responding perhaps more to feelings of solidarity or even compassion. It must extend to the recognition of human diversity and the different conditions and life experiences that characterize every human being. If it reached only the area of disability, and even if the inclusion policies and capacitating programmes it were to inspire helped people with disability integrate into mainstream social, economic and cultural life, there would still be discrimination against other people and groups. And these new marginal groups also have the same rights as anyone else and, through their diversity and differences, have a great deal to offer the cultural, social and economic spheres of a society which cannot afford to waste the resources that reside in all human beings. The resources and potential of each one of us are articulated through the value of human dignity, and the capacity to relate, give and share that we all have, no matter how bleak and desperate our existence may seem. Therefore, the proposals laid down above have not been made only to champion people with disability in their claim to full social inclusion. Nor do they only seek to keep from squandering the opportunities, ideas, hopes and desires that all people with disability harbour in their hearts, and yearn to contribute to building a future founded on solidarity for all humankind. They have been written with the knowledge that the future can only be truly humane when personal differences no longer lead to discrimination and exclusion, when all people feel and live as equals and when governments, corporations and institutions ratify this equality in their regulations, procedures and through their actions. Hence, beyond the references and recommendations for a more humane future for people with disability, this Report, more than anything else, wishes to be a call to embrace human diversity. It wishes to vindicate the recognition and defence of human diversity as an integral part of our common heritage. This human heritage is forged stronger every time people treat others simply as


people, and whenever we endeavour to prevent personal circumstances from ever constituting an impassable barrier to social inclusion. This heritage will come into its own when we learn to live according to the principle of solidarity with others.



African Rehabilitation Institute: Statement presented by the African Rehabilitation Institute on the occasion of the International Day of Disabled Persons - 3 December 1996 African Women Network: Memorandum of understanding: The identity of the African Network of Women with Disabilities, and Plan of Action. Johannesburg, November 30, 2001 Allan, H. and Berkovitz, M.: Las nuevas tecnologías y el acceso al mercado de trabajo de las personas discapacitadas. Madrid, Ministerio de Asuntos Sociales, 1992. Alzaga, Oscar; López Guerra, Luis; Lorenzo García, Rafael et alii: La administración de justicia y las personas con discapacidad. Madrid, Escuela Libre Editorial, 2000. Asian Pacific Decade of Disabled Persons: Asian and Pacific Decade of Disabled Persons: mid-point ~ country perspectives, [ST/ESCAP/2014] 1999 Asian Pacific Decade of Disabled Persons: Hidden Sisters: Women and Girls with Disabilities in the Asian and Pacific Region, [ST/ESCAP/1548] 1995 Asian Pacific Decade of Disabled Persons: Legislation on Equal Opportunities and Full Participation in Development for Disabled Persons: Examples from the ESCAP Region, [ST/ESCAP/1651] 1997. Asian Pacific Decade of Disabled Persons: Self-Help Organizations of Disabled Persons, [ST/ESCAP/1087] 1991 Bales, Kevin: Disposable people: new slavery in the global economy. Berkeley, University of California Press, 1999. Berger, Peter L.: The limits of social cohesion: conflict and understanding in a pluralistic society Bertelsmann Stiftung, Gütersloh, 1997 Bickenbach, Jerome E. "Physical Disability and Equality Rights" (with David Lepofsky), in A. Bayefsky and M. Eberts (eds.): Equality Rights and The Canadian Charter of Rights and Freedoms, Carswells, 1985, 323-380 Bickenbach, Jerome E.: "La révision de la classification internationale des handicapeés déficiences, incapacités, désavantages (CIH)" (avec T. Bedirhan Üstün et al.) (1998) 24 Cahiers Psychiatriques 209-216 Bickenbach, Jerome E.: "Voluntary Disabilities and Everyday Illnesses" in Marcia Rioux and Michael Bach (eds.): Disability is not the Measles: New Research Paradigms in Disability, The Roeher Institute, Toronto, 1994, 109-126 Bickenbach, Jerome E: "Consequences of Disability for Economic Self-Sufficiency" in Mary Ann McColl and Jerome E. Bickenbach (eds.): Introduction to Disability, W.B. Saunders, London, 1998, 158-166 Bickenbach, Jerome E: "Disability and Equality", in W. Cragg and C. Koggel (eds.): Contemporary Moral Issues Fourth Edition, McGraw Hill, Toronto, 1997 Bickenbach, Jerome E: "Disability and Life-ending Decisions", in Margaret Battin, Rosamond Rhodes and Anita Silvers (eds.): Considering Physician Assisted Suicide, Routledge, New York, 1998, 123-32 Bickenbach, Jerome E: Introduction to Disability, edited by Mary Ann McColl and Jerome E. Bickenbach,


W.B. Saunders, London, 1998 Bickenbach, Jerome E: Physical Disability and Social Policy, The University of Toronto Press, 1993 Cisternas, Mª Soledad: Communication to the Conference "Disability Studies: A Global Perspective" (Washington D.C. Octubre 2000), for the journal "ATREVETE", Fonadis (Chile). Cisternas, Mª Soledad: “El Censo 2002 ¿Una Medición Confiable de la Variable Discapacidad?”. El Portaliano Diario. Universidad Diego Portales. Santiago de Chile. Cisternas, Mª Soledad: “La discapacidad en Chile: Análisis para un proceso integrador.” Revista de Derecho de la Universidad Austral de Chile. Vol. VIII, December, 1997. Cisternas, Mª Soledad: “La Discapacidad en el Sistema Interamericano: Un desafío para Chile”. La Semana Jurídica, September 2001. Coleridge, Peter: Disability, Liberation, and Development, Oxford, Oxfam, 1993 Dudzik, P., Elwan A. and Metts, R. L.: Disability in Latin America and the Caribbean: A First Review of Policy, Statistics, and the Potential For Inclusionary Policies and Strategies. Prepared for the InterAmerican Development Bank. 2001. European Disability Forum: European Manifesto on the Information Society and Disabled People, Brussels, 1999. European Disability Forum: Manifesto of Disabled Women in Europe. Brussels, 1997. European Disability Forum: Report on Violence and Discrimination against Disabled People. Brussels, 1999. Eurostat: Eurobarometer nº 54.2 of 2001 FAO: Special, Empowering the rural disabled in Asia and the Pacific. Introduction by Soetatwo Hadiwigeno FAO Assistant Director General and Regional Representative for Asia and the Pacific Fernández de Villalta, J.M.: "Factores relevantes del teletrabajo aplicado a las personas con discapacidad". Fundesco. Boletín de la Fundación para el desarrollo de la función social de las comunicaciones, nº 164, 1995; pp. 13-14. Garcia Viso, M. and Puig de La Bellacasa, R. (Eds.): Empleo, discapacidad e innovación tecnológica. El horizonte laboral de las personas con discapacidad y las Nuevas Tecnologías. Madrid, FUNDESCO, 1989. Giarini, Orio & Liedtke, Patrick: Wie Wir Arbeiten Werden. Hoffmann und Campe, Hamburg, 1998 González Amuchastegui, J., Feliu Rey, M.I., Ruiz-Giménez, J., Lorenzo García, Rafael et alii: Derechos de las minorías y de los grupos diferenciados. Madrid, Escuela Libre Editorial, 1997. González, F.: "Iniciativas europeas sobre telecomunicaciones y discapacidad". Fundesco. Boletín de la Fundación para el desarrollo de la función social de las telecomunicaciones, nº 157, 1994; pp. 12-13. Greek National Confederation of Disabled People (coord.): Disability and Social Exclusion in the European Union. Time for change, tools for change. Final study report. European Disability Forum, Brussels, 2002. Instituto Nacional de Estadística (Spain): Encuesta sobre Discapacidades, Deficiencias y Estado de Salud, 1999. International Labour Office (ILO), United Nations Educational Scientific and Cultural Organization


(UNESCO), World Health Organization (WHO): Multisectoral Collaboration for the Equalization of Opportunities for People with Disabilities. 1996. Jiménez Fernández, Adolfo, Lorenzo García, Rafael, Jacob Sánchez, Francisco. M. and Cabra de Luna, Miguel Ángel: La protección de la Seguridad Social por Incapacidad Permanente. Madrid, Escuela Libre Editorial, 1999. Jiménez Lara, Antonio and Huete García, Agustín: Epidemiología de la Discapacidad. Madrid, Real Patronato sobre Discapacidad, 2002 Jiménez Lara, Antonio and Huete García, Agustín: La Discapacidad en Cifras. Madrid, IMSERSO, 2002 Jiménez Lara, Antonio and Huete García, Agustín: La discriminación por motivos de discapacidad. Análisis de las respuestas recibidas al cuestionario sobre discriminación por motivos de discapacidad promovido por el CERMI Estatal. Madrid, CERMI, 2002 López González, M.: "Nuevas tecnologías aplicadas a la educación especial", in Molina, S. (dir.): Bases psicopedagógicas de la educación especial. Alcoy, Marfil, 1994. Lorenzo García, Rafael and Muñoz Machado, Santiago. (Directors): Código Europeo de las Minusvalías. Madrid, Escuela Libre Editorial, 1996. Lorenzo García, Rafael, Pimentel, Manuel, et alii: La situación del empleo de las personas con discapacidad en España, propuestas para su reactivación. Madrid, Escuela Libre Editorial, 1998. Lorenzo García, Rafael, Rupérez Antón, Esperanza and San Miguel Canovas, Fernando: La ONCE. Análisis de un modelo organizativo singular. Madrid, Escuela Libre Editorial, 1990. Lorenzo García, Rafael: "Deporte y Discapacidad" Intervention in the Summer Course of the Universidad Complutense on Deporte and Discapacidad. San Lorenzo de El Escorial, August 1994. Lorenzo García, Rafael: "Discapacidad y Pensiones hacia el año 2000". Conference pronounced in the Congreso Internacional de PREDIF. Madrid, June 1997. Lorenzo García, Rafael: "Discapacitados ante la crisis". Published in the “Tribune” of El Mundo. Madrid, December 1993. Lorenzo García, Rafael: "El Teletrabajo como potenciador de las capacidades de las personas con problemas de movilidad". Conference pronounced in the Forum-Debate Economics. March 1996 Lorenzo García, Rafael: "El Cambio Necesario en la Política de Formación y Empleo para Minusválidos" Conference pronounced in the Club Siglo XXI, Madrid, March 1994. Lorenzo García, Rafael: "El Plan de Medidas Urgentes para la Promoción del Empleo de las Personas con Discapacidad". Conference pronounced in the Jornadas de Personas con Minusvalías organized by the Diputación Foral de Guipúzcoa. San Sebastián, February 1997. Lorenzo García, Rafael: "La ONCE en la Vanguardia de la Economía Social". ABC Diario de Economía. Madrid, December 1995 Lorenzo García, Rafael: "La ONCE: Una experiencia singular de organización y financiación de servicios sociales y creación de empleo para deficientes visuales a través del juego" Conference pronounced in the UNESCO Headquarters building, París, September 1987. Lorenzo García, Rafael: "La Organización Nacional de Ciegos Españoles: Análisis Socio Empresarial de una experiencia singular". Conference pronounced in the V Conferencia Europea de la Economía Social, Sevilla, October 1995. Lorenzo García, Rafael: "La realidad socio-laboral de los trabajadores con minusvalías". Ponencia en las Jornadas sobre Delitos contra los Derechos de los Trabajadores, organizadas por el Ministerio del Interior. Madrid, abril de 1997. Lorenzo García, Rafael: "Las Minorías y la Información Periodística" Conference pronounced in the course Ética y Democracia, Casa de América, Madrid, June 1997. Published in Alicia Fraerman (ed.): El Gran Desafío. La Etica y el Compromiso Social del Periodismo en la Era Global. Editorial Comunica, Col.


Utopos. Madrid, 1998. Lorenzo García, Rafael: "Las Políticas de Integración de las Personas Discapacitadas” Conference pronounced in the Organización Iberoamericana de Seguridad Social (OISS) Headquarters building. Madrid, May 1995. Lorenzo García, Rafael: "Una experiencia de atención integral al discapacitado: La ONCE" Conference pronounced in the Seminary on Políticas de Integración de Personas con Discapacidad, organized by the Organización Iberoamericana de la Seguridad Social (OISS). Montevideo, May 1997. Lorenzo García, Rafael: “Diversidad e Integración Sociolaboral: El caso de las personas con discapacidad”, Inaugural Conference of the Cursos Internacionales de Verano organized by the Universidad Europea de Yuste. July 1999. Lorenzo García, Rafael: “El Plan de Reactivación del Empleo de las Personas con Discapacidad del CERMI", Conference pronounced in the I Jornadas Sectoriales de Integración Socio-Laboral de Personas con discapacidad psíquica. Barcelona, April 1996. Lorenzo García, Rafael: “Empleo y Discapacidad”, Conference pronounced in the V Master en Dirección y Gestión de los Sistemas de Seguridad Social, organized jointly by the Organización Internacional de la Seguridad Social, OISS, and the Universidad de Alcalá de Henares. July 2002. Lorenzo García, Rafael: “Integración laboral de las personas con discapacidad”, Conference pronounced in the seminary La Discapacidad en el Siglo XXI. El Plan de Acción: Una Propuesta de Futuro, organized by the Universidad Internacional Menéndez y Pelayo. Santander, September 1995. Lorenzo García, Rafael: “La e-Inclusión: Presentación del Instituto de Nuevas Tecnologías y Personas con Discapacidad”, Conference pronounced in the Jornada Debate: Acceso de los Discapacitados a la Sociedad de la Información, organized by the Fundación Bancaixa. Valencia, July 2001. Lorenzo García, Rafael: “La Integración de las Personas con Discapacidad, una Experiencia Concreta”, Conference pronounced in the Master Universitario en Dirección y Gestión de los Sistemas de Seguridad Social, organized jointly by the Organización Internacional de la Seguridad Social (OISS), and the Universidad de Alcalá de Henares. June 2001. Lorenzo García, Rafael: “La Integración de Todas las Personas en el Mundo Laboral” Conference pronounced in the meeting La Economía Social; Creando Empleo y Creando Empresas, organized by CEPES. Madrid, January 1999. Lorenzo García, Rafael: “La Integración del Discapacitado en el Mercado de Trabajo” Conference pronounced in the Colegio de Graduados Sociales de Baleares. Palma de Mallorca, November 2001. Lorenzo García, Rafael: “La Protección Jurídica de las Personas con Discapacidad en el Derecho Internacional”. Revista Parlamentaria de la Asamblea de Madrid. December 2001 Lorenzo García, Rafael: “La reactivación del empleo de las personas con discapacidad”. Conference pronounced in the presentation of the Informe sobre la Situación del Empleo de las Personas con Discapacidad. Propuestas para su Reactivación in the Consejo Económico y Social. Madrid, October 1995. Lorenzo García, Rafael: “Las Personas con Discapacidad y los Nuevos Escenarios en el Mercado Laboral”, Conference pronounced in the Foro Social Complutense: Nuevos Escenarios en el Mercado Laboral, organized by the Fundación General Universidad Complutense de Madrid. April 2001. Lorenzo García, Rafael: “Tendencias de Futuro en el Campo de las Minusvalías”, Conference pronounced in the Jornadas sobre Salud y Discapacidad organized by the Instituto Guttmann. Barcelona, June 1998. Lorenzo García, Rafael: “Tendencias y Perspectivas de la Inserción Laboral de Personas con Discapacidad en Europa”, Conference pronounced in the Congreso Internacional sobre La Capacidad de Teletrabajar organized by CEPES. Madrid, February 2001. Lorenzo García, Rafael: “Un año de esperanza para los discapacitados”. Newspaper Expansión, Madrid, February 1997. Lorenzo García, Rafael: “Bases para una nueva política de empleo para personas con discapacidad”. Economistas, nº 83, 2000. Lorenzo García, Rafael: “Competitividad, cohesión e inclusión en las sociedades abiertas”. Dirección y Progreso, nº


177. 2001. Malcolm Harper and Willi Momm: Self-employment for disabled people: Experiences from Africa and Asia; An introduction to a book. ILO. 1989. Margalit, Avishai: Decent Society. Cambridge, Mass. Harvard University Press, 1996. Matsui, Ryosuke. Employment Measures for Persons With Disabilities in Japan: Recent Developments. 1993 Matsui, Ryosuke. Recent Trends of Vocational Rehabilitation and Employment of Persons with Disabilities in Asia and the Pacific Region, 1998. McNeil, John M. 1997. Current Populations Reports. Household Economic Studies. Americans with Disabilities: 1994-95. Washington, DC, U.S. Census Bureau, August, Metts, Robert L. : Disability Issues, Trends and Recommendations for the World Bank. Febrero, 2000. Ministerio de Asuntos Sociales (Spain): Nuevas tecnologías aplicadas a la discapacidad. Madrid, Instituto Nacional de la Seguridad Social, 1995. Ministerio de Educación y Ciencia (Spain): Recursos materiales para alumnos con necesidades educativas especiales. Madrid, M.E.C. 1991. Mohn, Reinhard: Menschlichkeit Gewinnt Bertelsmann Stiftung, Gütersloh, 2000 Morán Criado, José Manuel and Jiménez Lara, Antonio: Horizons of an Information Society for All. Guidelines and Proposals for Equality of Access and Social Inclusion Policies. European Conference of New Technologies and Disability: An Open Market, Madrid, 2002. Morán Criado, José Manuel: “El futuro decente”, prologue of the Spanish edition of The Accesible Future, report of the US National Council on Disability. Madrid, Escuela Libre Editorial, 2001. Muñoz Machado, Santiago and Lorenzo García, Rafael: Documento de reflexión para la formulación de una política social de la Unión Europea en materia de minusvalías. Madrid, Escuela Libre Editorial, 1997. Muñoz Machado, Santiago, Fermoso, Julio, Lorenzo García, Rafael et alii: La integración social de los minusválidos. Madrid, Escuela Libre Editorial, 1993. Munuera Giner, F. and Prendes Espinosa, M.P.: "Informática y necesidades educativas especiales", en Anales de Pedagogía 1997. Universidad de Murcia; pp. 211-230. Munuera Giner, F.: "Telecomunicaciones y Discapacidad en Educación y Nuevas Tecnologías", in Ortega, P. and Martínez, F. (Eds): Educación y Nuevas Tecnologías. Murcia, CajaMurcia, 1994. National Council on Disability: The accessible future. NCD, Washington, DC, 2001. OECD: An Inventory of Health and Disability-Related Surveys in OECD Countries (Labour Market and Social Policy Occasional Paper No. 44). October 2000. OECD: Transforming Disability into Ability: Policies to Promote Work and Income Security for Disabled People. February 2003 Pan African Conference on the African Decade of Persons with Disabilities (1999-2009) 4-7 February 2002, UN Conference Center, Addis Ababa, Ethiopia. Peccei, Aurelio: One Hundred Pages for the Future, Pergamon Press, 1981. Peccei, Aurelio: The Human Quality, Pergamon Press (1977) Quinn, Gerard and Degener, Theresia: A Study on the Current Use and Future Potential of the UN Human Rights Instruments in the Context of Disability. 2002-01-15. Reguera, Luis: A change in outlook: from work to school. UNESCO. June 1995. Rodríguez-Porrero, M.C. and Herrera, P.T.: "Aplicaciones telemáticas para personas con


discapacidad y personas mayores", Minusval, nº 93, 1994; pp. 14-50. Silberberg, D. “Children’s Disabilities in Sub-Saharan Africa: Ghana and Zimbabwe”, Julio 1998. quoted by Ann Elwan in Poverty and Disability, a survey of the literature, December 1999, prepared for the World Bank. United Nations Development Programme: Annual Report 2001. Partnerships to Fight Poverty. UNDP Comunications Office, New York, 2001. United Nations Disability Statistics DATA BASE (DISTAT), Available from the United Nations Statistical Office, United Nations, New York United Nations: UN Disability Statistics Compendium, Department of International Economic and Social Affairs, Statistical Office, United Nations, New York 1990. United States of America: Americans with Disability Act (ADA), adopted on 26th July 1990 Von Tetzchner, S. (Ed.): Telecomunicaciones y discapacidad. Madrid, Fundesco, 1993. World Health Organization: Meeting of heads of WHO collaborating centres for the family of International Classifications. ICF as a framework for disability statistics in Africa, 21-27 October 2001 World Health Organization: The World Health Report 2001. Mental Health: New Understanding, New Hope. Geneva, 2001.

Council of Europe: Recommendation Nº R (92) 6: A coherent policy for the rehabilitation of people with disabilities (adopted by the Committee of Ministers on 9 April 1992) European Union: Communication from the Commission to the Council, the European Parliament, the Economic and Social Committee and the Committee of the Regions: Towards a Barrier Free Europe for People with Disabilities ", COM(2000) 284 final of 12 May 2000. European Union: Communication of the Commission on equality of opportunity for people with disabilities COM (96)406 final of 30 July 1996. European Union: Communication on Corporate Social Responsibility: A business contribution to Sustainable Development. COM(2002) 347 final. European Union: e-Europe. An Information Society For All. Communication on a Commission Initiative for the Special European Council of Lisbon,23 and 24 March 2000”, (COM 1999/687) . European Union: Green Paper Promoting a European framework for Corporate Social Responsibility COM(2001) 366 final European Union: Resolution of the council and of the representatives of the governments of the member states meeting within the council of 20 December 1996 on equality of opportunity for people with disabilities.


International Labour Organisation: C159 Vocational Rehabilitation and Employment (Disabled Persons) Convention. International Labour Organisation: R99 Vocational Rehabilitation (Disabled) Recommendation, 1955 International Labour Organisation: R99 Vocational Rehabilitation (Disabled) Recommendation, 1955. National Council on Disability: The Accesible Future. Washington, NCD, 2001. http::// Organization of American States: Inter-American Convention on the Elimination of all forms of Discrimination against Persons with Disabilities (AG/RES 1608 XXIX-0/99) Spain: Ley de 7 de abril de 1982, de Integración Social de los Minusválidos (LISMI). UNESCO: Final Report, World Conference on Special Needs Education: Access and Quality, Salamanca, Spain, 7 - 10 June 1994, UNESCO & Ministry of Education and Science, Spain, 1995. United Nations: World Programme of Action concerning Disabled Persons, adopted by the United Nations General Assembly at its 37th regular session on 3 December 1982, by its resolution 37/52. gopher:// United Nations: Chart of the United Nations, signed in San Francisco the 26th of June of 1945. United Nations: Convention on the Rights of the Child, adopted by resolution A/44/25 of the General Assembly (20 Nov. 1989). United Nations: Copenhagen Declaration on Social Development and Programme of Action of the World Summit for Social Development (A/CONF.166/9), UN, New York, 1995 United Nations: Declaration on the Rights of Disabled Persons (Proclaimed by General Assembly resolution 3447 (XXX), 9 December 1975). United Nations: Declaration on the Rights of Mentally Retarded Persons, (Proclaimed by General Assembly resolution 2856 (XXVI), 20 December 1971). United Nations: International Covenant on Civil and Political Rights, adopted by General Assembly resolution 2200A (XXI), 16 December 1966. United Nations: International Covenant on Economic, Social and Cultural Rights, adopted by General Assembly resolution 2200A (XXI), 16 December 1966. United Nations: Long-term Strategy to Implement the World Programme of Action concerning Disabled Persons to the Year 2000 and Beyond United Nations: The Beijing Declaration and Platform for Action - Fourth World Conference on Women,


Beijing, (1995) (A/CONF.177/20), UN, New York, 1995 United Nations: The Standard Rules on the Equalization of Opportunities for Persons with Disabilities. Resolution 48/96, annex, of 20 December 1993, adopted by the United Nations General Assembly, forty-eighth session United Nations: Universal Declaration of Human Rights, (Proclaimed by General Assembly resolution 217 A (III), 10 December 1948. United Nations: Vienna Declaration and Programme of Action, (A/CONF.157/23), adopted by the World Conference on Human Rights, 25 June 1993

International Organizations (The links are for web-pages which are specifically dedicated to disability on the Website of each organisation) United Nations International Labour Organization World Health Organization UNESCO European Union Council of Europe International Non-Governmental Organisations GLADNET Rehabilitation International Disbled People’s International Workability International European Disability Forum


Handicap International CIRRIE – Center for International Rehabilitation Research Information and Exchange Inter-American Institute on Disability National Organizations in spanish speaking countries IMSERSO – Instituto de Migraciones y Servicios Sociales (Spain) CERMI - Comité Español de Representantes de Minusválidos (Spain) Real Patronato sobre Discapacidad (Spain) Fundación ONCE para la cooperación e integración social de personas con minusvalías (Spain) FONADIS - Fondo Nacional de la Discapacidad (Chile) Comisión Nacional Asesora para la Integración de las Personas con Discapacidad (Argentina) Fundación Braille (Uruguay) Oficina de Representación para la Promoción e Integración Social para Personas con Discapacidad (Mexico) Internet Resources on Disability, in Spanish DISCAPNET – Web on disability promoved by ONCE Foundation Solidaridad Digital – e-journal on disability promoved by ONCE Foundation SID – Disability Information Service Internet Resources on Disability, in English Institute on Independent Living Disability Rights Advocates Women with disabilities


Inclusion Europe WorldEnable Official website of the European year of People with Disabilities disABILITY Information and Resources DISABILITY.DK (Information on disability in developing countries to support NGOs, governments and others working in the field) Action on Disability and Development website Asian and Pacific Decade of Disabled Persons, 1993-2002 EDF / FUNKWEB, Universal access website project International Disability and Development Consortium World Institute on Disability


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