Towards Strengthening the Rights of Persons with Psychosocial Disabilities in Africa

Annie Robb

A publication of the Pan African Network of People with Psychosocial Disabilities (PANUSP) Cape Town, 2012 www.panusp.org Email: info@panusp.org

Continental solidarity to promote and protect the rights of people with psychosocial disabilities

Acknowledgements
The Pan African Network for People with Psychosocial Disabilities (PANUSP) would like to express its deep appreciation to the Open Society Institute for the financial support, encouragement and participation which helped to ensure the success of Project: Strengthening the Pan African Network of Users and Survivors of Psychiatry (PANUSP) for the Realization of the Rights of Persons with Psychosocial Disabilities on the African Continent. PANUSP expresses gratitude to all resource persons who despite their responsibilities and work schedules agreed to devote time and their contributions to enrich the outcomes of the Project. PANUSP would like to especially extend its sincere thanks to Gabor Gombos of the United Nations Committee for the Rights of Persons with Disabilities for participating in the workshop and thus contributing towards the high quality of debates in plenary and working groups. We also thank Shuaib Chalklen, the United Nations Special Rapporteur for Persons with Disabilities for his invaluable support and patient guidance. Our thanks also include Helene Combrinck of the University of the Western Cape and Judith van der Veen, Programme Development Officer of CBM, for their roles in successfully facilitating the workshops. We also acknowledge Jolijn Santegoeds; founder Stig Mind Rights of the Netherlands whose documentation of the October seminar contributed greatly to capturing the richness and value of the event. We also thank Robin Hammond for taking photographs.

Forward
The political involvement of people with psychosocial disabilities in Africa in determining their life choices has begun to emerge. By embracing human rights as tools for development and as a mechanism to promote self representation, national organizations of the African Continent have over the past decade created a network to function as a voice for what is often a stigmatized and discriminated group of people. The voice of those that are perceived as mentally ill or mentally disturbed is often disregarded, considered irrelevant or ignored. Building of this continental network contributes towards challenging this invisibility and promoting meaningful inclusion. It should be noted that extreme poverty is often associated with living conditions of people with psychosocial disabilities. During conflict and post conflict and natural disasters, this is exacerbated and they become further vulnerable to human rights abuses as family structures disintegrate and existing supports collapse. Increasingly in Africa many people with psychosocial disabilities are becoming homeless and are abandoned by their families. Local authorities often place them in jails and other inappropriate places of detention. Deprived of their liberty, they often become forgotten persons. Most settings, including mental health care institutions in Africa are impoverished with essentials such as shelter, food, sanitation, health care and even bedding being inadequate or absent. Deprivation of essential needs is common place. Overcrowding often further exacerbates the already inhuman conditions. Extreme neglect, chaining and other cruel restraints, as well as solitary confinement are common practices not only in health facilities and other places detention but also in traditional healing camps and religious settings. These methods of driving out demons or evil spirits are torture and often result in extreme suffering and sometimes the death of the person. There often exists inadequate legislation or policies that promote and protect the rights of people with psychosocial disabilities. Although 50% of the African continent has signed the CRPD, implementation remains a challenge. Awareness, oversight and monitoring by governments, public health officials, the public, the press, academics and civil society organizations of the conditions and barriers faced by people with psychosocial disabilities must be encouraged. Stigma is not sufficiently addressed in Africa with many countries still having legislation that refers to people with psychosocial disabilities as lunatics or the insane. This is compounded by a focus on the lack of medical services available while ignoring the existing human rights violations and barriers to full inclusion and participation as citizens.

There exists a scarcity of Civil Society Organizations that directly address the plight of people with psychosocial disabilities. Disabled Peoples Organizations in Africa lack resources and are therefore often poorly structured and represented to advocate the challenges facing people with psychosocial disabilities. Furthermore, people with psychosocial disability may be socialized in a way that leads them to expect and accept a certain level of personal indignity, mishandling, violence and neglect as a part of their lives. They may become desensitized or resigned to such conduct. In more extreme cases, they may come to believe that abuse, neglect and ill treatment is deserved because of their impairment and lack of social value. The establishment of the Pan African Network of Users and Survivors of Psychiatry occurred within the historical context of the emergence of the global movement of users and survivors of psychiatry and the drafting of the United Nations Convention of the Rights of People with Disabilities (2008). The strengthening of this voice can bring meaningful change to the life conditions to people with psychosocial disabilities and their families and support systems. Shuaib Chalklen United Nations Special Rapporteur for Disability March 2012

Acknowledgements, Foreword

Contents

Chapter 1: Human Rights and Self Representation of People with Psychosocial Disabilities Chapter 2: Country Organizations of the Pan African Movement for People with
Psychosocial Disabilities 2.1 Ghana 2.2 Kenya 2.3 Malawi 2.4 Tanzania 2.5 Uganda 2.6 Rwanda 2.7 South Africa

Pg. 7 Pg. 11

Chapter 3: Overview of the Status of Mental Health Legislation in PANUSP Countries Chapter 4: Challenges faced by People with Psychosocial Disabilities in Africa
4.1 Participation in Political and Public life 4.2 Marriage, Family, Parenthood and Relationships 4.3 Employment and Income Generating Opportunities 4.4 Access to Health 4.5 Torture, Cruel Inhuman and Degrading Treatment or Punishment 4.6 Living in the Community 4.7 Access to Justice 4.8 Conclusions

Pg. 25 Pg. 28

Chapter 5: Towards Strengthening the Pan African Network Chapter 6: A Narrative of October 2011 Revival of the Pan African Network Chapter 7: Action Plan for Future of the Pan African Network Chapter 8: National Human Rights institutions and People with Psychosocial
Disabilities

Pg. 38 Pg. 41 Pg. 66 Pg. 69 Pg. 72 Pg. 79 Pg. 82 Pg. 83 Pg. 84 Pg. 93 Pg. 94

Chapter 9: Implementing Engagement with International and Regional Bodies Chapter 10 Building National Organizations towards a Strengthened Network
Appendix 1: Cape Town Declaration 2011 Appendix 2: Cape Town Declaration 2011 (French) Appendix 3: Constitution of PANUSP Appendix 4: Participants of October Seminar Appendix 5: Seminar Programme

Chapter 1 Introduction: Human Rights and the Self Representation of People with Psychosocial Disabilities
The independent political involvement of people with psychosocial disabilities, that which is referred to as the user and survivor movement could be argued to be have been initiated in 1991 in Mexico. At this World Federation of Mental Health (WFMH) conference, a group of users and survivors of psychiatry formed the World Federation of Psychiatric Users (WFPU). This was to establish an independent voice that guaranteed freedom from paternalism and influence of medical professionals and service providers. This name was changed in 1997 to World Network of Users and Survivors of Psychiatry (WNUSP). The group met biannually at WFMH conferences and in 1999, funding was successfully sought to establish WNUSP formally. An interim secretariat was established in Denmark and preparations and planning for the initial congress implemented. In July 2001, in Vancouver, the first independent General Assembly of the World Network of Users and Survivors of Psychiatry was held. Africa had no representation at this Congress. However, the emerging WNUSP had since 1995 been a member of the Panel of Experts advising the UN on the Standard Rules for the Equalization of Opportunities for Persons with Disabilities. The panel was made up of representatives from the major international disability organizations such as World Blind Union, Disabled Persons International, World Federation of the Deaf, Rehabilitation International, Inclusion International and the World Network of Users and Survivors of Psychiatry. The Standard Rules on the Equalization of the Opportunities for People with Disabilities were adopted 23 December 1993 (48/96)2 and was an outcome of the Decade of Persons with Disabilities (1980 1990). It was not a legally binding document but formed a strong moral and political commitment of Governments towards people with disabilities. These 22 Rules promoted equal participation, target areas for equal participation, implementation measures and monitoring within a human rights framework. The second General Assembly of WNUSP met in July 2004 in Denmark and had grown from previously representing 12 countries in 2001 to 50 countries. Recognizing that the Global South was not represented at WNUSP, WNUSP had set a priority to make this second General Assembly a more representative global event so as to firmly establish itself as the international voice of users and survivors. Networking with African organizations in the lead up to the General Assembly had resulted in a South African consumer, Moosa Salie being co-opted in 2003 onto the WNUSP Board and delegates being invited from Zambia, Ghana, Uganda, Tanzania, Ethiopia, Cote DIvoire, Nigeria and South Africa.

http://www.un.org/esa/socdev/enable/dissre00.htm

The WNUSP had by 2004 become internationally recognized as the voice of users and survivors of psychiatry. It had become a member of International Disability Alliance and had also actively collaborated in the ad hoc committees in the drafting of the United Nations Convention on the Rights of People with Disabilities. It had applied for accreditation at the United Nations. In 2004, within this context, it was proposed and announced to form an African regional umbrella body in line with strategy to establish continental networks to strengthen the influence of WNUSP. Until 2004, global South representation of people with psychosocial disabilities to a large extent had been excluded. The formation of the Pan African Network of Users and Survivors of Psychiatry in 2005 was an attempt to include the under represented organizations of low and middle income countries of the global south. The inaugural meeting of organizations representing users and survivors on the African continent took place the following year, 2005, in Kampala, Uganda. Representative from Guinea, Ghana, South Africa, Malawi, Zambia, Tanzania, Rwanda and Uganda gathered to establish the Pan African Network of Users and Survivors of Psychiatry. This was to be an independent user and survivor network of African organizations that would strengthen the voice regionally and was influenced by the existing structure of the World and European network organizations and their activities.

Kampala delegates 2005 At this meeting3 a mission statement for the network was adopted: A voice to promote and protect the rights and dignity of users and survivors of psychiatry. Thematic areas were identified such as advocacy and lobbying, capacity building of individual country organizations, networking and awareness raising. A draft constitution based on the WNUSP statues was
3

2005, Mental Health Uganda, Minutes of Pan African Inaugural Meeting

presented and a Board was elected. The following year, in 2006, a meeting of the Board was held in Cape Town and capacity training of the Board held. On a global level, in 2006, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities were superseded by the United Nations Convention on the Rights of People with Disabilities (CRPD). Importantly, the CRPD in the Preamble (m) recognized the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in their enhanced sense of belonging and significant advances in the human, social and economic development of society and the eradication of poverty. This established the CRPD as both a human rights and development document that encouraged people with psychosocial disabilities to become directly involved and to participate in contributing towards promoting and protecting their rights and improving their social and economic conditions. It clearly called for the effective input from civil society organizations and actors that represented persons with psychosocial disabilities. Furthermore, the Preamble (n) recognized the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices. This supported the call for independent authentic civil society organizations that were lead by and represented voice of people with psychosocial disabilities themselves. Article 3(c) stated that one of the basic principles of the Convention was full and effective participation and inclusion in society and this gave further impetus for right and obligation that people with psychosocial disabilities be listened to. It also conferred an obligation and imperative that people with psychosocial disabilities organize effectively to give meaning to participation and inclusion. The CRPD was the first United Nations Convention to be drafted with extensive civil society collaboration. Disabled Peoples Organizations played a leading role. An international team of users and survivors of psychiatry headed by Tina Minkowitz participated actively in the negotiations from the first meeting in 2002 until the final adoption in 2006. This resulted in users and survivors of psychiatry being firmly accepted on an international platform as disability partners and included in the disability movement as important role players. The CRPD strengthened the human rights and developmental objectives for people with disabilities and emphasized their potential active involvement in realizing these objectives. Unlike the Standard Rules that carried moral obligations, this was a human rights treaty that created legal obligations for Governments. It also emphasizes the importance of independent user and survivor voices. The treaty clearly articulated that the medical and charity models where medical professionals and carers spoke or acted on behalf of persons diagnosed with mental illness did not equate to equality and full inclusion. This was supported by article 12 that obligated States to recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. Article 19 obligated States to take effective and appropriate measures to facilitate full 9

inclusion and participation of people with disabilities in the community. Thus the CRPD recognized that disability was not an individual medical tragedy but rather a social phenomenon where the interaction with existing barriers hindered the full enjoyment of life and exercise of rights. People diagnosed and living with mental illness had traditionally been spoken for by mental health professionals within the confines of psychiatric discourse. This could be interpreted as a barrier to full inclusion and participation. The emergence and growth of the disability movement in 1980s and 1990s, together with the academic field of Disability Studies and the contributions of WNUSP as a recognized stakeholder in the negotiations of the CRPD, created a fertile space for users and survivors of psychiatry to create a strong independent political voice on an international forum. By 2011, the evolution of CRPD was recognized as a mechanism to promote and protect the rights of a group of people that had a mental disability. The CRPD defines people with disabilities as those that have long-term physical, mental, intellectual or sensory impairments. The definition of this group was contested during the drafting of the CRPD and remains contested when naming the group. However it must be remembered that disability is an evolving concept that results from the social interactions experienced due to environmental and attitudinal barriers that hinder full equality and participation. This is a diverse group and includes those that live with a psychiatric diagnosis or mental illness, those that have recovered, those that have survived abuses of a mental health care system, those that have survived a mental illness, those that are regarded as mad as well as those that were users of or consumers of mental health care services. Among the group, many do not identify with the term mental disability but rather prefer the term psychosocial disability. Some identify as living through or with madness. Some accept and identify with a western scientific medical explanation while others reject a medical explanation. What was not contested was that people that lived under the broad umbrella of mental disability needed to effectively organize to realize their rights and to speak out independently. Embracing the CRPD should be increased at national levels in African countries and resources are needed to be channelled to do this. A strong disability rights approach broadens understanding and ways of working. It influences and assists stakeholders move beyond the medical model. Stigma and discrimination can be challenged in this rights based approach and strengthen the inclusion and participation of people with psychosocial disabilities in the realization of their rights.

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Chapter 2: Country Organizations of the Pan African Movement for People with Psychosocial Disabilities
By 2011, in Africa the organizations that had emerged to represented people with psychosocial disabilities and were the active PANUSP members or allies consisted of MindFreedom Ghana, Mental Health Users and Survivors of Psychiatry of Kenya (USPK), Mental Health Society of Ghana (MEHSOG) Users and Carers Association of Malawi (MeHCAM), Tanzanian Users and Survivors of Psychiatry (TUSPO), Mental Health Care Users Network of Zambia (MHUNZA), Ubuntu South Africa, National Organization of Users and Survivors of Rwanda (NOUSPR) and Mental Health Uganda. In November 2010, Ubuntu, the South African member organization, took the lead and began working on a proposal to seek funding for a 6 month project. It was recognized that the existing regional representation was organizationally weak and therefore not able to function as a sufficiently effective network in voicing the challenges that faced their constituents on the Continent. In 2010, with more than 50% of African countries having signed the CRPD, the legal framework and political discourse to independently promote and protect the rights of users and survivors was available. In order to address the lack of capacity, PANUSP sought the support of the United Nations Special Rapporteur for Disability, Mr. Shuaib Chalklen. A project that would include capacity training for existing PANUSP leadership was an obvious need to achieve an organizational structure that could strengthen the realization of the rights of persons with psychosocial disabilities on the African Continent. Funding for this event was successfully sourced. Profiles of the Member Countries and their Organizations of Pan African Network were collected along with information of existing relevant disability and Convention on the Rights of Person with Disability (CRPD) status so that an overview could be established of the network. 2 (1) Ghana

In Ghana, the National Constitution of Ghana, 1992, states the rights of persons with disabilities. Ghana passed the Persons with Disability Bill in June 20064 which is aimed at enabling disabled persons to enjoy rights enshrined in the constitution (Article 29 (8)) with the view to improving their living standards and mainstreaming their activities.5 Ghana has signed both the CRPD and the Optional Protocol but has not ratified either of the treaties. A Parliamentary decision to ratify was taken in March 2011.

4 5

http://gapagh.org/GHANA%20DISABILITY%20ACT.pdf http://www.add.org.uk/case_study.asp?ref=82

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2 (1) a: Mindfreedom Ghana (MFGh) Office: House # F302/1, Richter Street, Kuku Hill, Osu-Accra, Ghana Contact: Telephone/fax no. +233 302 774261 Email: mindfreedomghana@yahoo.co.uk Contact Person: Dan Taylor MFGh has a partnership with the Ghana Federation of the Disabled (6). MFGh is a member of the Disability Network of Ghana which meets every quarter to deliberate on pending matters and strategise for advocacy. MFGh also participates in meetings and activities of the Ghana National Council on Persons with Disability7 (a statutory body) when invited or publicised. MFGh was established in September 2004 as a non profit organization with its broad area of operation being in mental health matters in Ghana. Forming MFGh was triggered by a series of events and stories which revealed a wide range of human rights violations of persons with mental disorders in the psychiatric hospitals and communities. The vision of MindFreedom Ghana is directed towards improving the mental health and social lives of persons with psychosocial disabilities in Ghana as well as promoting their human rights and dignity. In its mission, MFGh seeks to foster and strengthen links with analogous minded organizations both locally and internationally to harmonize operations and explore diverse forms of cooperation as well as assistance towards persons with mental disabilities. MFGh seeks to develop and facilitate the provision of rehabilitative schemes that would ease the re-integration people with psychosocial disabilities into the society and hence assist with a means of dignified sustainable livelihood. The objectives of MFGh are: to support and assist persons with mental disorders in their treatment regimen and further advocate for conditions that would not infringe on their human rights and dignity in their communities and psychiatric institutions to seek to improve upon the social, economic and general conditions of persons with mental disorders and deal with the stigma they suffer to promote activities that would make persons with mental disabilities have a sense of acceptance and belonging in their families and communities Develop and embark upon educational activities meant to avert various conditions that precipitate mental disabilities and ensure that both sufferers and survivors are well integrated into their communities.
6 7

http://www.gfdgh.org/ http://www.gfdgh.org/national%20council%20on%20disability%20inaugurated.html

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Membership of the organization is open to persons of all ages, sexes and from all walks of life who agree with the aims, objectives and aspirations of the organization. The organization aims to accord equal opportunities to all its members without any form of discrimination or exclusion. The membership is composed of both users and survivors of psychiatry as well people who have the desire to associate themselves with our work. 2 (1) b Mental Health Society of Ghana (MeHSOG) Address: 233/18 Tenbibian Street (near Abelenkpe Taxi Station) Abelenkpe, Accra. P. O. Box KN 5556 Kaneshie-Accra Email: info@mehsog.org Contact Person: Humphrey Kofie www.mehsog.org MEHSOG, a broad-based membership user association works to empower user groups of people with mental illness and/or epilepsy to fight for their rights, empower communities to ensure social and economic integration of mentally ill people. It seeks to influence key policy decision makers to develop appropriate legal and policy frameworks to address the needs and rights of people with mental illness and their primary carers, and also, to deepen existing mental health and development programmes and provide a national outlook. In order to realise this, MEHSOG supporting the formation of community based Self-Help Groups, representative District Associations and a nation wide user movement. Through these structures it addresses some of the numerous issues that people with mental illness and their primary carers face in their daily lives. This includes stigma and discrimination, exclusion from their communities, frequent denial of access to basic human rights such as health, social and economic wellbeing, participation in both political and social life, freedom from inhumane treatment and protection from persecution. MeHSOG seeks to work through the creation of advocacy platforms for groups of mentally ill people and their carers through the formation of district and national associations and alliances. Through the national association of mentally ill people, their carers have been developed to represent the needs of their members. The objectives of MeHSOG: To bring all people with mental illness and epilepsy in Ghana into a unified and representative association. To promote the socio-economic wellbeing of people with mental illness and/or epilepsy To cooperate with like-minded societies, association and bodies and with the Government of Ghana and advocate in pursuit of advancement of mental health. To educate the public and increase interest in psychosocial disability issues.

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2 (2) Kenya Kenya passed The Persons with Disabilities Act in 2003 and the Ministry of Gender, Children and Social Development is the focal point for disability. Kenya signed and ratified the CRPD in May 2008. It has not signed or ratified the Optional Protocol. The Initial Report was due 10 June 2010 but has not been submitted as of March 2012. The Kenyan Human Rights Commission is the independent monitoring mechanism appointed for implementation. Users and Survivors in Kenya (USPKenya) USPKenya is a member of the United Disability Persons of Kenya disability umbrella body. USPKenya is represented on the CRPD monitoring committee with the Kenya Human Rights Commission USPKenya is a Member of Kenyan Mental Health Policy Drafting Team USPKenya is currently participating in the parallel CSO reporting for the CRPD. USPKenya was started in 2007 by 6 people, all of them being people that have mental illness diagnosis. These six founder members were at different levels of recovery. An organization was formed with the following vision: A world in which people affected by mental illnesses are not only treated with honour and dignity, but realize their potential. The mission is: To enable poor people with mental illnesses live and work successfully in their communities. In order to achieve this, a constitution was drafted that outlined the objectives to achieve this vision and mission. The following objectives were formulated: Advocate for the advancement of human rights for persons with mental illnesses through various lobbying and advocacy initiatives targeting the government, medical fraternity, insurance companies and other service providers. Provision of national and regional representation and consultation to influence matters that affect persons with mental illnesses. Encourage the development of local users/survivor groups at grass root and national levels. Facilitate effective information exchange among users/survivor groups in and beyond. Develop network opportunities for individuals and groups of individuals and groups of users and survivors of psychiatry in Kenya and beyond. Provide advice on prevention and treatment of mental illnesses to equip people affected by mental illnesses to demand for the right treatment. The organisation was formally registered in the year 2007 by the NGO Coordination Board and a certificate of registration issued to that effect.

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The governance structure of USPKenya has a two tier structure. There is a professional board in place and a secretariat which is completely separate from the board. The board mostly deals with matters of policy and meets on a quarterly basis whereas the secretariat deals with the day to day running of the organisation on a part time and voluntary basis. The organizations membership has grown since 2007. Individual membership and community based organisations comprise the membership. There are approximately 55 individual members and 25 groups with an average of 20 members each. This would bring the total membership to about 555 members. The main activities of USPKenya have been advocacy at the community and national level, running support group meetings, training carers of persons with mental illness and monitoring the media. There is an office which was donated through a partnership between BasicNeeds UK in Kenya and a faith based organization. There are no full time employees. USPKenya staff work on a part time basis and relies mostly on volunteers. 2 (3) Malawi

The Constitution of Malawi provides for protection of people with disabilities. There is a National Policy on the Equalization of Opportunities of Persons with Disabilities. 8 Malawi signed the CRPD 27 September 2007 and ratified it 27 August 2009. The initial report is due 27 September 2011 but has not been submitted as of March 2012. Mental Health Care Users and Carers of Malawi (MeHUCAM) MeHUCAM is an associate of Federation of Disabled Persons of Malawi (FEDOMA) Contact address: P.O. Box 70155, Chilomoni, Blantyre 7 Contact telephone no: 0265 18448181 Email address: amos_action@yahoo.co.uk Contact person: Action Amos MeHUCAM was founded on 27th February 2011 out of a need of users to have a voice. The vision was to promote the human rights of persons with mental health problems in Malawi, and to work for equality of rights and opportunities for persons with mental health problems. The goals include the following: To carry out awareness campaigns on the nature of mental health problems and availability of treatment, with the purpose of reducing stigmatising attitudes toward those living with mental health problems, and improving access to mental health care. Promote training of leaders of mental health organizations and administrative personnel.
8

http://www.fedoma.net/downloads/draft-national-policy.pdf

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To facilitate the full participation of people with mental health problems (users), and carers of people with mental health problems, in the design, formulation, implementation and evaluation of policies, programmes, and services for their needs, and to monitor, evaluate and review such services. Facilitate the exchange of information in the field of mental health through research, civic education programmes and seminars. Affiliate and cooperate with other regional, national and international organizations that work in mental health care, support and advocacy. To promote and encourage representation of gender and youth within organizations that work in mental health care, support and advocacy. The governance structure is comprised of a majority of people that are users and overseen by a group of Trustee as follows: Psychiatrist , Disability advocate(Survivor), Lawyer, Media Personnel, Psychologist, Mental Health College Principal and an Advisory Committee which comprises a Psychiatrist , Disability Advocate, Psychologist, Psychiatrist Nurse. There is also an Executive Committee. The organization was registered by government in 2012. The organization is just emerging and relies on volunteers. Partners and allies are the Human Rights Consultative Commission, Federation of Disability Organizations in Malawi (FEDOMA), College of Medicine and various government departments. 2 (4) Tanzania The 1977 Constitution of Tanzania and its amendments recognise the rights of persons with disabilities and prohibit all discrimination. There also exists the Disabled Person (Care and Maintenance) Act 19829 and the National Policy on Disability of 2009. In April 2010 Tanzania enacted the Disability Law which gives provision of establishing a council to be known as the National Advisory Council for Persons with Disabilities. The CRPD and the Optional Protocol was signed and ratified in 2009. The initial Report is due December 2011 but has not been submitted as of March 2012. Tanzania Users and Survivors of Psychiatry Organization (TUSPO) Address: Pugu Ward, Bombani Location, Ilala District Contact telephone: +255 775 013 749, +255 784865746,+255 716 115566 Contact email: a_efound@yahoo.com Contact Person: Eliezer Robert Mdakilwa TUSPO is one among the 9 members of SHIVYAWATA 10 the national umbrella organization for DPOs.
9

10

http://www.parliament.go.tz/Polis/PAMS/Docs/3-1982.pdf http://mnada.net/shivyawata/

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TUSPO - Tanzania Users and Survivors of Psychiatry Organization is the first association of its kind in the country. TUSPO's vision is a better life for people in Tanzania with previous and current experience of psychiatric illness. RSMH, the Swedish National Association for Social and Mental Health, established in 1967 and aims at offering people with psychiatric illness opportunities for a good life contacted TUSPO in 2004. A group of about 10 TUSPO founders had organised a group of users in Dar es Salaam. The reason for organizing users was that amongst the founders some had family members, friends and neighbours who were regarded as mentally ill and therefore had the practical experience of the stigma and discrimination that the community awarded them. Secondly there appeared to be an increased number of people with psychosocial disabilities roaming around the streets of Dar es Salaam and other towns with no support. Thirdly, the success the Blind, Deaf, Albino and other disability group had attained by through forming their right movements (NGOS) inspired the formation an organization for persons with psychosocial disability. In 2005 TUSPO and RSMH exchanged visits to Sweden and Tanzania. Discussions about collaboration took place. Subsequently it was agreed to apply to SHIA for a Preplanning grant for 2007. SHIA is the Swedish Organisations of Disabled persons Aid Association and is a NonGovernmental Organisation actively engaged with international development co-operation. The application was successful, and TUSPO embarked on project activities during the spring of 2007 following organisation assessment of TUSPO by RSMH and SHIA. A follow up of the Preplanning project by RSMH also took place. It was then agreed to apply to SHIA for a oneyear prolongation of the Preplanning project for 2008. TUSPO achievements so far include among other things establishing a planning secretariat and starting the process of building a structure aimed at becoming a national organisation. Activities to raise awareness of and changing attitudes towards users and survivors of psychiatry have been implemented. TUSPO lobbied for presidential assent of Mental Health Act which was finally passed in 2008 (11). TUSPO is currently lobbying for the making of regulations in order that the Act can be implemented. TUSPO have held various seminars, workshops and meetings in Kisarawe District raising awareness of policy makers, religious leaders, school teachers, community leaders and traditional healers on the nature, prevention and cure of the disease. We are raising awareness of the community on their rights as provided through the Mental Health Act 2008. Initial steps have also been taken to investigate ways and means of economic empowerment for users and survivors of psychiatry in Tanzania. TUSPO was registered on 23rd November 2006 under the National NGO ACT no.24 of 2002.Its registration number is 00NGO1787 and has an office in Dar es Salaam. There are 9 volunteer staff members who work towards implementing the vision, mission and objectives of TUSPO as stated in the Constitution:
11

http://www.parliament.go.tz/Polis/PAMS/Docs/21-2008.pdf

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The vision of TUSPO is: We envision a Tanzania society where the rights of persons with psycho-social problems are not violated or their needs denied. The mission is: To initiate qualitative community based programs for users and survivors of psychiatry in Tanzania through capacity building, advocacy, economic empowerment and medical interventions. The goals of TUSPO are: To advocate for the fundamental human rights and the dignity of human persons for the mentally sick with special emphasis on those in prisons, refugee camps, orphan homes, disaster victim camps, as well as those who are mentally sick due to HIV/AIDS and other physical diseases, including head injuries sustained in accidents. All these to be done irrespective of age, ideology, sex, colour, race etc. through community education. To support and promote the right to professional drug & alcohol abuse free community. To support and promote the right to establish user controlled initiative inside and outside psychiatry. To fight against psychiatric stigma in our community. To ensure that the lives and health of the users and survivors of psychiatry, members of TUSPO, and their care providers are covered by comprehensive insurance policy. To get work for a proper salary for mentally disabled people through occupational therapy. To provide training to the trainers of mental health as well as any other relevant staff. To provide training to people with mental disabilities on occupational income generation activities through seminars/workshops etc. To collaborate with community in home based health care in the implementation of preventive measures and promotion of mental health care. To liaise and cooperate with local and central government but also all other charitable organizations with similar objectives like ours. To carry out any other activity that TUSPO deems important in line with its policies. To promote gender equality by fighting sexual harassment and unwanted pregnancies among men and women users and ex-users of psychiatry. Membership consists of family, caregivers and users and survivors of psychiatry but is not restricted and can include any stakeholder that has an interest. The constitution does not make provision for TUSPO to be a user lead organization. 2 (5) Uganda The Constitution of 1995 states as follows: Persons with disabilities have a right to respect and human dignity and the State and society shall take appropriate measures to ensure that they realize their full mental and physical potential. In 2006, the National Disability Act was adopted. Uganda signed CRPD and ratified the Optional Protocol on 25 September 2008. 18

Initial Report was due 25 October 2010 but has not been submitted as of 2012. National Union of Disabled Persons Uganda is compiling parallel Report12 Mental Health Uganda (MHU) Office: Plot 56, Kanjokya Street, Kamwokya, Kampala Contact Telephone: +256 31 262062 Contact email: mhu@mentalhealthuganda.org Contact Person: Julius Kayiira Website: www.mentalhealthuganda.org MHU is a member of the disability umbrella group is the National Union of Disabled persons of Uganda MHU was initially started in 1997 that brought together persons diagnosed with mental illness and their carers. MHU was an idea of psychiatrist, Dr. Florence Baingana who thought it was important for persons with mental illnesses to have a collective voice and advocate for better mental health services. This was in 1997. She recruited a psychologist to lead the organisation. They first moved to psychiatric units to encourage health workers develop a harmonious relationship with the users. The first psychiatric user association was in Gombe, Mpigi district. After 3 years of hard work and expanding the idea to other districts, they resolved that it should become a National Organisation. They held their first Annual General Meeting and the first Board of Directors was elected. Mental Health Uganda was registered as an NGO in 2001. MHU has grown towards being a pressure group to advocate for mental health care services and to address the needs of poverty endemic to users and survivors of psychiatry. MHU now operates in 19 of the 80 districts of Uganda. There are now 4 full time paid staff and about 20 volunteers working with the organisation. MHU was coordinator of the Pan African Network of Users and Survivors of Psychiatry (PANUSP) 2005 - 2011. MHU is also a member of the World Net work of Users and Survivors of Psychiatry (WNUSP). MHU hosted the 2005 PANUSP Launch and The 2009 WNUSP General Assembly which were both held in Kampala, Uganda. One of our members makes up the Board of Directors on both PANUSP and WUNUSP. The vision of MHU is: A world where people with psychosocial disabilities are embraced with respect and enjoy their human rights on an equal basis with other citizens. The objectives of MHU are: Improved mental health in Uganda
12

http://www.nudipu.org.ug/consultancy.php

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Improved livelihood of people with mental illness Capacity building of persons with mental illness and their families to ensure an effective contribution to their welfare Reduction of stigma and negative attitudes Advocate and lobby for the rights of persons living with mental illness and People with Disabilities (PWDs). Membership of MHU comprises of users/ consumers of mental health services, concerned parents/ guardians and other people who embrace the MHU mission. The General assembly is the supreme policy making body of MHU comprising delegates from districts assemblies where MHU operates. The GA elects a BOD, which makes decisions on behalf of the General Assembly and monitors the day today running of MHU. The BOD operates through the secretariat, which is the executing organ of the organization; it manages all programmes, implements the decisions of the BOD and takes care of the day today running of the organization. The secretariat reports to the BOD. The key activities of MHU are: Advocacy; Membership mobilisation; Community sensitisation; Livelihood promotion; and User rights promotion 2 (6) Rwanda

The 2003 Constitution of Rwanda in article 9 the State is committed to address social inequality, economic injustice and other forms of discrimination. Furthermore, the Constitution commits the State to uphold and promote the human rights of all citizens. It provides for the establishment of a National Human Rights Commission and maintains that all persons are equal in the eyes of the law. The 2007 law protecting persons with disabilities regulates the representation of PWDs in local government, as specified in the Ministerial Order No. 010/07/01. Rwanda signed and ratified both the CRPD and the Optional Protocol in 2008. The initial Report was due in January 2011 but has not been submitted. National Organization of Users and Survivors of Psychiatry of Rwanda (NOUSPR) Contact telephone: +250 788777666 Contact email: noursprrwanda1@rocketmail.com Contact person: Sam Badege Ntazinda (badegesam2@yahoo.fr) Website: www.nouspr.org Member of National Union of Disability Organizations in Rwanda

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NOUSPR, the National Organization of Users and Survivors of Psychiatry in Rwanda, is a Rwandan organization founded in 2007 by persons with psychosocial disabilities/users and survivors of psychiatry. It was registered in 2010 with the Ministry of Local Government, Community Development and Social Affairs under the law No.20/2000 of 25/07/2000 that governs non-governmental organizations in Rwanda. (Ref. certificate No. 062/2010). NOUSPR advocates for a change in the laws, policies and practices that do not support persons with psychosocial disabilities to enjoy human rights and to be respected and trusted as equal members of society. The users/survivors movement should also help governments in following up on the implementation of the human rights principles and observations of the CRPD Committee made to State Parties. It is on record that the users/survivors movement played a key role in formulating the CRPD and it is now clear that coordination of the users/survivors movement both at local and international levels is strong enough to do this consultative work. 2 (7) South Africa

The Constitution of South states that there should be no discrimination based on disability. Important legislation that addresses discrimination is the Prevention of Unfair Discrimination Act (Act 4 of 2000) (PEPUDA) and the Employment Equity Act (Act 55 of 1998). The South African Human Rights Commission has Section 5 Committee on Disability. South Africa signed and ratified the CRPD and Optional Protocol in 2007. The initial Report was due 2010 a draft is being circulated but as of March 2012 has not been submitted. Ubuntu Centre Contact: 105 Coronation Road, Maitland Contact Number: +27 720441024 Contact email: theubuntucentre@gmail.com Website: www.ubuntusouthafrica.org Ubuntu is recognised by South African Disability Alliance as the only independent DPO representing persons with psychosocial disabilities in SA but not a full member. Member of SAHRC Section 5 Disability Committee Ubuntu was formed in March 2007 and formally launched at a public meeting on 25 August 2007. The first board then proceeded to draft a strategic plan in order to achieve NPO registration. It was registered in June 2008. Membership is users and survivors of psychiatry residing in SA. Currently most of our +-20 signed up members being from Cape Town, and its surrounding areas. There is a smaller presence in other parts of the country with members in Gauteng and Eastern Cape. Ubuntu is governed by a board, at the core of which is the executive, consisting of the Chairperson, Secretary and Treasurer. Ubuntu does not have a funded office and relies on the work of volunteers. 21

The Mission Statement of Ubuntu is: Psychiatric users and survivors have traditionally been spoken for by the Mental Health Care System. Not having a voice, our opinions and rights are very often disregarded and silenced. Having no organisation in South Africa to address and remedy this situation, there was a need to create an effective platform to achieve this objective. This organisation is founded to enable users and survivors to empower themselves and to be an independent representative voice. Users and survivors of psychiatry in South Africa need to reclaim their dignity using the principles of self help, the belief in recovery and healing of the spirit, peer support and challenging common cultural constructions of mental illness and abuses within the Mental Health Care System. The Objectives were listed as: To assist Users and Survivors of psychiatry in South Africa to reclaim their dignity To provide a safe environment, free from discrimination, and a networking forum that shall enhance the well being of Users and Survivors To develop a peer and mutual support network amongst Users and Survivors To provide advice and engage in advocacy work that strives to find resolutions to the problems faced by Users and Survivors of psychiatry To function as a lobby group that is dedicated to social justice, human rights, empowerment and full participation of all Users and Survivors of psychiatry within civil society in South Africa To build relationships with other NGOs, NPOs, DPOs, CBOs and other relevant institutions and individuals to further its objectives Activities: Ubuntu has been involved in advocacy work on local regional and international level. For example on an International level, Ubuntu submitted a commentary to the WHO on its draft Toolkit on quality assurance in mental health facilities (2009), October 2009, made a written submission to the OHCHR on its day of general discussion on article 12 and submitted a Universal Periodic Review Submission in 2011. On a Regional level, Ubuntu participated in a Secretarial of the African Decade for People with Disabilities mission as part of their team, to Banjul Gambia, to the African Commission on Human and Peoples Rights to input on the draft African Disability protocol. On a National Level over past years, Ubuntu was part of a broad disability and stakeholders forum meeting as the Section 5 committee convened by the SAHRC Participated in national and local disability policy consultations and made a submission to the IEC on contradictions between the Electoral Act and the MHCA of 2002, on the right to vote for persons with psychosocial disabilities in 2010 and input on Policies relating to regulating registration of Mental Health Institutions. In 2010, Ubuntu produced a brochure on the implications of the CRPD for persons with psychosocial disabilities in SA. Advocacy work has included a submission to SAHRC on sexual orientation exclusion clause of UN Resolution. Ubuntu is cooperating with South African Disability Alliance on a project to be funded by DRPI on disability rights monitoring. Ubuntu has been part of the advisory group to the Mental Health and Poverty Project which drafted a new MH policy for the department of mental 22

health and substance abuse in the national health dept. Ubuntu is keeping in contact with the dept in regards to inputting into any public participation process on the draft policy. 2 (8) Zambia

The 1991 Constitution as amended in 1996, contains a provision on disability. The Persons with Disabilities Act 1996 prohibits discrimination and establishes the Zambian State Agency for People with Disabilities.13 The CRPD was signed and ratified 2008 and the Optional Protocol is signed. The initial report was due in March 2011 but is yet to be submitted as of March 2012 Mental Health Users and Survivors of Zambia (MHUNZA) Address: Salvation Army Complex, 8 Chishango Road, Villa Elizabetha, Lusaka, Zambia Contact: +260-211-237191 or +260978818600 Email: mhunza@coppernet.zm or usersmentalhealth@yahoo.com Mental Health Users Network of Zambia is a non-governmental organisation formed in 2001 and registered in 2003 under the Societies Act. The main mission of MHUNZA is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with mental disabilities, and to promote respect for their inherent dignity. MHUNZAs objectives are to (a) lobby and advocate for the rights of persons with mental disability; (b) mobilize and sensitize the community on mental health issues; respond to HIV and Aids in order to minimize the infections among persons with mental disability. South African Mental Health Advocacy Movement (SANHAM): SANHAM is an ally of PANUSP but not a member, as it is not registered as an independent NGO. The organisation was launched in 2009. A process of establishing the Advocacy Groups started in 1998 as various support programmes by Provincial Mental Health Care NGO providers. It encouraged that the Mental Health Care Users be empowered to speak for themselves. The Mental Health societies that established groups then nominated Mental Health Care Users to be provincial representatives on this Forum. The goal of SAMHAM is to be an advocacy group that will ensure social justice for persons with mental illness and intellectual disability through participating in decision making within the South African Federation for Mental Health (SAFMH) and participate and contribute in service delivery as well as in policy formulation affecting the organisation and persons with intellectual disability and mental illness. SAMHAM is governed by the constitution of the SA Federation of Mental Health.
http://www.ilo.org/wcmsp5/groups/public/@ed_emp/@ifp_skills/documents/publication/wcms_1151 00.pdf13

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Membership is open to all Mental Health Care Users. The objectives of SAMHAM are: Self advocacy and lobbying on rights of persons with intellectual disability and or mental illness. Participation in policy formulation of the organisation and of the country. Mental health promotion and awareness. Sensitisation of employers Recruitment and establishing of advocacy groups in their regions.

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Chapter 3: Overview of the Status of Mental Health Legislation in PANUSP Countries

There often exists inadequate legislation or policies that promote and protect the rights of people with psychosocial disabilities from human rights violations. Although 50% of the African continent has signed the Convention on the Rights of People with Disabilities (2008), there is little evidence of implementation and redrafting of legislation to be compliant with the CRPD. All PANUSP members have signed the CRPD yet there is little if any awareness, oversight and monitoring by governments, public health officials, the public, the press or police of settings where people with psychosocial disabilities receive treatment, are deprived of their liberty or in the community settings. Exacerbating and compounding this is that stigma is not addressed in Africa, with many countries still having legislation that refers to people with psychosocial disabilities as lunatics or the insane. These terms stigmatize persons with psychosocial disabilities as criminals and dangerous persons. Mental Health legislation mostly remains a colonial remnant with a paradigm of a medical model of understanding mental illness while ignoring the existing human rights violations and other social solutions. The following is an overview of existing legislation in PANUSP member countries. Tanzania has the Mental Health Act 2008 The current Mental Health Act No 21 of November 2008 14is quite protective but cannot be implemented as Regulations are yet to be drafted.(TUSPO) Uganda has the Mental Health Treatment Act 1964 Government through the Ministry of Health is separating the Mental Treatment Act (1964) and a new Mental Health, Neurological and Substance Abuse Bill is under drafting. The new bill was drafted in June 2010.(MHU) The findings from the Mental Health and Poverty Projects was that the existing 1964 Act was outdated, hostile to persons with psychosocial disabilities and did not promote and protect rights. 15 MDAC16 did needs assessment in 2010 in Uganda and reported that some provisions of the new Mental Health Bill do not comply with international law. 17 Ghana has the Mental Health Decree 1972
http://www.parliament.go.tz/Polis/PAMS/Docs/21-2008.pdf http://www.health.uct.ac.za/usr/health/research/groupings/mhapp/policy_briefs/MHPB18.pdf 16 Mental Disability Advocacy Center http://www.mdac.info/en/where-we-work/uganda 17 http://mdac.info/where-we-work/uganda
14 15

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There is a Mental Health Act 2009 before Parliament. Currently Mental Health Decree that was passed in 1972 stands. Kenya has the Mental Health Act 1989 The mental health Act is an outdated piece of legislation that needs to be reviewed. Its not compliant with the CRPD and mostly its built on a medical model not a human rights based model. The problem with the drafting of a mental health policy or even reviewing the Mental Health Act is that the process is driven mostly by a group of professional like psychiatrists ,counsellors etc. This in essence means that User representation is very weak and hence building the legislation or policy on a right based perspective becomes a huge challenge. I think for me the key to this is strengthening the User movement so that it can be able to spearhead and contribute significantly in these legislative processes. Based on my experience here the fact is we first need to create awareness about mental illness through a series of strategic advocacy campaigns. Its very difficult to talk about legislation when the public does not even believe that mental illness exists and thats for me is the biggest challenge. Chapter 46 of the Mental Health Act prohibits insurance companies from discriminating Persons with mental illness but the reality of the matter is most of the insurance policies are discriminatory and restrictive in nature.(USPKenya) Much is concurred by International Institute for Legislative Affairs18: In 1989, Kenya enacted its first Mental Health Act, which establishes a Director of Mental Health in the Ministry of Health (currently Ministry of Medical services), a Board of Mental Health and District Mental Health Councils. By 1996, the new mental health officials put through the first national mental health programme of action, covering the next ten years. However the Act is out-dated and requires urgent alignment with relevant UN conventions and National policies and legislation including The persons with disabilities Act, 2003 The United Nations Convention on the Rights of People with Disabilities 2006 The Kenya Constitution 2010 Rwanda has no mental health legislation and but the process of drafting has begun. Zambia: Zambia Mental Disorders Act 1951 MDAC has commented: The Mental Health Service Bill of 2008 is set to be adopted in 2011. This will repeal the Mental Disorders Act of 1951. The bill fails to fully comply with the UN Convention on the Rights of Persons with Disabilities in several important areas including the objective of bill which is to regulate admission, treatment and rehabilitation in mental health facilities without mentioning community treatment, allowing for involuntary admission and treatment, guardianship and custody in managing properties of persons with mental illness without focusing on access to support in managing properties and making decisions when
18

http://www.ilakenya.org/index.php?option=com_content&view=article&id=2&Itemid=73

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needed. Its worth highlighting that the bill significantly incorporate human rights safeguards compared to the 1951 mental disorders act.19 Nigeria: Lunacy Act 1958 At present, the existing legislation dates back to British colonial laws of 1916, later adopted as the Lunacy Act in 1958. The legislative process has not responded effectively to the need for radical reform of the sector. A 2003 bill for a mental health act passed a public hearing and was adopted by the Senate, but was not able to pass the House of Representatives and be adopted into law before the end of the last administration. 20 Malawi: Mental Health Act 1960 The mental health act currently in use in Malawi was drafted in 1960 and is outdated. A draft mental health bill 2004 has been drafted which is awaiting stakeholders consultations before being sent to parliament. MeHUCAM MeHUCAM further elaborates on the issue of Mental Health policy. Malawi had a national mental health policy whose lifespan was from 2000 to 2004. Currently there is no new mental health policy to replace the expired one. General comment on the previous policy is that it looked good on paper with a lot of objectives, activities with time frames BUT implementation of the policy was very poor. Less than 10% of what is in the policy was actually implemented during its life span of 2000 2004. Not even a mental health coordinator was posted at the Ministry of Health to oversee the implementation of the policy nationally. Monitoring of its implementation was not done. Too many activities compressed in a very short period contributed to failure. Another element on policy which is important in the field of mental health is the registration governing procedures and protection of rights which is known as the Mental Health Act. The Mental Health Act currently in use in Malawi was drafted in the 1960s and is outdated. As part of the implementation of the expired national mental health policy, a draft mental health bill 2004 has been drafted which is awaiting stakeholders consultations before being sent to parliament. However since 2004 nothing has been done. South Africa: Mental Health Care Act 2004 Comment: Ubuntu This was drafted before the CRPD was ratified by the SA Government and sections are not compliant with the CRPD.

19 20

http://mdac.info/where-we-work/zambia http://234next.com/csp/cms/sites/Next/Home/5397081-146/story.csp

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Chapter 4 Challenges faced by People with Psychosocial Disabilities in Africa

Introduction Most people with psychosocial disabilities in Africa are at increased risk of human rights violations. Social and environmental factors of poverty and discrimination interact and this leads to further marginalization and decreased access to resources. The Convention on the Rights of People with Disabilities is an international treaty that seeks to promote and protect the rights of all people with disabilities. It is regarded as both an advocacy and developmental tool. The Convention on the Rights of Persons with Disabilities requires a paradigm shift in the approach of many development organizations. The CRPD is a valuable development tool because it lays out measures to ensure that development policies and programs are inclusive of people with disabilities. Development organizations can use the CRPD to catalyze new thinking towards people with disabilities, design inclusive policies and programs, and foster human rights approaches to development that promotes inclusive societies. There exists a paucity of literature or research on the conditions of people with psychosocial disabilities and the barriers they face on the African Continent. However, through the collection of data submitted to the United Nations Special Rapporteur for Disability in response to identifying issues through the paradigm of the CRPD, PANUSP organizations identified the following thematic areas of common concern. 4. 1 Participation of People with Psychosocial Disabilities in Political and Public life

Article 29 outlines the right to effectively and fully participate in political and public life. The International Disability Alliance identified Article 29 as a gateway right in that protection of this right also has a serious impact in the protection of other rights: when the right to vote is taken away, so is the ability protect other rights.21 In Africa, many of the countrys Constitutions exclude the voting rights of persons regarded as living with mental illness. For example in Ghana according to Article 42 of the 1992 National Constitution of Ghana, there is a clause stating: Every citizen of Ghana of eighteen years of age or above and of sound mind has the right to vote. Thus an admission to a psychiatric institution, persons with psychosocial disabilities is excluded both from registering as voters and casting their vote in an election. This also then excludes persons from standing as candidates for election.
21

2011, IDA Submission to OHCHR Thematic Study on Article 29

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In Tanzania, persons with mental illness cannot be registered and participate in the electoral process in Tanzania. Article 5(2) b 22on the voting right of the Constitution of United Republic of Tanzania provides that the Parliament can make a law to restrict among others persons who are mentally infirm to vote. The Electoral Act of a county may specifically exclude persons with psychosocial disability from registering as a voter or voting itself. In South Africa the Electoral Act of 1998 discriminates against people with psychosocial disabilities to register as a voter. However, The Constitution and Mental Health Care Act of 2002 ensure the right to vote and exercise ones right to public and political life. Ubuntu had approached the IEC in 2010 to point out this discrepancy in the legislative framework, yet there remains no response. Generally, people confined to psychiatric facilities are unable to exercise their right to vote. In Rwanda an Order of the Chairman of the National Electoral Commission regulating the disability representation process, bars persons with psychosocial disabilities from participating in the electoral processes.23 In Malawi, the Electoral Act in 77. 3 (a) states: No person shall be qualified for registration as a voter in a constituency if that person is under any law in force in the Republic adjudged or declared to be mentally incompetent Even in countries where persons with disabilities are not legislatively excluded from the electoral process, people in psychiatric institutions do not have arrangements made so as to be able to vote in elections. In Uganda 2011, no formal arrangement where made for people that are institutionalized in the recent elections. High levels of stigma and legislative discrimination are thus the most common barrier to effective participation in political and public life. People with mental illness are sometimes excluded from the disability sector itself. In Uganda, the electoral registration process is free with no stigmatizing questions which lead to discrimination. In Uganda people with disabilities have been given affirmative action and hence their electoral college to elect their representatives in parliament. However, it is reported that the discrimination happened as the psychosocial disability sector were not invited to participate so could therefore not register to stand as candidates. 4.2 Marriage, Family, Parenthood and Relationships

In Africa, the primary support structure for persons living with psychosocial disabilities is the family. Therefore article 23 of the CRPD which articulates respect for home and the family is highlighted. This article also deals with the right to have children, raise a family, and enter a marriage and to have relationships and for women to control their fertility.
22

http://www.issafrica.org/cdct/mainpages/pdf/Corruption/Legislation/Tanzania/Tanzania%20Constitu tion%20in%20English.pdf 23 Rule of the Chairman of National Electoral Commission No. 003/2011 of 12/02/2011

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In Africa, stigma often results in lack of marriage prospects and abandonment and divorce of spouses is common if a psychosocial disability perceived. Children are often separated from mothers if she has a psychosocial disability. Furthermore, women are vulnerable to sexually transmitted infections and violence. There is a lack of support during pregnancy and childbirth. Sterilization is found to be encouraged especially if both partners are users. In Ghana it was reported that finding a marriage partner was difficult and divorce is common place in situations where marriages are already contracted. When people get to know of the existence of a relative with mental illness, prospective suitors avoid that family. Some even go ahead to tell others about the existence of mental disability in that particular family.24 In Tanzania, It is quite uncommon to find the community that believe that person with mental illness cannot have a life partner due to stigma. In many cases the only persons with metal illness found living with their partners are those who acquired the psychosocial disability after marriage. It must be noted that these marriages survive more in rural areas where traditional values still have roots. In urban areas there are a lot of cases where one partner leaves following the illness.25 Tanzania it is commented that: Children of a parent with psychosocial disability/mental illness will remain with one parent and mostly with the mother as there are many examples of fathers running away from families whose mothers suffer from mental illness to marry another woman. The women with psychosocial disability/mental illness are always not supported due to stigma and most families will take away the kids from her and let her roam around the streets. The consequence is that the kids will not benefit from the family properties and will not attend school. There is no government support for the children either. In Uganda: Due to negative attitudes in society of the parents of the bride groom to be suffer a mental disorder they discourage the continuity of the relationship and hinder marriage on basis of psychosocial disability. In most cases when a mother suffers from a psychosocial disability she is denied the right to be a mother by separating her from her biological children. In Malawi: As per custom the parents of both sides have to accept the in-law to be. Usually one who has a record of the disability is rejected by the other family. Such one has a problem even to be in courtship. In marriage it is a disadvantage as the other partner always/sometimes accepts decision of the partner with a disability with caution. Divorce does not benefit in any way the one with a disability and it is even double the pain if the other

24 25

As reported by Mindfreedom Ghana, 2011, UN SR Report As reported by TUSPO, 2011, UN SR Report

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partner is a woman. Conjugal rights are denied to the one with or assumed to be mentally disabled.26 In South Africa it is reported that: there are very liberal abortion on demand laws, which are being often used by social services and service provider NGOs to encourage the abortion of babies of women with psychosocial disabilities. Users are often encouraged to be sterilised especially in cases of marriages between users, as they are made to believe that mental illness is genetically inherited. The separation of mothers from their children was a common theme and it was reported: We have knowledge of many mothers with major mental illness diagnoses, especially in economically deprived communities, having their children taken away from them and being placed in foster care. The SA Federation for Mental Health (SAFHM) and their provincial offices do a lot of work in supporting such mothers in getting to play a more significant role in the lives of there children, who often remain in foster care until adulthood. 4.3 Employment and Income Generating Opportunities

Article 27 of the CRPD obligates the State to recognize the right of persons with disabilities to work and earn an income on an equal basis as others. This is a social and economic right that along with education and health, that could be said to contribute toward the developmental goals of all people with disabilities to have equal opportunities to actualize their potentials and improve the material conditions of their lives. Responses regarding employment revealed that most persons with psychosocial disability were unemployed with little access to income generating activities. This correlates with WHO Report of 201027 that that globally unemployment rates are between 70% and 90%. Often exploitation was experienced and that onset of illness or relapse would result in dismissal. A history of mental illnesses discriminated against access to employment. Even in Countrys where disability legislation encouraged employment of PWD, people with psychosocial disabilities did not benefit. Only South Africa provides a social grant but the amount provided is insufficient to escape poverty. Information from Ghana reports that: No study has been conducted to determine the scale of unemployment with regard to people with psychosocial disability but it can be said that the stigmatization people face permeates all aspects of social life in the formal sector. Indeed employment opportunities in the formal sector remain scarce and far removed from people with mental disabilities. And it needs to be mentioned that those who struggle to get jobs in the formal sector are mostly given menial or less rewarding ones to perform. Termination of employment on the grounds of disability was also documented: It is a common phenomenon in Tanzania that if a public official were to be discovered to have a
26 27

As reported 2010, Mental Health and Development, WHO

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psychosocial disability/mental illness, it would serve as good ground for his or her employment to be terminated. We have knowledge one of a TUSPO client Mrs Jesse Gumbo whose employment was instantly terminated by the Ministry of Education on the first episode of her illness. We are working currently on her case so that she gets her terminal benefits and other rights. High levels of unemployment and exclusion for income generating activities was reported. In Malawi it was reported that: Rarely do we find people with psychosocial disability/mental illness working. Most of them do self help job such as farming and small businesses. Though not known it is commonly understood that if someone is found out to be a person with psychosocial disability/mental illness in the work place, unjustified reasons are created or used for dismissal. This would lead someone to live a life of misery and poverty. It is reported that many are made to perform some odd and menial jobs like carrying refuse to dump sites, carting firewood, running e on foot to distant places. All these jobs often can be tantamount to slavery and exploitation. Legislative frameworks that create employment quotas have been introduced in some countries. An example is Tanzania where the recent persons with Disability Act No.9 of 2010 provides that for any employer with 20 or more employees, 3% of those said employees will be persons with disability. This Act brings a new hope to all other groups of PWD and for persons with psychosocial disabilities. However it is reported that persons with mental disabilities are placed at the bottom of the list of among the group of persons with disabilities and are thus highly disregarded. If they find employment most of the time its odd jobs owing to the fact that many dropout of school when they get a mental challenge. Public services forms request information about past history of mental illness. If one answers it genuinely and by Yes; he/she is not called for interviews and hence no equalization of opportunities. In local communities labelling still goes on hence hindering a person with psychosocial disability to be gainfully employed. Someone paid the same wage but some are exploited by offering to give them food in turn of the work they do. Many times if a person gets breakdown mentally in a work place; he/she loses job with no terminal benefits. People with psychosocial disability find it very difficult to gain skills training because there is no deliberate government plan targeting them. There is no mechanism in place to promote employment of people with psychosocial disability. (TUSPO) Also in South Africa, the SA Labour Relations Act specifies that 2% of the workforce of any company which employs more than 30 people have to be persons with disabilities. Most companies and employers will have a question in their employment application forms asking if a person has a disability. It is reported that: In practice, users have been not disclosing about their mental health problems as they fear discrimination and the effects of stigma. Ubuntu is aware of conditions at some mental hospitals where users are under the guise of occupational therapy been used as cheap labour, and badly underpaid for services rendered, while in hospital.

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4.4

Access to Health

Article 25 of the CRPD obligates State parties to provide health services needed by persons with disabilities with no discrimination and in addition, health services needed specifically for the disability. All health services must be provided with free and informed consent. It was reported that discrimination did occur in the Health Care systems. It was noted that there existed a lack of resources for mental health care especially in rural areas. Often health Care was concentrated in urban area. Free and informed consent often was not provided and all countries allowed for involuntary hospitalization. It was also noted that the vast majority, up to 85% did not seek support of medical services to address their psychosocial disability. This was due to choice and the unavailability of medical resources. Mental Health Care is not prioritized by governments and this leads to extremely poor services. In South Africa, in rural areas would as a first point of entry into seeking support and treatment, in dealing with their psychosocial challenges, go for help to the traditional healer (sangoma/inyanga) in their village. Throughout Africa, it is reported that families and people with psychosocial disabilities seek support mostly from traditional healers and faith based healers. A description of the Ghanaian situation of mental health care services is typical of many countries: Mental health delivery services are concentrated in the three main psychiatric hospitals, all of which are in the southern part of the country in the city of Accra. Therefore those in the rural areas do not have access to mental health facilities and services. Mental health care smacks of discrimination as those on admission are often not given enough nutritious food and often medication is not available. There was a case in 2008 when the hospital authorities threatened to discharge all the patients on admission because their food stock was to low. Good medical care, inadequate staffing and medication are the major challenges the psychiatric institutions have to contend with most. These are brought about mainly because of inadequate funding from the Ministry of Health. It is relevant to mention that the psychiatric institutions are entitled to just 1% of the total budget allotted to the Ministry of Health annually. The resulting implications of inadequate funding are that: Conditions at the psychiatric hospitals are very bad in terms of inadequate wards, unsanitary conditions, inmates sleeping in the open at night thereby exposing them to mosquito bites and other vectors. Currently the Accra Psychiatric Hospital is over populated with patients numbering over 1,000 on admission. Meanwhile the number of beds available is a little above 700. It is claimed that more than 2.4 million Ghanaians live with some form of psychosocial disability but only 20% having the choice of accessing mental health services. There are only 12 psychiatrists in the whole country and this means 1 psychiatrist is to 1.7 million people. There are only 100 community psychiatric nurses (CPNs) located in 70 out of the 170 districts in 33

Ghana. Meanwhile the national requirement for CPNs is 4,000. Clearly this is way below the number required to ensure effective work. Currently there are only 3 clinical psychologists and not a single occupational therapist to provide any skills training that would enable recovered persons to be able to be integrated fully into the society. Of concern regarding reproductive health, is the lack of information provided women and this often intersects with gender based violence. In Ghana: On reproductive health regarding women with mental disabilities, what is clear is that not much support and services from government are available to them during pregnancy and birth. Indeed as far as we know is it the families which come in support especially in cases where such women might have been sexually molested that culminated in a pregnancy. Our study over the past years has shown that most women develop mental health problems due mainly to dearth of information and ignorance on pre-natal and post natal conditions that they undergo. In South Africa: It has been established that women that experience emotional distress after the birth of a child face great stigma in accessing support and that this often prevents them from seeking assistance. Often women with mental disabilities are excluded from HIV/AIDS awareness programs. In Tanzania: Information regarding HIV/AIDS is not available to people with psychosocial disability. Tanzania is among the countries hardest hit by the epidemic; therefore urgent and massive efforts are called for, in order to fight against a national catastrophe Many of the health services in Africa are under resourced and mental health care services are disproportionately affected when countries face economic crisis as evidenced in 2011 in Malawi: Psychiatric mobile clinics are now becoming dysfunctional due to shortage of drugs and fuel for mobility hence worsening the condition of people in the remote areas. Stigma and discrimination still exists in hospitals gauging by the prioritization of hospitals which then marginalises mental health. 4.5 Torture, cruel, inhuman or degrading treatment or punishment

Article 15 obligates that State Parties must take all measures to ensure that people with disabilities are not subjected to torture, cruel, inhuman or degrading treatment or punishment. Article 16 further obligates that people with disabilities should be free of exploitation, violence and abuse and this includes information to be provided on how to recognize and report. Also Article 16 (3) also states that all programmes and facilities be effectively monitored by independent authorities.

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It was reported that chaining, shackles, tying with rope and various restraints are widely used in community. Many people with psychosocial disabilities are subject to physical violence such as beatings and rape and sexual exploitation of women often occurs. Name calling and verbal abuse is common. In existing institutions, conditions are reported to be squalid with restraints still used with punishment and seclusion prevalent. It is reported that there is no monitoring of psychiatric institutions or places where people are receiving treatment. Instances of violence are not investigated and there are no effective mechanisms of complaint. People with psychosocial disability are often deprived of their liberty based on their disability. In Tanzania person with mental illness are still admitted in wards bed tied up with ropes even at the biggest Hospital of Muhimbili. Other violations often reported are: beatings by traditional healers, being tied up with rope in homes, sexual abuse including rape with the result of unwanted pregnancies. Public name calling and insults are also common. Uganda: In psychiatric institutions the right to freely associate with kinsmen is greatly violated. Abuse of the reduction rooms is also on the rise. Patients are locked up in reduction rooms naked and for long hours not as treatment but as punishment for being either mobile or violent in the general ward. South Africa Many women testify that especially during hospitalisations they had been exposed to human rights violations, which include cruel and inhumane treatment, rape, assault and other forms of abuse. Many reports media reports, including a report by South African Human Rights Commission, have documented the continued use of restraints in hospitals and sexual and physical abuse by staff in SA institutions. In the community, especially in poor areas, women with psychosocial disabilities often become the kept women of gangsters or other dominant male figures in the communities. 4.6 Living in the Community

Article 19 of the CRPD recognizes the right of all persons with disabilities to live in the community. State Parties must take measures to ensure the full enjoyment of equal participation and inclusion in the community.

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In Africa it is reported that many persons with psychosocial disabilities are confined to rooms and out of public view or are homeless and living on the streets. Stigma and discrimination together with poverty are the barriers to full inclusion and participation. Community services and facilities are scarce or not available. This can lead to the breakdown of the family and further marginalization. Ghana: The place where people with mental disability should secure complete and sound support is at the community level. Ironically it is at this level that they are subjected to all manner of bad treatment. We have heard of situations and witnessed some where some persons with mental disabilities were confined to rooms in their houses and hardly brought out. Indeed they are kept out of the publics view because their relatives / friends did not want anyone to see them because they did not want to be labelled in various stigmatic terms. It is said that: Beliefs and cultural practices about psychosocial disability maintain stigma and discrimination. The communities believe that people with psychosocial disability are useless or helpless which is clearly indicated in the derogatory labels like the word Zonto or Mawaya meaning that some wires have been disconnected. Beliefs and cultural practices vary towards people with psychosocial disabilities varies. Some of these practices can segregate and exclude people. For example, in Ghana, there are some areas where a person with mental disability (if known and visible) is not allowed to enter a chiefs palace or shake hands with any of the chiefs elders. South Africa: People with psychosocial disabilities in SA still suffers great violence, stigma and abuse in the community. The belief that a person goes mad as a punishment from God for sinning is very common. 4.7 Access to Justice

Article 13 of the CRPD obligates State Parties to ensure that there is effective access to justice for persons with disabilities. To ensure this, State Parties must promote appropriate training or those working in the field of administration of justice, and this include police and prison staff. It was reported that Police and Judiciary are also not free of stigma and discriminatory practices and may prevent access to justice. In Ghana: When a crime is committed against a person with psychosocial disability, and this gets to the attention of the Police, criminal proceedings are instituted against whoever did that. However on some occasions, because of certain beliefs and prejudices, such cases are hushed or treated with contempt. In other words, justice is not seen to be done in such circumstances. There are many reports in Africa of people with psychosocial disabilities that are attacked and chased from their communities. In Uganda it is reported that: The police are insensitive to the needs of persons with psychosocial problems. Many times they have been called to rescue a

36

person from being harmed by the community but the response if that they lack fuel in their patrol vehicles yet if called on an accident scene they rush immediately. This is compounded by the lack of awareness training as Malawi reports that: No members of the police, prison and judiciary are trained regarding what a psychosocial disability/mental illness is and the criminal law refers to them as nuisance. Once one is assumed to be such then they are referred to a Mental hospital for review/tests Once referred for psychiatric examination it is reported that: sadly, that many persons sent for psychiatric examination from the courts are left to the system as no follow-up are made to ensure that they are brought back for continuation of prosecution or released to their families because of their conditions. Currently there about 250 such persons at the Accra Psychiatric Hospital who have been abandoned there despite the examinations completed on them with different reports. In Uganda people with psychosocial disabilities cannot participate in legal proceedings: The justice system still needs a lot of awareness raising because they still consider persons with psychosocial disabilities as people with unsound mind so they are not allowed to give evidence as potential witnesses. 4.8 Conclusion Further issues raised of concern related to rights of persons with psychosocial disabilities in Africa that have a direct impact on the promotion and protection of rights are: Generally, in Africa there is a limited awareness of rights of persons with psychosocial disability. This weakens the rights demand for implementation of existing protective mechanisms. While many traditional treatments are useful, many traditional beliefs and practices are stigmatizing and harmful with an emerging link between psychosocial disability and witchcraft. 80% or more of persons with psychosocial disability in Africa are reported to seek support outside of the western medical model in traditional healers or faith based practices. There is a growing divergence of the urban/rural belief systems Mental Health Care Services are concentrated in the urban areas with little access in rural areas with little other support services. Psychiatric institutions and practices in Africa are characterized by being extremely under resourced with torture, abuse and inhumane practices and discrimination within health care systems. The few psychosocial disability rights defenders in Africa are often marginalized by the disability sector itself and are thus further weakened Most Mental Health legislation, where it exists, remains entrenched as designed by colonial authorities. It is not prioritized by governments with little awareness that it must be CRPD compliant

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Chapter 5 Towards Strengthening the Pan African Network

An International Congress was held 13 15 October in Cape Town, South Africa where the Pan African Network of Users and Survivors of Psychiatry were given extensive training. This lead to informed deliberation of the importance of the United Nations Convention on the Rights of People with Disabilities (2008) and mental health reform on the African Continent. Delegates from 10 African Organizations representing people with psychosocial disabilities from East, West and Southern Africa gathered together to debate the challenges and issues facing one of the most silent and marginalized voices on the Continent. This heralded a revival of the Network that had faced challenges in accessing resources and needed to establish a viable working forum that would take forward advocacy for people with psychosocial disabilities on the African continent. A strong voice that would lift the veil of silence and invisibility was pursued. During the 3 Days, delegates were trained on Human Rights and the International Treaties so as to inform their debates and plan strategies. (A narrative of the training, events and inputs will be outlined in Chapter 6 and describes the revival of the Network.) The name of the organization was changed to The Pan African Network of People with Psychosocial Disabilities as recognition that users and survivors of psychiatry does not adequately reflect representation and the lived reality of this voiceless group in Africa. The Congress culminated in the Cape Town Declaration of October of 2011 which was read at the Second Summit of the Movement for Global Mental Health (Cape Town, 17 October 2011) and the World Congress of the World Federation for Mental Health (Cape Town, 18 21 October 2011) : We recognise that people with psychosocial disabilities have been viewed in bad ways, with derogatory words being used to describe us such as mentally disturbed, having unsound minds, idiots, lunatics, imbeciles and many other hurtful labels We are people first! We have potentials, abilities, talents and each of us can make a great contribution to the world. We in the past, presently and in the future, have, do and will continue to make great contributions if barriers are removed. We believe in an Africa in which all people are free to be themselves and to be treated with dignity. We are all different, unique and our differences should be appreciated as an issue of diversity. We need all people to embrace this diversity. Diversity is beautiful.

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There can be no mental health without our expertise. We are the knowers and yet we remain the untapped resource in mental health care. We are the experts. We want to be listened to and to fully participate in our life decisions. We must be the masters of our life journeys. We want, like everyone else, to vote. We want to marry, form relationships, have fulfilled family lives, raise children, and be treated as others in the workplace with equal remuneration for equal work. For as long as others decide for us, we do not have rights. No one can speak for us. We want to speak for ourselves. We want to be embraced with respect and love. We are deeply concerned about the extent of suffering experienced by our brothers and sisters on our vast continent. Poverty, human rights violations and psychosocial disability go hand in hand. We know that there can be no dignity where poverty exists. No medicines or sophisticated western technology can eradicate poverty and restore dignity. The history of psychiatry haunts our present. Our people remain chained and shackled in institutions and by ideas which our colonisers brought to our continent. We want everyone to acknowledge their participation in calling us names and treating us as lesser beings. These are the barriers to our full enjoyment of life. These barriers are disabling us and these prevent us from fully participating in society. We wish for a better world in which all people are treated equally, a world where human rights belong to everyone. We invite you to walk beside us. We know where we want to go.28 The Declaration is a call for the full inclusion and participation of persons with psychosocial disabilities in determining their life journeys and for the end of discrimination and human rights violations on the Continent. It recognizes that the alleviation of poverty is inescapably linked to the dignity of people on the continent and their mental well being. The Mission and the Objectives of the Pan African Network of Persons with Psychosocial Disabilities were redefined and ratified in a Constitution and are as follows: The Pan African Network of People with Psychosocial Disabilities is established as a Continental organisation to represent the legitimate voice of people living with psychosocial disabilities in Africa. It aims to increase continental solidarity amongst organizations that promote and protect the rights of people with psychosocial disabilities.
28

See Appendix 3 for French translation

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The organisation will seek to achieve the following objectives pursuant of its mission: To ensure that member organisations work towards improving the quality of life of people with psychosocial disabilities in Africa so that they may reclaim their dignity and achieve equal rights and opportunities; To function as an advocacy mechanism that is dedicated to social justice, human rights, empowerment, social development and full participation and inclusion of all people with psychosocial disabilities in Africa; To promote the establishment of national organisations and to support and promote their work and that of existing member organisations; To network and build relationships with other civil society organisations, intergovernmental organisations, regional bodies, governments and other relevant institutions and individuals to further its mission; and To be an African forum and network for the exchange of knowledge, raising awareness and the promotion of research regarding psychosocial disability. A new Board was elected to take the Pan African Network of People with Disabilities forward. The newly elected Board as of 2011: Chairperson: Vice Chairperson: Secretary: Vice Secretary: Treasurer: Ordinary Member: Ordinary Member: Ordinary Member: Ms Robinah Alambuya (Uganda) Mr Bernard Akumiah (Ghana) Mr Action Amos (Malawi) Mr Mwape Mulubwa (Zambia) Ms Annie Robb (South Africa) Mr Sam Badege Ntazinda (Rwanda) Mr Eliezer Mdakilwa (Tanzania) Mr Kanyi Gikonyo (Kenya)

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Chapter 6 A Narrative of the October 2011 Revival

Delegates met for 3 days and received training and discussed the implications of the training for the Continent. The events were documented and daily updates were disseminated via the web. What follows is the narrative of the content the training schedule (see Appendix 5 for Seminar schedule): 6.1 Day One 13 October 2011 Thursday 13 October 2011, was the first day of the PANUSP seminar called Strengthening the Pan African Network of Users and Survivors of Psychiatry for the Realization of the Rights of Persons with Psychosocial Disabilities on the African Continent. At 9.00 we were welcomed by Moosa Salie from World Network of Users and Survivors of Psychiatry and Ubuntu, South Africa (the hosting organization). The opening speech noted the following: PANUSP started organizing themselves in 2005 by sharing experiences and expertise. Now, several years later PANUSP is growing and developing further into an entity with a level of excellence. The next 2 weeks, Cape Town will be the stage of several important conferences regarding mental health and human rights, such as: The World Mental Health Congress next week, where professional caregivers will share their views and The conference of the Network of African National Human Rights Institutions (NANHRI) of which the theme is the Rights of older Persons and Persons with Disabilities. But the users need to have a strong voice too, and organizing a PANUSP network event for strengthening user/survivor organizations was a logical step. So the next 2 weeks Cape Town will be a microcosm for international human rights for users and survivors of psychiatry. The goals of the PANUSP conference are: serious empowerment of the user movement throughout Africa, by education and increase of knowledge on Human Rights advocacy. The next 3 days an educative training is offered to strengthen the user/survivor organizations throughout Africa. Gabor Gombos, special guest and member of the CRPD Committee, gave an introduction where he noted: Capacity building is a tool, not a goal. Its very important to learn to use the capacities that are present. Users and survivors are experts and a true resource of wisdom. At the conference we will not be teaching each other, but rather sharing information, and we hope to become wiser and be able to bring real changes.

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PANUSP is the second regional user network that is formed around the globe. The European Network (ENUSP) was the first regional network and that started in the late 80s. First ENUSP started in the North West of Europe and then a bit later East Europe joined. That is what made the European movement become more diverse. They were broader and richer on information, and capable to bring real changes to policies. So this PANUSP conference is a very important meeting for building capacity in order to bring change in the situation of users/survivors of psychiatry in the African continent. Changing policies is a political issue, and abstract norms of caregivers and professionals need to be translated into life experiences to create understanding and awareness of what this really means to the life of a user. Therefore it is very important that users organize themselves in networks and organizations, so they can have a voice that has a political impact. This PANUSP conference is meant to have a concrete outcome, which is that user/survivor organizations will be more capable of bringing change. The future is more important then the past. At 9.30, the programme facilitator, Helene Combrinck29, gave an introduction on the CRPD and human rights of persons with psychosocial disabilities.

By learning and understanding the contents of the UN Convention on the Rights of Persons with Disabilities (CRPD), by training to use that information (capacity building), and reflecting on the areas of concern which were identified by the participants prior to the conference, there will be an outcome of strategic priorities at the end of the conference. The objectives on organizational level are about finding challenges in the African continent, prioritizing human rights concerns, building capacity in the existing movement, and using the articles of the CRPD to protect and to promote rights for persons with psychosocial disabilities. Also exchanging information on best practices for social inclusion and participation, consolidating the network by mapping strategy and becoming effective as a platform are main goals.

29

Helene Combrinck is a lecturer at the University of the Western Cape, Law and Disability Policy Unit

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But everyone also has personal objectives, and Helne Combrinck asked us to consider our personal expectations, to be able to evaluate that afterwards. A few random personal objectives were: Ensuring that PANUSP puts a foot down to end human rights violations on persons with psychosocial disabilities, PANUSP builds a credible voice to represent users/survivors. Defining words for us in order to give meaning to psychiatry. Having a clear overview of issues and options so as to strengthen PANUSP. The next step was to reflect on the language we use, and decide whether the terminology is acceptable because many terms are stigmatizing such as the word retarded. We all agreed that language does not really matter, just as long as there are no words imposed on us that we dont like. The definition of our targeted group and the borders of our topics are sometimes quite vague, but we dont have to be precise. We all understand what we mean. We are a room full of experts, all involved in the CRPD, some in drafting it, others in implementing it. So now we will share and learn about the realities of users living in Africa. The question was asked: What are Human Rights? Feedback was as follows: Laws that everyone is entitled to, a set of rules about dignity and peace. safeguards to prevent violations Freedoms, chances, opportunities or what we need as a person to live on this planet. not to be treated like an animal inalienable rights that everyone is born with, inherent to nature Reflection of the needed welfare of mankind. The values of every human being. A set of principles not superficial- but about real human needs, like dignity. The next question was: What do I do with Human Rights? And again everyone was brainstorming and raising aspects: It is good to know that we have rights and actual rules about human dignity, prohibiting other not to treat us like animals. Human rights are an authority, to protect one from violations and to promote awareness, so you can demand your rights. But in another way, human rights do not have to be demanded, because these rights are inherent to every human being. But when someone is violated, then its time to take action and make a demand. Its important to exercise rights, not just demand. We have a responsibility to speak out. Then Helne Combrinck introduced the historical development of human rights. It was after the atrocities of World War 2 and as a response to the violations that world leaders sat down and said: never again. Then a process of writing down the human rights started, which lead to the Universal Declaration on Human Rights, which is still the basis of all human rights laws and all human rights instruments. Human Rights are to be found outlined in United Nations Treaties, in the Constitutions of nation states, in court decisions and various legislation. Also in customary international laws 43

such as the right not to be tortured is widely accepted, and it became a custom, which means there is no more need to say that its illegal (even countries that didnt ratify the Convention against Torture (CAT) are aware that torture isnt accepted and feel somehow obliged not to torture. But sadly torture still exists in several forms, like mental torture (not only physical). At 10.30 Gabor Gombos, as member of the CRPD Committee elaborated on the drafting of the CRPD and key concepts: The developments of international Human Rights instruments were a response to WW2 to make sure the violations wont be repeated. But we know it was repeated in practice. For example users and survivors are violated globally under the name of treatment. It is interesting to take a closer look at why the decision was made that the CRPD was needed, and who wanted this. The users/survivors experiences were clearly expressing that they cannot live equally like others in the community just as persons with other disabilities. Even though other human right conventions automatically include people with disabilities, when assessing the situation of persons with disabilities, there were clearly barriers in practicing inclusion, participation and respecting their human rights. So then it became recognized that the existing treaties did not give enough protection to persons with disabilities. Then advocacy was started to promote human rights for persons with disabilities, and it took two decades to succeed. Countries suggested a proposal to establish a new human rights treaty for persons with disabilities at the UN-Conference of the State Parties, which is a UN meeting with all countries represented, which answered that there already were several human rights instruments, and the fault was probably in implementing those instruments, so they blocked the making of a new convention. In 2001 Mexico came up with a smarter proposal and they did not ask for a new convention. Instead they wanted a committee to consider the option of a new convention, and the Conference of the State Parties agreed on that. Then the Ad Hoc committee had a meeting in New York in 2002 to consider the option of a convention, but only a few states responded and sent the requested web reports. At the second session the Secretary General of the UN encouraged all people and all organizations to submit ideas on how and what a new convention should be like. And amongst others the user/survivor movement seized this chance and wrote text proposals. An Expert Working Group had to review every submission, which comprised 14 persons of which 12 were persons with disabilities, including psychosocial. This is very revolutionary, because this never happened before. Usually the drafts for conventions are made by academics and diplomats who negotiate about the legal framework of human rights. But there seemed not to be much expertise at many governments. Only a few countries submitted proposals and mainly these were short. But persons with disabilities wrote large extended and detailed proposals, which made it clear that they are the experts themselves, and as a consequence it were the persons with disabilities themselves who provided a basis text to guide the discussion. This is very revolutionary, because now the agenda was set by the persons with disabilities themselves (by the working group), and they were no longer in the role of passive comments. This is a massive paradigm shift. 44

Persons with disabilities organized themselves to participate in this process. The states were asked to support a voluntary fund for travel costs of persons with disabilities, and persons with disabilities were more present at the third session. It then took about 5 years to negotiate about the contents of the convention, and then the final outcome was close to the original submission, because the persons with disabilities had a very strong expectation of what and how a convention should address. And while states wanted to keep a narrow definition of disability implying that only a small group will be protected and a lot left out, the persons with disabilities chose a social model instead and stated that disability does not reside in the person and is not to be seen as failing or damaged, but disability is a barrier in interaction from full enjoyment of human rights. The social model approach also enables the civil society to be united again and focus on equal rights. It is important to recognise the motivation for drafting the CRPD. It was the people with disabilities who triggered this convention by speaking out. After the tea break, at 11.00, Helne Combrinck came again to let us discuss in smaller working groups on selected articles of the CRPD and their relevance to Africa. All participants were asked to first read and study the articles to come to a good understanding. And then we should choose one article which is most relevant or significant in our advocacy work everyday. Then we were asked to link the articles to thematic areas of concern, which were already identified by the participants by a questionnaire before the conference started (see Chapter 3) . The third step was to give a summary to the plenary group. The summary of the Areas of Concern as identified before the seminar were: The constitutions of certain countries exclude the voting rights of persons regarded as living with mental illness. Children are separated from mothers (parents) with psychosocial disabilities People lose their employment with onset of mental illness Police need training-awareness raising within judicial system Chaining, shackles, tying with rope and various are restraints used in community People with mental illness are sometimes excluded from the organised disability sector Stigma often results in a lack of marriage prospects Exploitation is often experienced when persons with disabilities do find employment Many persons with psychosocial disabilities are homeless and living on the streets Little government action is aimed at protecting or promoting work opportunities Discrimination is against persons with psychosocial disabilities experienced within the health care system Physical restraints are still used in hospitals; verbal abuse occurs No monitoring or mechanisms of complaint in institutions Abandonment and divorce of spouses with mental illness is common Sterilization is encouraged especially if both partners are users of psychiatry A history of mental illness excludes people from employment opportunities Women with mental illness are vulnerable to sexually transmittable infections and violence

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Lack of resources for the choice of mental health care especially in rural areas and often this is only to be accessed in urban area Free and informed consent to medical treatment is often not provided Punishment and seclusion prevalent in institutions Where people with mental health problems live in the community, they are often confined to their rooms and kept out of public view People left indefinitely to languish in institutions when psychiatric evaluations are ordered by court The participants were divided into 4 working groups, and every group had 3 or 4 articles of the UN CRPD to study. Each working group was supposed to read their CRPD-articles out loud, and make sure that all participants really understood what was said. Then 1 or 2 articles had to be selected, based on which article is most relevant and most significant in our work every day. Then we took the list of Areas of Concern and we had to assess whether each concern was linked to the selected article, directly, indirectly or not. In this way the UN CRPD articles were linked to the situation in various countries. Afterwards the groups came together again, and gave their feedback on their findings. Group 1 with participants from South Africa, Zambia and Uganda selected the UN CRPD Article 14: the right to a free and safe life, because most of the people with psychosocial disabilities are not given any freedom or choices. Group 2 with participants from South Africa, Ghana, Uganda and Tanzania selected the UN CRPD Article 12: the right to equal recognition before the law, because this covers everything: when you are not recognized as a person you are generally excluded from all the other rights as well, such as respect for home and family life etc. Group 3 with participants from Tanzania, Nigeria and Rwanda selected the UN CRPD article 19: the right to live independent in the community, because if you cannot live in the community, you also have no access to health, work or justice. Group 4 with participants from Ghana, South Africa, Malawi and Uganda selected the UN CRPD article 15: the right not to be tortured or treated cruelly, because this is something that happens both at the community level, at homes and by faith healers and also in institutions. They are also denied an adequate standard of living (art. 28). It became clear that all the articles of the UN CRPD are connected to each other. For example, when a person gets chained, it can be considered as torture, but also the right to liberty is violated, an adequate standard of living is violated, and equality with others is beyond reach. All rights are interconnected and

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indivisible and thus it depends on what strategy you choose to fight these injustices. In practical real life situations, people with psychosocial disabilities in Africa are seen as having unsound minds and therefore they cannot sign contracts, making it impossible to work, or to have finances or to access any system at all. Therefore they cannot participate in life equal to others. They are generally disqualified as a whole, in every aspect of life. After lunch, Helne Combrinck told us some more about the implementation of the CRPD, with a National Focus. She reminded us that she had left out some articles in the work group exercise we just had. These were article 5: the right to equality and non-discrimination (which is very much related to stigma), article 29: the right to vote, and article 8: awareness-raising, which means that a country is obliged to take measures for creating public awareness. In this session we will look into how various rights can be used and implemented. The Areas of Concern comprise very real things, and the complexity of everything being linked to each other can make it feel very hard to define what to do, but we need to answer those issues in common sense ways. It is important to identify and understand the rights and to learn how work with them. So we are in the stage of forming ideas for implementation. A practical exercise was done. Helne took us on an imaginary journey, where we were all parliamentarians of this new country called Utopia. We just ratified the UN Convention on the Rights of Persons with Disabilities, and now we need to decide what to do to implement the rights of the CRPD. She asked us what we would do. First, of course, we would read the full text of the CRPD and get training for a better understanding, and then we would check our laws to make sure that there is no conflict of rights in the law. If there were a conflict, we would scrap these laws and make new ones who are in line with the CRPD, to protect and to promote the rights of persons with disabilities in all policies. This is captured in article 4: General Obligations, which contain a list of commitments on gathering information, undertaking research and developments to secure the rights of persons with disabilities in all policies. This includes the private sector as well (4.1.e). So if our national airline company, Utopian Airlines, isnt accessible for wheelchairs, or doesnt allow guide dogs, this is not consistent with the UN CRPD, because it has to be accessible. All inconsistencies must go, and states must take all appropriate measures to conform to the UN CRPD and to refrain from unequal or discriminatory laws, regulation, customs or practices (4.1.b). These laws also would apply for example to the private university of Utopia, where students exams can be postponed during any illness. This doesnt only apply for medical illnesses, but also in case of mental problems the exams should also be postponed. This means that situations where people with mental problems arent allowed to do their exams on the basis of their mental problems constitute discrimination. Article 4.2 further states that States have an active role in achieving progressively the full realization of economic, social and cultural rights, which goes further than just abolishing active discrimination. The absence of wrong doesnt automatically imply the presence of rights. Article 4.3 comprises the States obligation to 47

consult with persons with disabilities on implementation and other decision-making processes on issues that concern them. We were reminded of the slogan of the disability movement: Nothing about us, without us. Article 33 outlines national implementation and monitoring and mentions what structures should be put in place, such as a national focal point for matters relating to implementation and related actions to promote, protect and monitor implementation of the UN CRPD. This can be an independent Human Rights framework (such as national Ombudsman) or an existing national Human Rights Commission, who is already concerned with other human rights. Such organizations may need more education on the CRPD. Also a new body can be appointed. One of the concerns expressed at the PANUSP was that some national human rights organization are using government budgets and government structures, which results in a restricted scope, because they are too dependent on their government. And also we heard of an example in Australia, where the national human rights organization supports the governments reservations on the UN CRPD, which in fact means that this Australian Human Rights Commission doesnt comply with the UN CRPD. That is worrying us. After ratification, the UN CRPD is a part of the law, but that doesnt automatically mean there are no conflicting issues anymore (dualism). We cannot simply rely on the system. Then Gabor Gombos shared the international focus on implementation, and explained to us the role of the Committee on the Rights of Persons with Disabilities: what does it do, how can you help, and how can you use it. The CRPD Committee is an independent body of experts, and 16 out of 18 experts are people with various disabilities themselves. Those experts are nominated by the national governments, which makes it slightly questionable on how independent this body of experts is. To minimize any conflict of interests, the individual experts cannot judge their own country. The CRPD Committee is not meant as a bureaucratic instrument, but focuses on how persons with disabilities can enjoy their rights. The implementation of the UN CRPD is discussed annually at the Conference of the State Parties in New York, with presence of representatives of every member country of the UN. The review by State Parties is done as follows: In 2 years after ratifying the UN CRPD, all ratifying countries (governments) are obliged to have made an initial report, which is published on a website to push governments to comply.30 Those State Reports need to address pieces of the law where the practices are not yet in line with the UN CRPD, and what rules are not compliant. This should be independent and objective
30

See this website for information: http://www.bayefsky.com/docs.php/area/reports/node/2/treaty/crpd/opt/0 ).

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information, but in practice this isnt always the case and there can be a difference in what the State Reports tell, and the lived experience of people with disabilities. Therefore, anyone can submit a Shadow Report. The CRPD Committee will rely on these data just as much as on the government report. All data will be published to come to a transparent and constructive dialogue (data of Shadow Reports will be made anonymous). The CRPD Committee is not a court system, nor a police, but they just want to create a correct understanding of the UN CRPD and want to help and guide the steps that are needed to change non compliant aspects. The constructive dialogue with the State will take one day (6 hours) and is based on questions that are sent to the government beforehand, which contains a list of concerns. The public meeting of the constructive dialogue will be web cast. There have been 2 country reviews so far: Tunisia and Spain. Mental Health has been a significant topic in these discussions. For example questions were: How many people are lacking legal capacity? And in the case where mental health problems automatically lead to exclusion of the right to vote, they asked for a clarification in writing. In Shadow Reports it is also possible to recommend questions for this constructive dialogue. After the constructive dialogue a document with Concluding Observations is made public. In the Concluding Observation first is mentioned on what areas the State does well, as a positive comment. Secondly, concerns of serious conflict are identified, and then this followed by the recommendation, which is legally binding for the State. By reading these Concluding Observations you can learn a great deal regarding the evolving understanding and interpretation of the CRPD. Most governments do not have a full understanding of the UN CRPD yet. Before the CRPD entered into force, exclusion based on mental disability wasnt seen as a violation of human rights. In a way, also on other treaties the understanding isnt always full, such as the Convention against Torture (CAT). The CAT is agreed by all states and is obligatory on everyone, but still there are practices that constitute torture, although they often arent called torture by the official mechanisms. One example is involuntary treatment, which can be torture (with the objective to change someones mind with forceful interventions). For a long time this was said (and accepted) to be done in ones best interest, as a form of care, but since the UN CRPD entered into force this is in fact a violation of the right to legal capacity. The understanding of the CRPD is evolving, and therefore the CRPD Committee is taking small steps in criticizing the States, and elaborate issues one by one to come to a good understanding, because it wouldnt be fair to demand a full change over one days time. One issue that is now being addressed is that the existence of any disability, regardless of the severity, can never be the ground of decreasing human rights. The rule is that all treatments should be based on free and informed consent, which can only come from the person him/herself (not by a guardian or representative). This eventually means that any intervention without free and informed consent is in conflict with the CRPD (unless this

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is disability-neutral, such as life-saving and judicial interventions, but then it is just the same for everyone else), which will be addressed in a later phase. The CRPD Committee also works on General Comments on important issues, to stimulate a good understanding and interpretation on dispute issues of the UN CRPD. A General Comment about Legal Capacity (article 12) will be published in 2012. The UN CRPD Optional Protocol describes ways to monitor the implementation of the rights for persons with disabilities. Individuals as well as groups can submit complaints if they have tried and exhausted all domestic remedies. Then a court decides and gives a binding decision on the State. However, this isnt organized into mechanisms to enforce that. Political activists should see the CRPD Committee as an ally, and use it to promote their activism. If there is no shadow report, the CRPD Committee has to rely on the information from the government. In the spirit of the CRPD the States should include persons with disabilities and consult with them even before their State Report, but in practice this still mainly ignored. There is also a lack of understanding in monitoring, as the history of treaties proves. It is generally seen as paperwork. The State Report is like homework for the governments. They like to create a good image of themselves, instead of assessing the needs of the state and how to comply. But we know that all countries have issues. There are countries where by law or constitution, guardianship automatically leads to losing your voting-rights (even in the case of partial guardianship, such as financial supervision). And all states enable and practice involuntary treatments or confinement for people who suffer from psychosocial barriers, which is contrary to the UN CRPD. Governments will basically only do their duty when they are stimulated to do so. So the political climate needs to change and the stigma on persons with mental health problems needs to disappear. We need support from the mass, and the media. Something worth mentioning is that the former Special Rapporteur on Torture, Mr. Manfred Nowak has written a report in 2008, which is the first document of its kind that states that the so-called medical interventions without consent in psychiatry may amount to torture.31 At 16.00 Helne Combrinck facilitated another session of group work on International and Regional Human Rights Mechanisms. She presented a a case (which she made up) and asked us how to handle that particular situation. The case study was as follows: Elizabeth is a 21-year old Ugandan woman who married her husband, Joseph, two years ago just after her eighteenth birthday. She quickly fell pregnant and gave birth to a daughter;
31

(see Istanbul statement: http://solitaryconfinement.org/uploads/Istanbul_expert_statement_on_sc.pdf )

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somewhat to her dismay, her husband insisted on having a second child immediately afterwards (because he really wanted a son), but the second baby was also a girl. After the birth of their second child, Elizabeth became increasingly tired and listless, and seemed to loose interest in the babies. The family doctor prescribed vitamins, with no effect. Joseph subsequently took Elizabeth to see a traditional healer, who suggested that she may benefit from a stay at a nearby prayer camp because he concluded that her condition was the result of bewitchment. This prayer camp was managed by a Christian organization and had reportedly achieved great successes in healing through prayer combined with traditional healing methods. When Elizabeth had been at the camp for two weeks, her cousin Ben, who is studying in Kampala to become a psychotherapist, heard about her situation and came to visit her. He was shocked to see that she had lost a great deal of weight, and the camp managers complained that she was refusing to eat. He found her alone in a locked room, lying on the thin reed mat that was used as bedding, and she would not speak to him or make eye contact. The only sound that he could her from her was soft humming, which went on without variation during his whole visit. However, when Ben started to get up to leave, Elizabeth became very agitated and held on to him, tears flowing down her cheeks. She still did not say anything. Ben, very upset, discussed the matter with Joseph, who said that according to the camp managers, Elizabeth was making good progress and a break-through was expected any day now. Then she would not only be able to come home, but they would also be able to extend their family to have the son they both so dearly wished for. He refused to consider the possibility to fetch Elizabeth before this break-through occurred. It was clear to Ben, with his limited medical knowledge, that Elizabeths condition was in fact critical: she was badly dehydrated due to her refusal to eat and urgently needed medical care. Her other problems, most likely untreated post-natal depression aggravated by the isolation at the prayer camp, also needed care. He therefore contacted a friend of his, Frederick, who worked as a legal aid lawyer, to assist Elizabeth. Frederick brings an urgent application to the Supreme Court of Uganda (SCU) to have Elizabeth released from the prayer camp and admitted to the nearest hospital. The SCU, however, refuses this, saying that Joseph is effectively her legal guardian. Elizabeth is unable to make decisions for herself at the moment, and Josephs decision about where she must be treated should therefore be respected. Bens effort to intervene through the Ugandan courts is therefore not successful. Where would you advise Ben to go next? Again smaller working groups were formed to discuss this matter. And various suggestions were made.

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Ben could talk to Joseph, and urge him from the bottom of his heart that Elizabeth needs treatment, and even put Joseph to court to dispute if he is even capable of being the legal guardian. Or maybe the community can be mobilized, or a facebook campaign to make use of group pressure, but that could maybe have negative effects to Elizabeths social position, due to the stigma related to bewitchment. Ben could lobby with the camp owners for release, because Elizabeths life is at risk, and as a fact the camp owners generally dont want to harm Elizabeth (change is possible). He could also try to find a local diplomat, include Josephs best friends and family or find a strong network organization, for example for womens rights. Another option would be to go to the Ugandan Human Rights Commission or the African Commission on Human and Peoples Rights, or the Commission for Elimination of discrimination against Woman (CEDAW) or FIDA. Ben could also try to go to the Committee for the Rights of the Child, because Elizabeth is also separated from her children. But of course those procedures do take quite some time. There was much discussion as to the various options and it became clear that solutions are not easy to find and that the country and community context needs to be considered carefully when addressing the issue. The day ended at 17.30. 6.2 Day 2 On the second day of the PANUSP conference, 14 October 2011, started at 9.00 am again. First Helne Combrinck gave a short overview of what was discussed the day before and gave a preview of todays topics. Yesterday we had explored the Convention on the Rights of Persons with Disabilities; looked into different rights and how it can be used, and we have also matched it to the concerns. Today we will see what we can do, what are the options; we will develop strategies and look into mechanisms and advocacy. At the end of the conference we want to have an Action Plan for PANUSP that is workable regarding resources and circumstances. At 9.10 there was a block about Mental Health Legislation in Africa, facilitated by Allison Hillman and Gabor Gombos. First we will gather some more insights in Mental Health law reforms in Africa, by presentations from various participants, and then Gabor will tell some more on the common background. Dan Taylor gave a presentation on Mental Health Law reform in Ghana. In 1888 the British brought the Lunatic Asylum Act to Ghana, and under that law the persons with mental problems were arrested and treated like prisoners. In 1906 the Mental Health hospital in Accra was built as an asylum to house people with psychosocial disabilities with prison wardens in charge. In 1972 the Mental Health Decree passed, and in 1996 attempts were made to amend this law. In 2004 the Mental Health Bill was drafted, and completed in 2006. This bill is currently waiting for discussion in Parliament. The Mental Health Bill is said to have a human rights-approach in accordance with international agreements for mental health care needs, and contains provisions for proper treatment, privacy and autonomy, confidentiality, information, free movement etc. However, the bill will enable police assistance

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in situations where mentally ill persons are let loose on the streets and communities. Involuntary treatment will still be possible, so the human rights-approach is questionable. There will be a Mental Health Authority to promote humane care including treatment and rehabilitation, and a Mental Health Review Tribunal for reviewing complaints and appeals against involuntary treatments, having the power to direct discharge of people who are detained under the Act. There will also be a Visiting Committee for inspection of the institutions. Mental Health Service will operate independent of the Ghana Health Service, and will get 8% of the overall Health Care budget. Seclusion and restraints need to be monitored under this bill. The second presentation came from Mwape Mulubwa from Zambia: In Zambia, mental health care is arranged in the current Mental Disorders Act from 1951, which advocates for detention in institutions, such as asylums and prisons. The Mental Disorders Act is more a human rights violator than a protector for the human rights of persons with psychosocial disabilities, and also uses derogatory words like imbeciles and idiots. There is only one mental health hospital in Zambia, so especially in rural areas this is out of reach. Also there is an absence of organized community based mental health care. So most of the population goes to traditional and faith healers. MHUNZA, the user organization of Zambia, was involved and consulted in the mental health law reform. In 2010, the Mental Health Bill adopted a human rights approach in line with the UN CRPD, and this has been sent to line ministries for comments, before it goes to the Ministry of Justice for drafting. The last week of October MHUNZA is engaging the drafts men with the aim of lobbying them to speed up the process of drafting so that it can be taken to parliament for discussion in parliament. Parliamentarians have been engaged already through a one day workshop for parliamentarians on the need for a new mental health law with a human rights approach, in order to stimulate a positive outcome of the debate on the draft law in parliament. Then Daniel Iga from Uganda told us about the mental health law in his country: Uganda has a very old Mental Health law, dating from 1938, and revised in 1964, with unfriendly words like lunatics, imbeciles and so on to describe people with mental illness. It is non-Human Right-compliant. Especially user involvement, active participation or consulting is not in the law, which is concerning. This old law is promoting guardianship, and has a medicalmodel-approach. The life after institutionalization is not addressed. This law is so old, that in 2008 a Mental Health Policy was made, which is used by mental health services, but that policy is not legally binding. There is a need to reform the mental health law. The Mental Health Department is currently reviewing this law and drafting a new bill, and has put in place a drafting committee in which the user movement is involved by selected representatives. The title has been changed from Treatment Act to Mental Health Act, and respectful language is now used that promotes dignity of users. The law is being made CRPD-compliant, instead of MI principles (which are WHO guidelines from the 90s, and which are outdated since the entry into force of CRPD). The 53

new law comprises a holistic approach and multidisciplinary mental health care including the role of peer support groups. Also rehabilitation and reintegration into the community after the mental hospital is now being addressed. Also representatives from Tanzania and Malawi gave their responses: Tanzania has ratified the UNCRPD in 2009. In 2006 a Mental Health Act was drafted, and in 2008 the Mental Health law passed, but the civil society was not involved, only one person from an NGO. The review by Disabled Persons Organizations was also not involved, but however they are a bit satisfied with the substance of the law, because it is in common with the UNCRPD. The fact is that if the doctor says you are not okay, then you are not allowed to participate, and the officials do not understand that mental health is not static but dynamic. Also there is a problem of regulations mandate, which is government-driven and doesnt function well. Mental health gets over 1% of the health budget, of which most goes to psychiatric drugs, only available in the hospitals, at a big distance of most homes. Action Amos gave a short reflection on the situation in Malawi, where they are still running on the Mental Health Act from 1948. The situation is like Uganda, which was also a British colony in the past. In 2000 there has been made a Mental Health policy that expired in 2009. In 2004 a new Mental Health draft Bill was made, but it hasnt moved since then. This bill is governmentdriven and there is no user involvement. In 2010 the mental health users and carers organized a movement, and had persons from Kenya, Uganda and Zambia over for a visit. Allison Hillman concluded that all countries have a separate Act for Persons with Disabilities and a separate Mental Health Act. After the tea break, at 11.00, discussion continued on law reforms. Gabor Gombos lead this discussion. Gabor posed the question: Law reforms are on the agenda in every country, and governments are trying to bring their laws in line with the UNCRPD. But what does compliance with the UNCRPD mean? Article 12, Legal Capacity, is the key article of the Convention. Several people may say that legal capacity is not identified as a prior issue, but it is the major issue. Users need to be seen as equal human beings in order to have equal human rights. When persons with mental illness are taken to a psychiatric hospital, they almost automatically lose their rights. They are treated involuntary, meaning against their will, and without informed consent (art. 25), which is a violation of human rights, as is put in the UNCRPD. Also voluntary treatment without information means there is no informed consent, or when users are given no option to chose (only the choice to agree). You could simply ask yourself: what happens when I say NO. Article 12 (legal capacity) is closely related to article 25 (informed consent). And informed consent can only be given by the person him/herself, so that means that no guardian, spouse or 54

friends can decide for another person, because that is not what is meant by informed consent. Also article 14, right to liberty implies that a person cannot be forced into any facility, including psychiatric hospitals, or outpatient services. So far there is not any government that really understands that the existence of a disability can never justify taking away someones rights. Most government think they are compliant because they take away those rights not only or solely on the basis of a disability, but they also include other criteria, such as dangerousness, lack of capacity, but those are often all disability criteria. The CRPD committee is very clear on this, that using those disability-linked criteria is not compliant with the CRPD standards. Any disability based deprivation of liberty, or even is disability is a factor, this is a violation of the CRPD. Disability cannot be mentioned or linked, or play a role in judging. It should be only the criteria of danger (disability-neutral). Governments need to be made aware of this interpretation. There is no law in the world that is compliant (yet), so there is no answer yet. So what the UNCRPD means in terms of positive rights is yet unknown, so far only the negative rights have been addressed (that means what can NOT be done for compliance). So reforming laws by copy-pasting what progressive and advanced countries do is not the way to go. Also, explanation is needed on article 14, right to liberty and security of the person and 17, physical and mental integrity of the person. Involuntary treatments are prohibited mainly on the basis of article 17, integrity, rather than article 14, liberty. Article 17, integrity, is an offspring of the anti-torture framework, and torture and ill treatment are absolutely forbidden: every person has the right to integrity no matter where you are. While the right to liberty isnt absolute, and there can be justifiable grounds to deprive someone of their liberty (such as within the judicial prison system). The CRPD says that all treatments should be based on informed consent by the person, but it does not say that all involuntary treatments are forbidden. If there is a situation when a person is to be treated without consent, this should be the same for people without a disability. For example: diabetics can be treated without informed consent when they are in a coma, then it is a life-saving treatment. That is claimed as a treatment in their best interest. But treating them without informed consent before they are in a coma would be a derogation of existing rights. That cannot be justified. But when persons with mental disabilities are treated against their will, this is very, very seldom a real life-saving intervention (we are the experts ourselves). And treating someone against their expressed will when their life is not at stake is an abuse of force, which is illegal and unlawful. Forced mental health interventions are typically done because the persons with mental problems are seen as too crazy and not sound of mind. But what is a sound mind? People who are seen as having an unsound mind are temporarily treated as less than a human. The CRPD clearly states that even people who would have an unsound mind are people too, and they are entitled to have human rights too.

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The CRPD committee has already done a lot of important work by addressing the negative rights (what can not be done), but the governments still do not understand the positive rights. Its not the CRPD committees task to prescribe how these rights should be carried out. It is the task of each government, to make laws that fit to the situation in their own countries. User/survivors must play a substantial role in answering these open questions. Often the user involvement is only tokenistic, but the users should have the most important expert voice. For user movements it is therefore important to be well prepared as an expert, ready to be actively involved and consulted and to demonstrate positive rights. That is why we need to spend time on capacity building and defining a strategy, as what we are doing now. Mental health care is not only about having resources. Also in rich countries, like Hungary, the situation is very sad. People are chained and caged in facilities, and this is backed by the law, and not seen as unlawful by the government. This also means that regional lawsuits generally do not address this as ill treatment, but still find it medically justifiable. For torture in traditional healing centres this might be the same, and the involuntary treatments, chaining and shackling may not be recognized as ill treatment, but justified by the community and the governments on various grounds, even while this is not. It is important not to advocate for the allocation of torture, and basically move the forced treatments and restraining from traditional healing to professional institutions, which seem to think that the persons with mental problems are so crazy that they need to be saved at any cost, even by using force at large. Some professional protocols obligate the use of force, and there must not even be danger (such as the administration of anti-psychotic drugs during a psychosis, when not administered this is called negligence) What are needed are awareness, training and change. Alternatives must be found. We know that mental health care isnt innovative of their nature, so they need to be pushed by user movements, laws and the public opinion. There are some evidence based good practices, such as peer support, Soteria-projects, the Open Dialogue for schizophrenia (Finland) and the Eindhoven Model (Open Mind Support group). The resources that are needed are not professional psychiatrists, but trained intensive centres that focus on people. It is important to identify the existing resources that are there. If traditional healers are the existing resources, it is important not to prohibit or execute them, but to advocate for compliance with the CRPD. The western alternatives are developed under the despair of users, family and also some professionals. The resources are clearly found in the lay of people in different circles around a person. The question is: Who can be valuable to support people, or this specific person, and what makes an important contribution to the wellbeing of the entire population. The CRPD is not against mental health care, but sees mental health in a much wider view, as an important value for all, going beyond those who are already dealing with an ill health. Mental health is important for everyone. And the existing lay of resources should not be underestimated. The existing resources need to be identified, and then questioned what is 56

needed for capacity building, regarding the real needs of users (which are not forced treatments or medication alone). But if medication is a real need, then this should be made available. However, the decade of the brain has expired. Drugs were not a true solution. Schizophrenia hasnt been resolved. The real needs for psychosocial rehabilitation and psychosocial recovery are mainly social needs. The comprehensive laws and policies from the CRPD do not focus on treatments, but are based on social needs. International cooperation is needed to identify useful resources. The pharmaceutical industry will be happy to sell their drugs in Africa, but beware that this can become an enemy, because it doesnt address the social needs on the long term. There is growing awareness on other resources, social human resources, also not just regulation. And also what is happening at the PANUSP conference is a way of international cooperation, with the use of international and intensive grassroots support, such as participation from various countries, and even from beyond Africa by Gabor, Jolijn, Eyong and Allison. This is not traditional, but a new good practice. Allison summarized what just had been said into 3 main points. 1. In many mental health laws and reforms persons with mental illness or disabilities are seen as special populations. And the OHCHR is very clear that separate laws for special populations are discriminatory. Mental health is important for all of us. Everyone has the right to mental health. Mental health laws should detain the highest level of mental health for all people, not just people with a diagnosis, so mental health laws should apply to the entire population. Mental health is to be a part of primary health care, because mental health is a part of a persons health (holistic approach). If there are separate laws for this segment, then these laws should apply to all of us, which is different from the situation as it is now. We have to look at the causes and roots of emotional distress and human responses to that, which the care sector diagnose as illnesses, like schizophrenia, depression and bipolar. These mental illnesses or severe psychosocial barriers do not fall right out of the sky. Our experiences tell us that it originates in a set of factors that contribute to developing such a response, like relationship dynamics, loss, and unemployment and so on. It is not just a medical issue, and no pill or psychiatry has been able to solve it. We have to identify the mental illness, and address that we are being human and that our operational capacities are taken away from us. We must also find out what resources are needed to recover, such as social and economic relations, access to employment and so on. The budgets for mental health care in Africa are increasing, and 10% of the national health budget should go to mental health. But what will the governments do with that? Will they build more institutions, hire more psychiatrists and dispense more psychotropic medication? Or will they invest in a holistic approach where people are not 57

2.

3.

just patients, but persons, and look at the root causes? We have to ask ourselves what is needed in times of acute emotional distress. In addition, it was said that we all know the WHO Global Action Plan (GAP 2001) called Closing the Gap, which has a list of 10 issues that the WHO considers as a priority. One of the priorities from the GAP-programme is that psychotropic drugs should be made more available in developing countries. Also a lot of country governments still think in terms of the MI-principles (WHO guidelines from the 1990s, which were outdated the moment the CRPD entered into force), but when we requested new guidelines in line with the CRPD, the WHO says they have no money to draft these new guidelines. So we often question ourselves what role the WHO has in realizing the CRPD. Mental health is hard to define, and even general health is hard to define without using medical language. We have to unpack the issues and find a match on the ground. Most of the mental health bills should better be called mental medical service bills, and we have to question ourselves: do we want that, do we want medical services? Psychiatrists are paid by tax payers money. We should get people aware that foreign aid and psychiatry doesnt come for free, but actually it is our fellow citizens money we are spending. How much benefits will come from one more psychiatrist? And how much benefits will come from a workshop of 200 willing people? Its your own money At the World Congress of the World Federation for Mental Health (the Global Summit) there is a campaign that is called The Great Push, which is about more investment in mental health care for developing countries. The concept is rather vague, and it doesnt say whether this is based on the Human Rights-approach. Actually they mean: more investment in the psychiatric medical model, with more medication and more institutions. This is easily misunderstood. Doctors are trained in the wrong way of thinking. The carers are lost and they dont know what to do. We need to speak out and clear up the vision. We are not less powerful, we can speak with dignity. It is our job to make a statement. It was already past 12.30, so it was time for another delicious lunch at the restaurant across the street. Guests from the South African Human Rights Commission joined us for lunch. South Africa has ratified the UNCRPD and the guests were experts, advising the government on implementation of the CRPD (See Chapter 8). They came to intensify the relations with the user movement. Right after the lunch we had to rush back into the conference room. The discussion on law reforms had taken way to long, so the programme had to be rescheduled. So directly after the lunch, at 13.30 Helne Combrinck gave her belated introduction to article 29, the right to vote. One way, probably the oldest way, to change the law is by changing the people who make the law, and putting other people in place who are responsible for the laws of a country. This means voting and political involvement. The CRPD article 29, the right to vote, is therefore very important and linked to law reform. It is also linked to article 12, legal capacity, which is the 58

right to make decisions, such as decisions about property, where to live and with whom, to sign contracts and so on. When persons are denied this right to choose, this is basically done because there is no trust in these people (which is nonsense). Every person has the right to legal capacity and the right to participate in public and political life. Article 29 is a consequence of article 12, just like all articles. The legal capacity of every person has to be recognized, which is an issue related to discrimination and equality. Just as many articles in the UNCRPD, article 29 states that people have this certain right on an equal basis with others. That is the equality component. With the adoption of the CRPD there have been debates about whether the CRPD focuses on equality (just like the Convention to the Elimination of Discrimination against Women - CEDAW) or whether it has focus on a substantial, specific rights. In fact the UNCRPD is a combination of substantive liberty rights and the equality basis. Article 2 of the UNCRPD gives the definition of discrimination. The definition on participation in political and public life (article 29) is based on 2 important aspects: A. the right to vote and to be elected, which is a duty of the states and is explained in 3 sub-articles, and B. Actively promote an environment that enables participation in public affairs without discrimination, with again 3 sub-articles. States must first ensure that there is an appropriate legislation on voting and elections, which is easy to understand and used. Such as anonymous voting without intimidation, and guaranteeing free expressions. In some countries having a safe participation in voting and elections on itself is already a big challenge (intimidation), and especially people who need support in voting (for example blind people) are extra vulnerable. In Zimbabwe, a country known for harsh election-violence, blind persons were obliged to have their ballot filled in by the police. By now the Supreme Court has granted an amendment which enables blind people to choose a person of their own preference, a person who they trust, who can support them by filling in their ballots. This is in line with the UNCRPD. In Ghana there is this issue about soundness of mind and next year there will be elections. So they are raising the issue on who judges who is sound and who is unsound of mind, and they have asked the psychiatrists to declare users as sound, in order to register users to vote. But the court said there are no means to vote, while prisoners have the right to vote in the prison yard. So the user movement in Ghana is now advocating enabling voting inside institutions, the same as in prisons. The participation of users in political and public life is a duty of the State, to link up with the obligations of the UNCRPD. And NGOs, organizations or business can only stimulate that. The right to vote is a big issue. There was no time left for doing the group work for the OHCHR Thematic Study on Political Participation, which will now be an assignment for tonight for all participants. Then Eyong Mbuen, a legal officer from MDAC told us about the case of Kiss versus Hungary at the European Court of Human Rights. This case was done by MDAC: Mental Disability 59

Advocacy Centre, based in Hungary. MDAC is an international Human Rights organization who advocates for the rights of persons with psychiatric disability. Mr. Kiss, a 51 year old man from Hungary was excluded from the right to vote, because he was placed under (partial) guardianship, and guardianship, whether partial or full, implies automatically the loss of voting rights under the Hungarian Constitution. Mr. Kiss however, wanted to vote. In 2006 there were elections, but Mr. Kiss appeared not to be on the list of people who can vote. He first went to district court, which said that the Hungarian law wasnt violated, and Mr. Kiss had to accept his position. Then Mr. Kiss went to MDAC for legal support and in September 2006 they filed a case to the European Court of Human Rights. First the European Court dismissed the case, because the domestic remedies were not exhausted in their opinion, but in a second consideration, urged by MDAC, the European Court decided to accept the case, since it was about the Hungarian Constitution that violated the protocol of European regulation on the right to elections, and it was likely that Mr. Kiss wouldnt have a fair chance to win this case in Hungary on his own. As a first response, the Hungarian government answered that the right to vote isnt absolute, and it can be limited for people who dont see the consequences of their behaviour, for that same reason children cannot vote, referring to psychiatric patients who are seen as having an unsound mind. At first the European Court tended to accept that. But Mr. Kiss, represented by MDAC defended himself, saying that he understands that the government has a duty to protect people, but not ALL of the patients are incapable of voting, and the Hungarian court does not assess mental or voting capacities, so they cannot say that all of the patients are incapable of voting. Then the European Court of Human Rights concluded that indeed the Hungarian constitution cannot categorize that all of the persons with mental and intellectual barriers are incapable of voting, and decided in 2010 that Mr. Kiss was right in this case, meaning that the categorical exclusion of persons with mental disabilities from the right to vote was unacceptable. The impact of this case will be mainly on the long term, but the decision benefits all persons who are under guardianship. This was a strategic case from MDAC, who is happy with this result. Disability can be no reason to deprive someone of the right to vote, (only age or nationality can be a valid reason under the Venice Commission). Voting is a legal aspect of life, linked to legal capacity and making decisions independently. People who are seen as unable or incapable to vote need support, and measures have to be taken to ensure and enable that everyone can exercise their right to vote. In fact, only willingness to vote can be seen a criterion to define if people can or cannot vote. Voting is an individual decision, and would need an individual assessment on capability, with objective and reasonable reasons to deprive someone of their right to vote, but the right to free elections, with no manipulation and the right to free expressions basically implies that this is a non-discussion. The general public may respond in derogatory terms, like is a fool allowed to vote?, but in history this was the same with women and black persons. It just needs time

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and efforts to grow awareness on legal capacity. In some countries you can vote when you are okay, but when you are not okay you cannot vote. MDAC has launched a campaign called Save the vote (www.savethevote.info ) In discussion that followed, the following contributions are noted: In Kenya, persons with intellectual disability need to be registered as adults before they are allowed to vote, and people in prison are allowed to vote, but not in psychiatry, because the persons with mental illnesses are seen as having an unsound mind. Gabor Gombos, who used to work for MDAC until recently, gave a short reflection on this topic, and pointed at the long process (2006-2010) that was needed before Mr. Kiss actually had the right to vote. When the decision from the European Court came, the elections of 2010 had just passed. Most users are totally disempowered, and dont think that there is someone who can help them. They have no hope, and no financial means to access a regular lawyer. Besides that, social economic issues are often more important for a user, basically they are just trying to survive. MDAC is an advocacy organisation that tries to address the issues that are important in the lives of people with mental problems. The right to vote is the right to have a voice, the right to be counted. In 2006 there was a strong conviction at all levels of the community that people with mental barriers have no right to vote, and MDAC challenged this view and pushed Hungary to implement the Kiss-decision in the constitution. In the Concluding Observations of Spain, the CRPD Committee urged that the Spanish laws should also be Kiss-compliant, meaning that guardianship doesnt automatically imply losing the right to vote. Now the new draft law of Spain contains a part that a judge needs to assess and decide if the persons has the capacity to vote (in the guardianship process), but of course its an obvious discussion who can make such a decision, and on what grounds people then are excluded from their right to vote. This Spanish draft construction is not compliant with article 29 of the UNCRPD. Now the right to vote is agreed in some countries, but the right to legal capacity and the right to liberty are still denied, and it is good to look into the real motivations. Probably the governments and psychiatrists are just scared of what will happen when persons with psychosocial disabilities are not locked up. We need to find as much allies as we can, and make a flexible plan to find opportunities that will strengthen us. It was time for another tea break, and at 15.30 Helne Combrinck briefly explained the assignment for OHCHR thematic Study on Political Participation. This was a questionnaire that came from the Office of the High Commission on Human Rights (OHCHR), and all participants were asked to answer the questions, so that the OHCHR could identify facts of practices and realities, areas of concern, and priorities for the African continent and individual countries. This will be (anonymously) put into a political document that will be seen by diplomats of many countries. Gabor will make sure that the Special Procedures will be applied to disability rights activists, in order to protect user movements from any possible negative repercussion.

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The last topic on todays programme was Identifying PANUSP strategic priorities, which was group work, which will be put together in the report of Day 3. This was the end of the training component of the PANUSP work conference, and tomorrow we will proceed in drafting a PANUSP-constitution, election of a new board of PANUSP, a PANUSP Action Plan, and a Declaration of PANUSP for the Global Health Summit and the World Congress of the World Federation for Mental Health. It had been a very inspiring and long day again. 6.3 Day 3 Saturday 15 October 2011 was the third and final day of the PANUSP assembly in Cape Town, South Africa. Most of the day was mainly about the organisational structure and the advocacy role of PANUSP. Mr. Shuaib Chalklen, UN Special Rapporteur on Disability joined the seminar. The work of the Special Rapporteur was explained. He acknowledged that the position as a Special Rapporteur on Disability holds both great challenge and great responsibility. While much progress has been made through the adoption of the Convention on the Rights of Persons with Disabilities and increased efforts in promoting the disability-inclusive Millennium Development Goals, persons with disabilities, at least 10% of the world's population, still remain among the poorest of the world's citizens. And the current competing political, social and economic concerns make the needs of persons with disabilities all the more pressing. His most recent mandate is based on ECOSOC resolution 2008/20, in accordance with the provisions in section 4 of the Standard Rules: According to this mandate, the Special Rapporteur will: 1. Advocate for the rights of persons with disabilities in line with the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, the World Programme of Action concerning Disabled Persons and the Convention on the Rights of Persons with Disabilities; 2. Create awareness of the Convention on the Rights of Persons with Disabilities, 3. Act as a catalyst to promote international and technical cooperation on disability issues, sharing of expertise, best practices, knowledge, information and relevant technologies for capacity-building of Member States; 4. Collaborate with all relevant stakeholders, including organizations of persons with disabilities; The catalyst for the evolution of the mandate of the Special Rapporteur was the adoption of the World Programme of Action in 1982 and the Standard Rules on the Equalization of 62

Opportunities for Persons with Disabilities adopted in 1993. The Convention on the Rights of Persons with Disabilities that came into force in May 2008, builds on this, providing us with the strong legal basis to ensure that all persons with disabilities enjoy equal opportunities and respect for their fundamental freedoms and dignity. These are three core international disability instruments. Mr Chalklen said that he realized that people with psychosocial disabilities represented a vulnerable marginalized group, especially women and children. He had listed this group as a priority for his term. On the programme ahead we had: ratifying a PANUSP Constitution, electing of a new board of PANUSP, creating a PANUSP Action Plan, and drafting a Declaration of PANUSP Ratifying Constitution for PANUSP The participants proceeded with ratifying the draft Constitution for PANUSP, to be able to register with a legal framework. The participants reviewed the concept version of the PANUSP constitution, and quite soon a discussion began about the name of the Pan African Network of Users and Survivors of Psychiatry (PANUSP). It was mentioned that many persons with psychosocial disabilities in Africa dont have access to psychiatry at all, so it would be a bit weird to carry the name of Users and Survivors of Psychiatry. Also many people dont know what psychiatry is, so those words are meaningless. On the other hand, the Pan African Network is part of a worldwide network (WNUSP) and its good to reflect international coherence. And the name PANUSP is becoming a known brand, and its hard to start all over with a new name. And also, everyone had just gotten a conference T shirt, with the PANUSP logo on it, which would already be history then. There were many pros and cons, and the discussion took all morning.

After lunch the votes were still equally pro and against changing the name. At that point the persons who werent official participants (like Gabor Gombos, Eyong Mbuen and me, Jolijn Santegoeds) were asked to give our thoughts about the issue. After that, the 63

votes were in the beginning still equal, until someone withdrew his vote, in order to agree with a name change. That resulted in a new name: Pan African Network of People with Psychosocial Disabilities We brainstormed about a new abbreviation, which could be: PANPEP (a free interpretation of PANPPD). But it was only afterwards, that the idea came up to keep the original abbreviation (PANUSP) intact, like a real brand, while changing only the long name in itself. PANUSP Action Plan We preceded the conference with the PANUSP Action Plan. At the second day of the conference, we had had a group work session on identifying Strategic priorities for PANUSP, where we brainstormed about what is important for PANUSP. Every group had made a list of action points, and in todays session, we were going to compile it all into one Action Plan for PANUSP. All of the lists were hung on the walls of the conference room, and after checking all points, one big list was made out of all the action points. (See chapter 7)

Electing a new Board After finishing the Constitution and the Action Plan, it was time for the participants to elect a new Board. I was asked to be an independent election officer, and to facilitate the first meeting of the new Board of PANUSP, because they needed to elect the executives from the country representatives (chair, secretary, treasurer and deputies). First every country nominated a person who could run for Board member, and then the nominees presented themselves to the participants. The nominees who werent present were contacted by telephone, as far as needed and possible. Then a new Board was elected, while taking into account gender balance and geographic representation. Then the first Board meeting took place, and among the new Board members a Chair, Secretary and Treasurer were chosen, and also Deputies.

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Again it was a long day, especially for the newly elected Board members, who continued their first PANUSP-Board meeting until deep into the night. The new Board members drafted the Cape Town Declaration of PANUSP. On Sunday evening, 16 October 2011, there was an extra meeting scheduled to discuss the Cape Town Declaration. Many of us were moved by this beautiful and inspiring statement. After discussing and adjusting some small words, all participants unanimously agreed that it was a very good declaration, and the Declaration will be presented at the Global Summit by the new chair of PANUSP, Mrs. Robinah Nakanwagi Alambuya from Uganda. The 4th day of the Seminar was a day of rest. Day 5 Global Summit of World Conference WFMH 2011 At Monday, 17 October 2011, the second Global Summit took place, which was the preconference of the World Congress of the World Federation for Mental Health, and it was held in the Cape Town International Convention Centre (CTICC). The conference was mainly about expanding and scaling up mental health services in Africa (what carers refer to as the Great Push). And of course we, as users/survivors, agree that people with psychosocial disabilities need to be supported, but we dont think psychiatry, as it is, is the answer to our needs. This conference was basically the opposite of what we experienced the last week at the PANUSP work-conference. It wasnt intimate, but there were hundreds of people. Users werent centralized, but carers were. It wasnt well controlled, but chaotic. But still it was good to be there, because we have to make sure that the voice of users/survivors is heard. Due to registration queues I missed the first part of the first session, which was about scaling up of mental health care, such as the availability of psychotropic drugs, psychiatrists and psychiatric institutions in Africa. As I just said, this is a sore issue, because the current psychiatry isnt the answer, but rather a problem. Robinah Alambuya, new Chair of PANUSP reads Cape Town Declaration. The new chairperson of the Pan African movement, Ms Robinah Alambuya delivered the Cape Town Declaration of 16 October 2011. This was her first performance as chairperson, and she impressed everyone who was there. There was a very long applause for Robinah, who read this with so much dignity. She had the longest applause of the day, and she deserved that. It was really really impressive. This was for me, and many of us, absolutely the highlight of the day at the Global Summit. The other presentations mainly were about certain projects or organizations, just informative, while this statement was so real. And it came through. And with this feeling the PANUSP gathering 2011 in Cape Town had come to an end. Most of the participants were leaving on the next day. So we had one more nice dinner together, and one more night of nice talks with peers. It had been very inspiring for all of us. Now we had to go our own ways.32
32

This Chapter relied on the reporting of Jolijn Santegoeds, founder Stig Mind Rights www.mindrights.nl , email: tekeertegendeisoleer@hotmail.com the Netherlands, member of ENUSP and supporter of PANUSP

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Chapter 7 Action Plan for the Future of Pan African Network

Key lessons were learned during the preparation and during the 3 day Seminar and these must be addressed in an Action Plan to challenge the invisibility and silence of people with psychosocial disabilities. Marginalized and excluded groups in society lack the networks that are fundamental to developing pathways to important socioeconomic factors such as employment opportunities as well as being able to participate in the cultural and political spheres. Feelings of vulnerability are compounded by having no trusted networks or advocates that represents and supports their needs. Stigma and discrimination must be addressed within a human rights framework. Understanding of the CRPD should be increased at a national level in African countries and resources are needed to be channelled to do this. A strong disability rights approach broadens understanding and ways of working. It assists stakeholders move beyond the medical model. Strategic partnerships with all stakeholders are necessary to provide a holistic approach to provide support to people with psychosocial disabilities. A multisectoral approach is necessary with comprehensive service delivery with no reliance solely on the mental health care services. Broad based community involvement at local, district and national level is necessary. Engagement with National Human Rights Institutions on the Continent can drive implementation of CRPD and inclusion of people with psychosocial disabilities. Strategic litigation can bring about effective changes and this can enhance the situation on the ground. Poverty was identified as a structural cause of the non-realization of rights. Livelihoods are of great importance and economic integration was identified as primary unmet need. Where local beliefs are contrary to a human rights based approach, the connection between national and international legislation can have a direct influence on a community. There is a need to find commonalities without dismissing local relevance In Africa, organizations that represent people with psychosocial disabilities need to effectively present the issues affecting them and thus drive transformation which could have positive impact on their lives. Pursuing active engagement with other African

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disability organizations to be included on the agenda can contribute towards increased visibility. There exist various other mechanisms to safe guard and advance rights that can be engaged such as Office of High Commission for Human Rights and the Sub Committee on the Prevention of Torture as well as the associated African Prevention of Torture Committee. This avenue can pursue persons deprived of their liberty and influence the recommendations of National Preventative mechanisms. Engaging Academia can result in a forum for self representation and contributing towards debate at Conferences and in publications. The media are reticent to engage in persons that are mentally ill but will pursue news framed in a psychosocial disability rights issue paradigm. Medical professionals and carer organizations remain dominant in speaking for or on behalf people with psychosocial disabilities in Africa. There is an urgent need to increase the participation of PANUSP organizations in community, national and continental decisions and policy making so as to effect positive change, transformation and promote social justice. The profound sense of powerlessness to be able to influence positive changes in lives both within the community and at government, regional and international level can be challenged through effective organization and capacity building.

The Action Plan that was developed for PANUSP is dependent on accessing funding but the following 5 areas are a summary of the how the further strengthening and growth PANUSP could be achieved:

1. Further capacity building of member organizations through training in the following areas: Advocacy skills, UN CRPD/ rights, Management skills, Training in resource mobilization.

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2. Development of PANUSP as a network Fundraising (proposal writing, public awareness), Linking with and promoting organizations in other African countries, Registration of PANUSP so as to have legal persona A Media and publicity strategy must be formulated Website must be further developed, Give support to members in areas of needs. 3. Networking and raising awareness Establish relationships with like minded civil society organizations Develop relationships with local, national government structures, regional and intergovernmental bodies such as the AU, Human Rights Commissions, UN ECOSOC (obtain observer status), other disability structure and forums etc. Find allies in academia, professional bodies etc. 4. Advocacy Anti Chaining campaign, Law reform Develop common advocacy strategy 5. Promote Research and data gathering Document and record the situation of people with psychosocial disability

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Chapter 8 National Human Rights Institutions (NHRIs) and Persons with Psychosocial Disabilities
The Manager of South African Human Rights Commissions Parliamentary and International Affairs (SAHRC), Judith Cohen, addressed the Seminar on the 14 October 2011 and outlined the important role the NHRIs should play in the monitoring of the implementation of the CRPD. It was further elaborated that often persons with psychosocial disabilities were especially at risk for human rights violations. As most National Human Rights Institutions (NHRI) are mandated to ensure that national legislation is in harmonization with international treaties signed by their Country, NHRIs were the natural partners to the implementation of Article 33 (2). Furthermore there is international oversight of accredited NHRIs and this strengthened the powers of NHRIs. African Human Rights Commissions33 in all the represented PANUSPs countries have been accredited by the International Coordinating Committee for Human Rights Commissions (OHCHR) and in accordance adhere to the Paris Principles which ensures their independence: Malawi: Malawi Human Rights Commission http://www.malawihumanrightscommission.org/ We believe that human rights are universal, indivisible, interdependent and inalienable: The vision of the Commission is to see Malawi have a vibrant human rights culture. Our mission is to develop and sustain a culture of respect for human rights among all peoples in Malawi through human rights education, research, advocacy, investigations and providing effective remedies for grievances in order to achieve human dignity, peace and prosperity for our country. Ghana: Commission on Human Rights and Administrative Justice http://www.ghana.gov.gh/index.php?option=com_content&view=article&id=422:commissionon-human-rights-and-administrative-justice&catid=84:public-service-directory&Itemid=231 Exists to enhance the scale of good governance, democracy, integrity, peace and social development by promoting, protecting and enforcing fundamental human rights and freedoms and administrative justice for all persons in Ghana.
33

http://www.ohchr.org/Documents/Countries/NHRI/Chart_Status_NIs.pdf

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Kenya Commission on Human Rights http://www.knchr.org/ The Kenya National Commission on Human Rights (the Commission) is an autonomous National Human Rights Institution established by an Act of Parliament in 2002. Its core mandate is to act as a watchdog over the Government in order to further the protection and promotion of human rights in Kenya. Zambia Human Rights Commission http://www.hrc.org.zm/ We have a responsibility to protect you when your rights are violated or about to be violated. By law, we are empowered to do a lot of things in ensuring that your human rights are not violated. We investigate complaints of human rights abuses and assist the victims to seek relief. The Commission by its mandate also has the advantage of settling disputes through a transparent procedure in a timely and cost-free manner. The Commission is not only concerned with handling human rights violations, but also educating people about their rights and corresponding responsibilities. Research is another major preoccupation of the Commission. You can access our reports in the publications section which highlight human rights issues in Zambia. Ugandan Human Rights Commission http://www.uhrc.ug/ To protect and promote human rights as guaranteed by the Constitution and other binding human rights instruments, guided by the requirements of our legislative mandate, by international and regional human rights standards and working through partnerships. Tanzania commission for Human Rights and Good Governance http://chragg.go.tz/ Our Vision is to be committed to the creation of a just society and culture in which human rights and principles of good governance are promoted, protected and preserved. Our Mission is to independently promote and protect all human rights, duties and principles of administrative justice in order to enhance democracy ,rule of law and good governance. Rwanda Commission of Human Rights http://www.cndp.org.rw/ Nigeria Human Rights Commission http://www.nigeriarights.gov.ng/

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Its establishment is aimed at creating an enabling environment for extra-judicial recognition, promotion and protection and enforcement of human rights, treaty obligations and providing a forum for public enlightenment and dialogue on human rights issues thereby limiting controversy and confrontation. South African Human Rights Commission www.sahrc.org.za The South African Human Rights Commission is the national institution established to support constitutional democracy. It is committed to promote respect for, observance of and protection of human rights for everyone without fear or favour. The South African Human Rights Commission hosted the Network of African Human Rights Institutions Conference in Cape Town 19 21 October 2012 and an invitation was extended to PANUSP newly elected Chairperson. An opportunity was given for the Cape Town Declaration to be read to the conference delegates. Our Chairperson participated and successfully networked thus raising awareness of PANUSP, the advocacy needed to address human rights for people with psychosocial disabilities and exploring ways for PANUSP to work with NANRI in Africa.

Chairperson of PANUSP, Robinah Alambuya speaking to Commissioners at NANRI Conference

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Chapter 9 Implementing Engagement with International and Regional Bodies

PANUSP was invited to the Regional consultation for Africa on enhancing cooperation between UN and regional human rights mechanisms on prevention of torture and protection of victims of torture, especially persons deprived of their liberty. This was Addis Ababa, Ethiopia 6 to 7 February 2012. Action Amos represented PANUSP and participated in the event thus raising awareness and establishing links with regional and international mechanisms that address Torture.

Photograph by Robin Hammond, 2011 of person with a psychosocial disability in a jail in South Sudan A Report was compiled by Annie Robb and Action Amos and disseminated. This was followed up by a submission to the Sub Committee on the Prevention of Torture.

Introduction:
Action Amos, Secretary of the Pan African Network of People with Psychosocial Disabilities (PANUSP) attended an African regional consultative meeting 6-7 February in Addis Ababa 2012. The stated objective of the meeting was that discussions would be held with the aim:

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at identifying concrete means and tools of cooperation between UN and African human rights mechanisms focused on the fight against torture and will focus on some areas identified as key during the international workshop on cooperation between international and regional human rights mechanisms held in Geneva in 2010 (A/HRC/15/56): sharing of information, possible joint activities, and follow up to recommendations. The role of National Preventative Mechanisms (NPMs) and NGOs will also be discussed. Accomplishments and challenges encountered in the implementation of the Dakar Plan of Action will also be taken into account. These discussions will allow ensuring coherence, avoiding gaps and overlaps, as well as strengthening complementarity and maximizing the impact of both UN and African human rights mechanisms actions. The consultation will also allow to identifying concrete commitments for short and medium term.34 Action Amos was invited as the representative of PANUSP, the World Network of Users and Survivors of Psychiatry (WNUSP) and the International Disability Alliance (IDA) to this African regional meeting.

Background:
In Africa, extreme poverty is often associated with living conditions of people with psychosocial disabilities. During conflict and post conflict and other natural disasters, this is exacerbated as they become further vulnerable to human rights abuses as family structures disintegrate and existing supports collapse. Increasingly in Africa many people with psychosocial disabilities are becoming homeless and are abandoned by their families. Local authorities often place them in jails and other inappropriate places of detention. Deprived of their liberty, they become forgotten persons. In Africa, most settings of places of detention, including mental health care institutions, are impoverished with essentials such as shelter, food, sanitation, health care and even bedding being inadequate or absent. Deprivation of essential needs is common place. Overcrowding often further exacerbates the already inhuman conditions. Staff is often overburdened, untrained and poorly paid. This can be complicated by the often hierarchical structure of the setting. Authoritarian management styles are reported to promote corrupt, oppressive and abusive cultures amongst staff and between residents. Extreme neglect, chaining and other cruel restraints, as well as solitary confinement are common practices not only in health facilities and other places detention but also in traditional healing camps and religious settings. These methods of driving out demons or evil spirits are torture and often result in extreme suffering and sometimes death of the person. There often exists inadequate legislation or policies that promote and protect the rights of people with psychosocial disabilities. Although 50% of the African continent has signed the CRPD, there is little evidence of implementation. There is scant, if any awareness, oversight and monitoring by governments, public health officials, the public, the press or police of
34

Programme as issued by OHCHR for the meeting

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settings where people with psychosocial disabilities are deprived of their liberty. Exacerbating and compounding this is that stigma is not addressed in Africa, with many countries still having legislation that refers to people with psychosocial disabilities as lunatics or the insane. This is further compounded by a medical model of understanding disability and therefore a focus on medical solutions and lack of treatments while ignoring the existing human rights violations. There exists a scarcity of Civil Society Organizations that address the plight of people with psychosocial disabilities. Disabled Peoples Organizations in Africa lack resources and are therefore poorly structured and represented to advocate the challenges facing people with psychosocial disabilities. Additionally, people with psychosocial disability may be socialized in a way that leads them to expect and accept a certain level of personal indignity, mishandling, violence and neglect as a part of their lives. They may become desensitized or resigned to such conduct. In more extreme cases, they may come to believe that abuse, neglect and ill treatment is deserved because of their impairment and lack of social value. This further challenges the issues of people with psychosocial disabilities to be made visible. Considering the above, ill treatment and torture is most likely to go undetected and if detected, unlikely to be acted upon. The visibility and voice of people with disability needs to be heard. Therefore, through the legal frameworks and implementation of CAT and OPCAT and the mechanisms created (Subcommittee on the Prevention of Torture SPT and National Preventative Mechanisms NPMs); the role of Regional Mechanisms such as the African Commission on Human and Peoples Rights, the Committee for the Prevention of Torture and African National Human Rights Institutions; PANUSP as an NGO could play an important role in raising awareness and recommending policies and practices regarding deprivation of liberty, ill treatment and torture of people with disabilities.

Observations and Comment of Regional Meeting 6-7 February:

The majority, approximately 80%, of the participants to this meeting had met a week earlier under auspices of African Commission on Human and Peoples Rights (ACPHR) to discuss torture. This rendered the meeting a formality to those not present in the previous meeting as the plan or a base for this discussion had already been established. However the presence of a representative of IDA, WNUSP and PANUSP was an indication that the grouping is still accommodative and evolving. We, as disability activists should take advantage of this. It appears that the existing participants are dominated by a grouping of African countries whose view of torture of people with disabilities, especially mental disabilities, is biased and poorly understood. Discussion around prevention of torture in the grouping seemed to be restricted to prisons and persons who could be referred to as normal and issues around disability were not included. Despite the Subcommittee on the Prevention of Torture clearly stating in numerous communiqus that mental health care facilities/psychiatric institutions fall under their

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mandate35, the thinking of rights only belonging to people without disabilities was evident in responses by participants. Most participants kept referring to Mental Disability or People with Psychosocial Disabilities (pwpd) as not covered under torture frameworks. It was observed from the language used by participants that psychiatric institutions or any place of detention for pwpd indicates that pwpd were not classified or considered to be persons deprived of their liberty and therefore not analogous and with very similar context as those deprived of their liberty in a prison. Additionally the consideration of people with disabilities in prisons is not highlighted or even considered as an issue. During the 63rd session (July, 2008) of the United National General Assembly, the United Nations Special Rapporteur on Torture and other cruel inhuman or degrading treatment of punishment, Manfred Nowak, reported on his concerns regarding the situations of people with disabilities. He highlighted the existing vulnerability to torture and associated cruel inhumane treatment of people with disabilities and could be argued to have been the first clear international statement of the clear relatedness of issues concerning torture and people with disabilities. He stated that PWD are frequently subjected to neglect, severe forms of restraint and seclusion, as well as physical, mental and sexual violence. Nowak expressed his concern that such practices, perpetrated in public institutions, as well as in the private sphere, remain invisible and are not recognized as torture or other cruel, inhuman or degrading treatment or punishment. He further stated that: The recent entry into force of the Convention on the Rights of Persons with Disabilities and its Optional Protocol provides a timely opportunity to review the antitorture framework in relation to persons with disabilities. By reframing violence and abuse perpetrated against persons with disabilities as torture or a form of ill-treatment, victims and advocates can be afforded stronger legal protection and redress for violations of human rights.36 However, the Chief of National Institutions and Regional Mechanisms Section (NIRMS at the UN Office of the High Commission on Human Rights), Vladlen Stefano and Ms. Sedalia Belmir, acknowledged the need to include pwpd when promoting joint activities among African human rights mechanism on torture.

Summary of interventions by Action Amos:

My intervention initially was to highlight the role of NGOs by giving examples of my own background and who I represented at this forum IDA, WNUSP and PANUSP. I cited that our organizations are excluded and ignored together with other torture NGOs in terms of information availability.
FactFile on UN Subcommittee on Prevention of Torture and other Forms of Ill-Treatment issued by Secretariat of the SPT, Geneva, www.ohchr.org 36 A/63/175
35

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As one of the roles of NGOs is to supply good quality information to UN and African mechanisms, I highlighted that there was an information gap with regards especially of psychosocial disability. The reasons I cited were: 1) non inclusion of the tortured voices and 2) non involvement of NGOs, especially the African regional ones, with a preference to western supplied information The ACHPR Special Rapporteur on Prisons and Conditions of Detention was asked if torture happens on people with Psychosocial Disabilities and if this was considered by his office. He openly admitted that it was not. It is of concern that this statement indicates that there is a lack of acknowledgement of the number of people with psychosocial disabilities that are present in jails in Africa and the limited scope of the mandate afforded this position.. There was a suggestion to redefine torture and I intervened that this definition should not ignore but must include pwpd and the relevant institutions that handle such. Additionally I highlighted the issue on torture giving an example of a prayer camp. There was a dissenting voice from West Africa that such should not be considered as guardians would be responsible for taking a patient to prayer camp. This is of concern as it indicates a lack of understanding of the legal capacity of people with psychosocial disabilities as outlined in the Convention of the Rights of Persons with Disabilities (CRPD). There was a heated debate on the role, independence or separation of NPMs from of as part of NHRIs in Africa. Africa was cited as a continent who cannot manage these as two separate entities. Lastly, and most importantly, I highlighted the complimenting instrument Disability has provided in the form of the Convention on the Rights of People with Disabilities (2008) with regards respect of the rights of people with disability deprived of their liberty. There appeared to be total ignorance of such any instrument and the relevance for issues around torture and deprivation of liberty and the impact this convention has for human rights and the impact it has for the prevention and monitoring of people with disabilities deprived of their liberty.

Conclusions:
Draft conclusions of the meeting were disseminated with the following reference: The African Union Member States may want to consider to ratifying the Convention on the Rights of Persons with Disabilities, as the EU did. However no other references to the impact that this convention has on the torture framework were mentioned. So as to ensure that the risk that the rights of persons with disabilities are not ignored, diluted or minimized because of insufficient collaboration and consultation and to ensure that The Convention on the Rights of Persons with Disabilities (CRPD) is regarded as the principle and initial guidance for the human rights of persons with psychosocial disabilities; 76

but Recognizing that each of the 9 core documents of UN Human Rights treaties are of equal status and that human rights are inter related and that the standards that they promote must be read as a whole rather than as alternatives, and Noting that the CRPD must not be used as the only source of human rights of persons with psychosocial disabilities and that other sources of rights and standards must also be recognized where they are applicable, such as the Convention on Torture and the Optional Protocol on the Prevention of Torture and the United Nations Office of the High Commissioner for Human Rights (OHCHR) and related mechanism, the Subcommittee on Torture (SPT) and Further noting that the key rights and related issues elaborated by CAT is in respect to freedom from torture and cruel, inhuman and degrading treatment or punishment., while OPCAT details the creation Subcommittee on the Prevention of Torture and of National Preventative Mechanisms so as to proactively contribute towards the prevention of ill treatment and torture. and Concerned with the continuing discrimination and human rights violations against people with disabilities and the increasing number, further marginalization and increased vulnerability of people with psychosocial disabilities as witnessed by the exclusion and lack of understanding of issues at the Regional Meeting 6-7 February, The following recommendations and actions are suggested:

Recommendations:
1. The SPT representative Zbigniew LASOCIK from Geneva invited WNUSP, IDA, and PANUSP to make any submissions to his office as his office will be holding workshops concerning torture in Europe. The submissions should be on Africa and beyond and a request to participate in these workshops. 2. The APT African Programme Adviser commented on our efforts and the need to be visible. Her office is currently screening countries in Africa where they would be focusing and WNUSP, IDA, and PANUSP should take advantage of this and submit a communiqu. 3. Educate and disseminate information to the existing group regarding the CRPD and issues concerning people with disabilities re torture and deprivation of liberty, including input on the practices and recommendations of NPMs that will promote the prevention of human rights abuses of people with mental disability in Africa. Specifically articles within the CRPD such as article 19 that can inform NPM recommendations for deprivation of liberty, article 12 and the role and interactions that existing monitoring criteria of article 16 and 33 of CRPD play.

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4. Issue a statement to regional and international disability organizations and other civil society allies, intergovernmental bodies and regional bodies that clearly outline PANUSPs role as a stakeholder in ensuring that the role that CAT, OPCAT and the associated mechanisms and protections for people with psychosocial disabilities in Africa is embraced as a legislative framework to prevent torture. 5. A definition of torture that includes all vulnerable groups that suffer torture and cruel inhuman treatment in Africa must be lobbied for. This is necessary to give effect to national legislation in African countries as outlined in Article 2.1: Each State Party shall take effective legislative, administrative, judicial or other measures to prevent acts of torture in any territory under its jurisdiction. A suitable definition must be included in relevant African regional instruments. 6. The Robben Island Guidelines need to be updated to include the monitoring of psychiatric institutions, social care homes and other places and institutions where the deprivation of liberty exists of people with disabilities. The Decade of the Guidelines is to be celebrated this year and this provides an opportunity for revision. 7. In promoting the ratification and implementation of CAT and OPCAT, allies need to be sought from other civil society organizations in Africa that represent people who are vulnerable to torture, ill treatment, abuse and neglect. People who are regarded as albinos are subject to torture when kidnapped and their body parts are removed, witch camps exist where those accused of witchcraft are deprived of their liberty. Leper colonies still exist in Africa where people are socially isolated and deprived of their liberty. LGBTI persons are subject to discrimination and practice that amount to torture and ill treatment such as corrective rapes of lesbian women. 8. Provide specific information regarding persons with disabilities to relevant bodies on instances and circumstances of torture, cruel and inhuman treatment. 9. Monitor and disseminate statements and reports that inform on the performance of NPMs PANUSP did submit a submission to the SPT as recommended and circulated this widely so as raise awareness of role of representative organizations of people with psychosocial disabilities as important stakeholders. PANUSP has submitted a Communiqu to African Prevention of Torture Committee and seeks to play a further role in the development of CAT and regional mechanisms to promote and protect the rights of people with psychosocial disabilities on the Continent.

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Chapter 10 Supporting National Representation in African Countries

PANUSP was invited to present a paper at the Malawi Mental Health Conference in March 2012 and to officially launch the Mental Health Carers and Users of Malawi organization. The PANUSP abstract for the paper was as follows: Human Rights and the inclusion of People with Psychosocial Disabilities in Africa Abstract: The political involvement of people with psychosocial disabilities in Africa in determining their life choices has begun to emerge. By embracing human rights as a tool for development and as a mechanism to promote self representation, national organizations of the African Continent has over the past decade created a network to function as a voice for what is often a stigmatized and discriminated group of people. The voice of those that are perceived as mentally ill or mentally disturbed is often disregarded, considered irrelevant or ignored. Building a continental network contributes towards challenging this invisibility and promoting meaningful inclusion. The establishment of the Pan African Network of Users and Survivors of Psychiatry occurred within the historical context of the emergence of the global movement of users and survivors of psychiatry and the drafting of the United Nations Convention of the Rights of People with Disabilities (2008). The paper was designed to alert to the importance of the CRPD when considering Mental Health in Malawi. Sharing of valuable information assists in building PANUSP. For example, in November 2011 Michael Njenga from USPKenya was selected to participate in the CRPD monitoring process as a Disabled Person Organization representative. The composition of the team, as well as the inclusion of partners on the ground, fully complied with the provisions of Article 33(3) of the Convention on the Rights of Persons with Disabilities, which provides that : Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process. Monitoring the rights of persons with disabilities at the national level involved an assessment of whether measures to implement the Convention have been adopted and an evaluation of the results of such measures. Identifying gaps in implementation would inform future intervention by the state as well as empower persons with disabilities to become increasingly aware of their rights, therefore bringing about positive change in the lives of persons with disabilities. The monitoring was carried out by a team of internal staff of the Kenya National Commission on Human Rights (KNCHR) and external partners.

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Michael added: From my only personal observation persons with psychosocial disabilities faces a lot of challenges especially in the areas of free and informed consent when accessing Medicare moreover there is rampant societal stigma and abuse that is directed towards them which more than often leads to serious human rights violation. The social protection program which is extended towards people with disabilities does not cover persons with psychosocial disabilities leaving them to live in abject poverty struggling even to meet their basic needs. Access to justice and recognizing their legal capacity is just but a mirage.

Also shared was that In January 2012 I worked with Tirza Leibowitz in developing a position paper on the legal Aid Bill which is in Draft form. The Legal Aid Bill provides an opportunity to ensure access to justice for persons with insufficient means to pay for legal services, and those marginalized or more vulnerable than others to injustice. The Legal Aid Bill should guarantee them independent access to apply for legal aid, as well as where necessary and required support and accommodations in applying. We were concerned, however, that some of the Bills provisions deny rather than ensure access to justice for persons with psychosocial disabilities Article 12 of the Bill restricts persons with mental disabilities from applying for legal aid in civil proceedings, and requires that others apply on their behalf. We strongly felt that curtailing persons with disabilities independent access to legal remedies infringes on their access to justice. Assuming incapacity to apply for legal aid conflicts with Kenyas obligations as a State party to the United Nations Convention on the Rights of Persons with Disabilities (CRPD), according to which persons with disabilities enjoyment of full legal capacity on an equal basis with others should be recognized. From the perspective of consistency with the legislative framework, it is inappropriate to regulate legal capacity in each law separately. Instead, the issue should be addressed appropriately in a general law on legal capacity. Accordingly we felt that reference in Article 12 to a person who has a mental disability should be removed. These were among the key area of advocacy among others. PANUSP also has taken a stand against the human rights violations of other marginalized groups and published a statement regarding the widespread homophobia on the Continent: Statement on Homophobia in the Media 10 November 2011
We, as people living with psychosocial disabilities and in accordance with the United Nations Convention on the Rights of People with Disabilities (2008), are committed to the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms. We know that for as long as human rights violations are tolerated by the silence and inaction of others and derogatory stereotyping is allowed to go unchallenged, it is a short step towards the amplification and further dehumanization of groups and individuals that are not regarded as worthy of full citizenship. It is with this background that we decided will not remain silent about sexual orientation.

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We refer to a news report in the Modern Ghana of 7 November 2011 that is entitled Homos are Mentally Sick37 This report promotes intolerance and prejudices against persons that identify as homosexual. This we believe increases the risk of vulnerability to acts of discrimination and human rights violations. This is demonstrated by Rev. Akpalu of the Ghana Mental Health Association that regards persons who choose to have same sex relationships as devalued and are not regarded by him as full citizens. We respect his personal choice of religious beliefs but what we object to is his public derogatory judgement and proposed actions as reported: Rev. Akpalu said the Ghana Mental Health Association would classify the perpetrators and supporters of these dirty acts as suffering severe mental problems, and should therefore be referred to a mental health facility for early treatment before suicide sets in. This statement labels homosexuals and those that support them as criminals that should receive psychiatric medical treatment. This we regard as a derogatory statement that serves only to promote the discriminatory ideology of homophobia on the African continent. We question what authority Ghana Mental Health Association has to classify homosexuals as criminals or mentally ill? It would appear that this is based solely on Rev. Akpalus personal convictions and beliefs. Homosexuality has no basis for a psychiatric diagnosis and there is no evidence that suicide sets in. Furthermore, it deeply concerns us that Rev. Akpalu regards mental health facilities as institutions for seclusion, social reform and punishment for a lifestyle that he personally disagrees with. People who identify as LGBTI on the African Continent are under increasing threat and face increasing homophobia in the form of violence, harassment, discrimination, exclusion, stigmatization and prejudice. Often action is taken against people based on their sexual orientation and this can be described as the practice of torture or cruel, inhuman and degrading treatment or punishment. These actions are often driven and expressed by an ideology of homophobia that is demonstrated by Rev. Akpalus statements. Increasingly on the African continent, homosexuality is linked to mental illness. Arbitrary arrest and detention in mental health facilities is proposed. Placing people that choose to have same sex relationships into mental health facilities against their will will deprive them of their freedom and expose them to forced medical treatment. This is a further human right violation that is being proposed. The Pan African Network of People with Psychosocial Disabilities believes that a persons sexual orientation is an individual choice that must be respected, that people that identify as LGBTI are full members of the human family and therefore must be afforded the dignity and rights of all.

PANUSP continues to share and exchange information via the internet. PANUSP has welcomed a new organization to the Network from The Gambia. We have a now established website where news and more resources can be accessed: www.panusp.org

37

http://www.modernghana.com/news/359678/1/homos-are-mentally-sick.html

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Appendix 1 PAN AFRICAN NETWORK OF PEOPLE WITH PSYCHOSOCIAL DISABILITIES CAPE TOWN DECLARATION of 16 OCTOBER 2011
We recognise that people with psychosocial disabilities have been viewed in bad ways, with derogatory words being used to describe us such as mentally disturbed, having unsound minds, idiots, lunatics, imbeciles and many other hurtful labels We are people first! We have potentials, abilities, talents and each of us can make a great contribution to the world. We in the past, presently and in the future, have, do and will continue to make great contributions if barriers are removed. We believe in an Africa in which all people are free to be themselves and to be treated with dignity. We are all different, unique and our differences should be appreciated as an issue of diversity. We need all people to embrace this diversity. Diversity is beautiful. There can be no mental health without our expertise. We are the knowers and yet we remain the untapped resource in mental health care. We are the experts. We want to be listened to and to fully participate in our life decisions. We must be the masters of our life journeys. We want, like everyone else, to vote. We want to marry, form relationships, have fulfilled family lives, raise children, and be treated as others in the workplace with equal remuneration for equal work. For as long as others decide for us, we do not have rights. No one can speak for us. We want to speak for ourselves. We want to be embraced with respect and love. We are deeply concerned about the extent of suffering experienced by our brothers and sisters on our vast continent. Poverty, human rights violations and psychosocial disability go hand in hand. We know that there can be no dignity where poverty exists. No medicines or sophisticated western technology can eradicate poverty and restore dignity. The history of psychiatry haunts our present. Our people remain chained and shackled in institutions and by ideas which our colonisers brought to our continent. We want everyone to acknowledge their participation in calling us names and treating us as lesser beings. These are the barriers to our full enjoyment of life. These barriers are disabling us and these prevent us from fully participating in society. We wish for a better world in which all people are treated equally, a world where human rights belong to everyone. We invite you to walk beside us. We know where we want to go.

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Appendix 2 Declaration PANUSP (French)

Nous reconnaissance que les personnes atteintes de handicaps psychosociaux ont t vues dans les mauvaises manires, avec des mots pjoratifs utiliss pour nous dcrire comme les malades mentaux, des esprits mal fonde avoir, des idiots, des fous, des imbciles et de nombreux autres labels blessants Nous sommes des gens d'abord! Nous avons le potentiel, les capacits, les talents et chacun de nous peut apporter une grande contribution au monde. Nous, dans le pass, actuellement et dans l'avenir, avoir, faire et continuera faire de grandes contributions, si les obstacles sont limins. Nous croyons en une Afrique o tous les gens sont libres d'tre eux-mmes et d'tre traits avec dignit. Nous sommes tous diffrents, uniques et de nos diffrences doit tre apprci comme une question de la diversit. Nous avons besoin de tous les gens embrasser cette diversit. La diversit est belle. Il ne peut tre en sant mentale, sans notre expertise. Nous sommes les connaisseurs et pourtant nous restons la ressource inexploite dans les soins de sant mentale. Nous sommes les experts. Nous voulons tre couts et de participer pleinement la vie de nos dcisions. Nous devons tre matres de notre parcours de vie. Nous voulons, comme tout le monde, voter. Nous voulons nous marier, nouer des relations, ont rempli la vie de famille, lever des enfants, et sera traite comme les autres dans le milieu de travail avec une rmunration gale pour un travail gal. Pour aussi longtemps que les autres dcider pour nous, nous n'avons pas les droits.Personne ne peut parler pour nous. Nous voulons parler pour nous-mmes. Nous voulons tre embrass avec respect et amour. Nous sommes profondment proccups par l'ampleur de la souffrance vcue par nos frres et surs sur notre vaste continent. La pauvret, violations des droits humains et le handicap psychosocial vont main dans la main. Nous savons qu'il peut y avoir aucune dignit, o la pauvret existe. Pas de mdicaments ou une technologie sophistique de l'ouest peut radiquer la pauvret et restaurer la dignit. L'histoire de la psychiatrie hante notre prsent. Notre peuple reste enchan et entrav dans les institutions et par des ides dont nos colonisateurs apport notre continent. Nous voulons que chacun de reconnatre leur participation l'appel des noms nous et nous traiter comme des tres infrieurs. Ce sont les obstacles la pleine jouissance de notre vie. Ces obstacles sont entre nous et ces invalidante nous empcher de participer pleinement la socit. Nous souhaitons pour un monde meilleur dans lequel tous les gens sont traits de manire gale, un monde o les droits de l'homme appartiennent tous. Nous vous invitons marcher ct de nous. Nous savons o nous voulons aller.

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CONSTITUTION OF THE PAN AFRICAN NETWORK OF PEOPLE WITH PSYCHOSOCIAL DISABILITIES

The definition of people with psychosocial disabilities is those that are or have been users or survivors of mental health care services and also those that are labelled as mentally disturbed. 1. NAME 1.1 The organisation hereby constituted will be called the Pan African Network of People with Psychosocial Disabilities former known as the Pan African Network of Users and Survivors of Psychiatry, hereinafter referred to as the organisation. The organisation must be registered in a country that has membership. However, it may be transferred to any other locality on the African Continent upon a decision of the General Meeting. The activities of the organisation are exercised throughout the African Continent and may be extended to anywhere in the world. The organisation is created for an indeterminate period. The organisation shall: 1.5.1 Exist in its own right, separately from its members; 1.5.2 Continue to exist even when its membership changes and there are different office bearers; and 1.5.3 Be able to own property and other possessions. 2. MISSION AND OBJECTIVES 2.1 The Pan African Network of People with Psychosocial Disabilities is established as a Continental organisation to represent the legitimate voice of people living with psychosocial disabilities in Africa. It aims to increase continental solidarity amongst organizations that promote and protect the rights of people with psychosocial disabilities.

Appendix 3

1.2

1.3 1.4 1.5

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2.2

The organisation will seek to achieve the following objectives pursuant of its mission: 2.2.1 To ensure that member organisations work towards improving the quality of life of people with psychosocial disabilities in Africa so that they may reclaim their dignity and achieve equal rights and opportunities; 2.2.2 To function as an advocacy mechanism that is dedicated to social justice, human rights, empowerment, social development and full participation and inclusion of all people with psychosocial disabilities in Africa; 2.2.3 To promote the establishment of national organisations and to support and promote their work and that of existing member organisations; 2.2.4 To network and build relationships with other civil society organisations, intergovernmental organisations, regional bodies, governments and other relevant institutions and individuals to further its mission; and 2.2.5 To be an African forum and network for the exchange of knowledge, raising awareness and the promotion of research regarding psychosocial disability.

3.

MEMBERSHIP 3.1 Membership of the organisation is open to all recognized and legally constituted organizations that represent the interests of people with psychosocial disabilities in their countries and whose constitutions reflect this and who are led by people with psychosocial disabilities. Members are organisations who have the right to attend and speak at any General Meeting. Members of the organisation should attend the General Meeting unless circumstances do not allow for their participation. Membership is by application. The board will consider it and grant it if the organisation meets the criteria. Membership fees is will be decided upon by the board. Honorary membership can be granted to any organisations and individuals that have made an exemplary contribution towards the mission and objectives of the organisation. Honorary membership can be nominated by the board and granted by the General Assembly. Membership lapses as a result of any of the following 85

3.2 3.3 3.4 3.5 3.6

3.7

3.7.1 3.7.2 3.7.3 3.8

Resignation of the member The decision of the Board to dismiss the member Dissolution of the member organisation

Appeals on dismissal of a member organization must be addressed by an independent arbitrator that is agreed upon by both parties. The decision of the arbitrator on the matter is final and binding. In the case of consideration of dismissal of a member by the board, the member must be afforded the opportunity to a hearing. Adequate notice of no less than 2 weeks of the hearing must be given to the member by the Chairperson. The outcome and contents of the hearing are confidential and do not have to be disclosed to other members. The dismissed member reserves the right to disclosure as he or she chooses.

3.9

4.

DECISION MAKING PROCEDURES All decisions by the organization and its structures shall be made by consensus, if this fails, voting will be conducted in a democratic manner that is free and fair. If the votes are equal, the person chairing the meeting should again attempt to reach consensus, failing which he or she has the deciding vote.

5.

MANAGEMENT 5.1 The Board is the highest governing body and shall have all the powers necessary for it to carry out the stated mission and objectives of the organisation effectively. 5.1.1 The Board will manage the organisation and will be made up of one representative from each member country 5.1.2 All member organizations from each country shall e.lect among themselves one representative to the Board. 5.2 At the first meeting of the board members shall elect amongst themselves the office bearers: the chairperson, the vice chairperson, the secretary, the vice secretary, and the treasurer. After the five office bearers have been elected the remaining country representatives without portfolio will become ordinary members. The board as it may deem fit may co-opt three other nonvoting board members as the need for expertise arises. Preference at all times should be given to coopting experts which promote self representation.

5.3

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5.4 5.5

The Executive Members of the Board will hold office for a period of four years. The Board will meet three times a year or as often as required if matters arise. A quorum will comprise 2/3 of the Board members. Board meetings can be face to face or by tele/video conference. If a member of the Board does not participate in three successive Board meetings without reasonable grounds, the rest of the Board organises a special meeting to decide on his or her replacement only if the position is necessary for the effective functioning of the organisation. The minutes of each board meeting must be taken and distributed to the Board members within a period of not more than 60 days after it was held. Board must stand for re-election every 4th year. The Board members are eligible for only 2 terms of office. The Board may create and or disband one or several working committees as it deems necessary. Each working committee informs the Board about the progress of its activities and does so regularly. The Board will appoint a Chairperson of each working committee and this person must be a member of the Board provided that the matter to be handled by the committee does not concern commission or omission by the same board. The responsibilities and duties of the office bearers are: 5.10.1 The Chairperson will: (a) In consultation with the Board, lead the organization. (b) Be the spokesperson unless otherwise he or she designates to another person. (c) In consultation with other Board Members oversees the implementation of policies and strategies that work towards achieving the mission and objectives of the organization (d) Chair Board Meetings. (e) Will carry out other duties that may be assigned to him or her by members of the organization that will be to the benefit of the organization or assist in achieving the mission and objectives of the organization. (f) Will be jointly responsible in liaison with the Treasurer for the financial management of the organisation. (g) Maintain the membership list and ensure the confidentiality of the members details where relevant. (h) Be Co-signatory on cheques and financial documentation of the organisation unless by Board agreement another Board member is appointed. 87

5.6

5.7 5.8 5.9

5.10

(e) Can represent the organisation at other fora unless by Board agreement another Board member is designated to represent the organisations. 5.10.2 Vice Chairperson will deputise the chairperson and conduct all duties as assigned to him or her by the Chairperson or the board. 5.10.3 Secretary will: (a) (b) (c) (d) (e) Be responsible for the minutes of all Board Meetings unless absent. The person that chairs the above mentioned meetings will appoint a member in the case of his or her absence. Liaise with the Chairperson and compile and distribute the agenda of Board meetings Notify the Board members of all meetings. Is responsible for the all administrative functions of the Organisation as directed by Board

5.10.4 Vice Secretary will deputise the secretary and conduct all duties as assigned to him or her by the secretary or the board. 5.10.5 Treasurer will: (a) (b) Will be responsible in liaison with the Chairperson for the financial management of the organization; Be Co-signatory on cheques and financial documentation of the organisation. Where the treasurer resides in the country other than the headquarter he or she must designate a second person to act and sign by hand on his/her behalf. All financial transactions must however be electronically scanned and mailed to the treasurer for control purposes.

5.10.6 Ordinary members shall: (a) Function as country representative Board member without portfolio; (b) Carry out functions as directed by consensus of Board members; and (c) Ensure that the organization is run as according to the constitution. 6. POWERS OF THE BOARD 6.1 The Board shall take on the power and authority that it believes it needs to be able to achieve the mission and objectives that are stated in Paragraph 2 of this constitution. Its activities must abide by the law.

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6.2 6.3 6.4

The Board has the power and authority to raise funds or to invite and receive contributions. The Board does have the powers to buy, hire or exchange for any property that it needs to achieve its objectives. The Board has the right to make policy and rules for effective management of the organization, including procedure for application, approval and termination of membership, staff appointments, allocation of monies spent or paid by the organization. The Board will decide on further duties and responsibilities of office bearers. The Board must prevent any person or group from using the organization for personal gain or to the detriment of the membership in general. The board shall establish a secretariat and source funding for its establishment.

6.5 6.6 6.7 7.

SECRETARIAT 7.1 7.2 A secretariat will be established which will be responsible for the day to day operational functions of the organisation. Funds permitting. The board shall appoint a coordinating staff member who will be the head of the secretariat, once funds are available and whose title shall be agreed upon by the board. The board shall be responsible to defining the role and scope of the responsibilities of the secretariat.

8.

MEETING PROCEDURES 8.1 8.2 8.3 The Board must call at least 3 Board Meetings each year. Every 4th year, one of these may be the General meeting. Notice of all General Meetings must be given to the members at least 3 months before the date of such meetings. The Chairperson, or two members of the Board, can call a Special Meeting if they want to. They must let the other Board members know the date of the proposed meeting not less than 1 month before it is due to take place unless of an extremely urgent matter that does not allow this notice period. They must communicate with all other members of the Board regarding issues that will be discussed at the meeting.

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8.4

Members of the organization can call a General Meeting if matters arise that require a meeting of all members of the organization. The Board must be notified of the reasons for the meeting. In the event of the Board is not in agreement or fails to respond or the member is not satisfied with the response, a quorum of two thirds majority of members will constitute a General Meeting and will assume all the functions of a General meeting. All members must be notified with 3 months notice. The Chairperson shall also chair the General meetings. If the Chairperson is not present the vice chairperson presides over the meeting. There shall be a two thirds quorum whenever a General meeting is held or Board Meetings is held. Minutes of the General assembly must be taken, kept safely and always be on hand for members to consult.

8.5 8.6 8.7

9.

GENERAL MEETINGS 9.1 9.2 The General Meeting will be held every four years. At the General Meeting the following business, amongst others, must be dealt with: 9.2.1 9.2.2 9.2.3 9.2.4 9.2.5 9.2.6 9.2.7 9.2.8 9.2.9 Agree to the items to be discussed on the Agenda; Record the Members present along with any apologies for absence; Read and confirm the minutes of the previous General Meeting; Chairpersons report on behalf of the Board; Financial Report by the Treasurer; Election of the Board for the following four years; Appointment or confirmation of an independent auditor; General businesses; and Closure

10.

FINANCES 10.1 10.2 The financial resources derived by the Organisation are appropriated by the Board for carrying out the objectives of the organisation An independent Auditor shall be appointed at the General meeting. His or her duty is to audit and check on the finances of the organisation.

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10.3

The Chairperson and Treasurers responsibility is to control the day to day finances of the organisation and are the signatories. They shall arrange for all funds to be put into a bank account in the name of the organisation. They must also keep proper records of all the finances. The current statements of income and expenditure must be presented at General Meeting or whenever requested by the Board. The board can appoint among the staff of the secretariat the 3rd signatory to the bank. The financial year of the organisation starts on 1st April and ends on 31st March.

10.4 10.5 11.

INCOME AND PROPERTY 11.1 11.2 The organisation will keep a record of everything it owns The organisation may not give any of its money or property to its members or office bearers. The only time it may do this is when it pays for work that a member or office bearer has done for the organization. The payment must be a reasonable amount for the work that has been done. A member of the organisation can only claim money back from the organisation for expenses which he or she has paid for on behalf of the organisation that has been mandated by the management committee (herein to be referred to as the Board). The members or office bearers have no rights over property that belongs to the organisation. The office bearers cannot be held personally liable for any loss suffered by any person as a result of an act or omission which occurs in good faith while the office bearers are performing functions for or on behalf of the organisation. Income may be derived from revenue from its membership fees, activities and grants, donations and legacies from public, private or individual organisations. A Bank account will be opened in the name of the Pan African Network of People with Psychosocial Disabilities. All financial transactions of the Organisation will be conducted by means of this banking account.

11.3

11.4 11.5

11.6 11.7

12.

AMENDMENT OF THE CONSTITUTION

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12.1 12.2 12.3 12.4

The Constitution can be changed by a resolution The Resolution may be accepted if two thirds of the members are present at the meeting specifically convened for the purpose or at the General Meeting. The resolution must be approved by two thirds of the members who are present at the General Assembly. Notice of the General Meeting at which the amendment is to be proposed, must be given at least 14 days beforehand and must specify that the Constitution amendment will be discussed. No amendment shall be made which would have the effect of making the organization cease to exist.

12.5 13.

DISSOLUTION 13.1 The organization may close down if at least two thirds of the members present and voting at a meeting convened for the purpose of considering such a matter, are in favour for good reason of closing down. When the organisation closes down, it must pay off all its debts. If after this, there are residual assets, they must be transferred to another non-profit-making organisation with an objective similar to that of the organization. The Board will select the other organisation. Failing this, the High Court in which the country the organization operates will decide on the fate and allocation of the remaining funds of the organization.

13.2

13.3

We the assembly of PANUSP at this meeting on the 15th day of October 2011 at Cape Town, South Africa, hereby formally adopt this as the final and formal constitution.

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Name Mr. Gabor Gombos Mr. Action Amos

List of Participants for Seminar 13 and 14th October 2011 Cape Town

Appendix 4

Ms. Euyong Mbuen Ms. Daniel MwesigwaIga Ms. Robinah Nakanwagi Alambuya Mr. Mwape Mulubwa Ms. Sylvester Kantotoka Mr. Dan Ashirifi Taylor Ms. Janet Amegatcher Ms. Nii Lartey Addico Mr. Bernard Akumiah Mr. Sam Badege Ntazinda (absent) Ms. Rose Umutesi Ms. Alison Hillman Mr. Ronald Shaw Ms. Eliezer Robert Mdakilwa Ms. Pangarasi Mathias Msongore Ms. Sharon Kleintjes Mr. Moosa Salie Ms. Annie Robb Mr. Michael Migayo Njenga Ms. Susan Keter Ms. Helene Combrinck

Organization CRPD Committee/Facilitator Mental Heath Carers and Users of Malawi Mental Disability Advocacy Center Mental Health Uganda Mental Health Uganda Mental Health Users Network of Zambia Mental Health Users Network of Zambia MindFreedom Ghana MindFreedom Ghana MindFreedom Ghana MindFreedom Ghana National Organization of Users and Survivors Rwanda National Organization of Users and Survivors Rwanda OSI/Facilitator South African Mental Health Advocacy Movement Tanzanian Users and Survivors of Psychiatry Tanzanian Users and Survivors of Psychiatry The Ubuntu Centre The Ubuntu Centre The Ubuntu Centre Users and Survivors Kenya Users and Survivors Kenya University of Western Cape/Facilitator

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Appendix 5

Seminar Program 13 15 October

Strengthening the Pan African Network of Users and Survivors of Psychiatry for the Realization of the Rights of Persons with Psychosocial Disabilities on the African Continent Cape Town 13 15 October 2011

Day One: 13 October

9h00 9h10 9h10 9h30 9h30 10h00 10h00 10h30 Welcome Objectives of Seminar Helene Combrinck Introductions to Human Rights and the CRPD Helene Combrinck Drafting of the CRPD Gabor Gombos Selected Articles of CRPD and their relevance to Africa Helene Combrinck Implementation of the CRPD Helene Combrinck Civil Society engaging with CRPD Gabor Gombos Regional an International Mechanisms Helene Combrinck Summary of Day 1

10h30 11h00
11h00 12h30 13h30 15h00

Tea

12h30 13h30
14h30 15h30

Lunch

15h00 15h30
15h30 17h00 17h00 1710

Tea

94

Day Two: 14 October

9h00 9h10 9h10 10h30 Overview of Day 2 Reform of Mental Health Legislation in Africa Facilitated by: Alison Hillman and Gabor Gombos including 7 10 minute presentations by Dan Taylor, Mwape Mulubwa and Daniel Iga Introductions to Article 29 OHCHR Thematic Study on Political Participation Exercise Helene Combrinck Case Study: Kiss v Hungary Eyong Mbuen Discussions of Responses to OHCHR Exercise Identifying PANUSP priorities Helene Combrinck Summary of Day 2

10h30 11h00
11h00 12h30

Tea

12h30 13h30
13h30 14h15 14h15 15h30 15h30 17h00 17h00 1710

Lunch

15h00 15h30

Tea

Day Three: 15 October

9h00 10h00 10.30 10h30 Building Networks and Organizations Guest speaker: Shuaib Chalklen (UN Special Rapporteur) Reports from outgoing PANUSP Executive

10h30 11h00
11h00 13h00

Tea
PANUSP Constitution and Organizational Structures Judith van der Veen (CBM)

13h00 14h00
14h00 15h30

Lunch
Designing a Plan of Action Judith van der Veen

15h30 16h00
16h00 17h00

Tea
Elections of 2011 PANUSP Board

95