FINAL REPORT

THE NATIONAL SPINAL INJURY HOSPITAL

NAME: GACHARA W. JUDY SUMMER 2009/07/31

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The Perception and Reality of Disability: Case study Kenya National Spinal Injury Hospital

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TABLE OF CONTENTS Acknowledgements.................................................................................................. Page 4 Introduction...............................................................................................................Page 5 Chapter 1:Perception and Reality of Disability.........................................................Page 8 Products and Technology..................................................................Page 8 Support and Relationships.................................................................Page 9 Attitude and Services........................................................................Page 9 Natural environment and Human made changes...............................Page 10 Systems and Policies in place............................................................Page 11

Conclusion..................................................................................................................Page 12 Reference....................................................................................................................Page 13

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ACKNOWLEDGMENTS To all the staff at the Kenya National Spinal Injury Hospital for their generous sharing of information and taking the time to answer questions and the patients for their sincerity and kindness during my whole community service.

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INTRODUCTION ‘Disability resides in the Society not in the Person’ (Kenya National Survey on Persons with Disabilities, 2007) Disability and poverty are intricately interlinked. The presence of a disability can trap people in a life of poverty because of the barriers people with disabilities face in taking part in education, employment, social activities, and indeed all aspects of life. Furthermore, Poverty can cause disability with its associated malnutrition, poor health services and sanitation, and unsafe living and working conditions. Recognizing the crucial link between equity, disability, and poverty, in 2002, the World Bank embarked on mainstreaming disability into Bank operations and analysis (World Bank, 2002). In 2006, the United Nations adopted the International Convention on Rights of Disabled People, and many governments and international development agencies are turning their attention to the goal of including disabled people in development. Reported disability prevalence rates from around the world vary dramatically. In the past, many African countries have reported disability prevalence rates in the order of 1-5%. This far below rates reported in some European countries (15-20%). That is not to suggest that African rates should be as high, or higher than those seen in western societies-but there is a real fear of underreporting among many African countries (Kenya National Survey on persons with DisabilitiesKNSPD, 2007). For example from under 1% in Kenya and Bangladesh to 20% in New Zealand, this variation is caused by several factors: differing definitions of disability, different methodologies of data collection, and variation in the quality of study design (Mont, 2007). This situation is complicated further by the idea that there is no single correct definition of disability, that the nature and severity of disabilities vary greatly, and that how one measures disability differs depending on the purpose for measuring it. According to Mont’s ‘Measuring Disability Prevalence’, the three main purposes of measuring disability are, determine level of dependency that help in macro-economic planning of the country, designing service provision in the aim of improving the quality of life of the people and equalizing opportunities- that is to level the playing field in employment, access to health care and education.
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According to the World health Organisation international classifications, the term ‘persons with disabilities’ is used to apply to all persons with disabilities including those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various attitudinal and environmental barriers, hinders their full and effective participation in society on an equal basis with others (World Health Organization, 2009). It is also important to note that depending on the role that the person is assumed to take in his or her community a person with disabilities may be regarded as a person with a disability in one society or setting, but not in another. The Kenya Disability Bill 2003 defines disability as “a physical, sensory, mental or other impairment, including a visual, hearing or physical disability, which has a substantial long-term adverse effect on a person’s ability to carry out usual day-to-day activities” (KNSPD, 2007). Given the current definition of persons with disabilities in Kenya, it is clear that the interaction between persons with disabilities and the environment is not taken into consideration. It is the failure to recognize this important fact that has led to the current unsuccessful rehabilitation of persons with disabilities into society. This ultimately leads to full dependency on family, which is strenuous financially and mentally. Therefore, it is apparent that disability is a socially created problem and thus as a matter of full integration of individuals into society. ‘Disability is not inability’ is a commonly used saying in the attempt to curb stigmatization of persons with disabilities. However, on closer examination, many people in Kenya labeled or considered as disabled are in essence not disabled but rather have impairments. It is the lack of proper infrastructure and unsuccessful integration of persons with these impairments that consequently restricts their ability to perform activities within their society. In most parts of the world, there are deep and persistent negative stereotypes and prejudices against persons with certain conditions and differences. In Kenya, these attitudes themselves have contributed to a negative image of persons with disabilities. Take the language used to refer to persons with disabilities; it has played a significant role in the persistence of negative stereotypes. Clearly, terms such as “crippled” or “mentally retarded” are derogative. Other terms such as “wheelchair-bound” or “disabled persons” emphasize the disability before the person.
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Hence, disability should be viewed as the result of the interaction between a person and his or her environment. The perception and reality of disability also depends on the technologies, assistance and services available, as well as on cultural considerations. The World Bank has identified five environmental barriers (World Bank, 2002). that have contributed the most in hindering full participation of persons with disabilities in different countries. These are Products and Technology, Support and relationships, Attitude and services, Natural environment and human made changes, Systems and policies Using observations and experiences at the Kenya National Spinal Injury Hospital this paper examines the environmental factors that restrict participation of persons with disability and ways to prevent; rehabilitate; and equalize opportunities for persons with disability in Kenya. This paper will however only examine persons with disability as a result of spinal injuries, thus does not include visual, mental or any hearing impairments.

CHAPTER 1-Perception and Reality of Disability
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Prior to my community service time at the National Spinal Injury Hospital (NSIH), I was not fully aware of the extent of hardship that persons with disability face. My perception just like that of other Kenyans who may not have had neither direct nor indirect contact with somebody with a disability, my perceptions were rather elementary. Although aware of the plight experienced, the extent and severity of the situation was still obscured. The reality is about 600million people in Africa live with disabilities of various types, and the number is increasing due to rise of road accidents, violence and diseases as a result of poor health care services (United Nations Statistics Division, 2007-2008). The majority of persons with disabilities live in low-income countries; most are poor and have limited to no access to basic services, including rehabilitation facilities. Undoubtedly, this is the case in Kenya, with NSIH as the only spinal injury hospital in the whole of sub-Sahara Africa. People with disabilities benefit from assistive devices and technologies such as wheelchairs and prostheses, with current innovation even specialized software and hardware that increase mobility. With the aid of this, an individual is able to enhance their functional abilities, and are hence better able to live independently and participate as equal citizens in their societies. Unfortunately, most of the people who need these services have no access to them. The NSIH faces tremendous set back as it lacks enough physiotherapy equipment, this they attribute to the lack of funds from the government. For example studies have shown that with consistent hydrotherapy, paraplegic persons (have no mobility on their lower limbs) can regain partial to full muscle control. However, at the hospital hydrotherapy is not available. In fact the equipment is not only decrepit but was also not adequate for all their patients. Some of the equipment is rusted and others damaged sitting at a corner waiting perhaps for a time they will be repaired or when the hospital will have the money to replace them.The scarcity of personnel trained to manage the provision of such devices and technologies especially at provincial and district levels. While at the NSIH I came to realize that there is not enough qualified staff, for example plastic surgeons perform treatment on patients as opposed to the chiropractor. At the NSIH patients, pay 10,000Ksh per month for admission and physiotherapy a cheaper alternative
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to private hospitals in the country where despite having better resources their costs are prohibitive. Support and Relationships Support and relationships is key to the rehabilitation and even recovery of persons with disability. According to counselors at the NSIH’s Counseling and Rehabilitation unit, counseling session that emphasis on positive thinking and acceptance of their state is perhaps the most reliable method for ascertaining that persons with disabilities are independent not only socially but also economically and becoming active members of their community. In addition to the counseling, family support is also imperative. Persons with disability often feel and think that they are a burden to the family worsened by stigmatisation by family members who may refuse to care for the individual, depression may kick in ultimately preventing the full participation of the individual in his/her society as he/she is not able to be independent and engage in any activities.

Attitudes and Services In 1992, the United Nations proclaimed 3 December of each year as International Day of Disabled Persons with the aim of promoting a better understanding about disability issues and increasing awareness of gains to be derived from the integration of disabled persons in every aspect of political, social economic and cultural life (Mont, 2007). However it was not until 2006 that the UN General Assembly adopted the Rights of persons with Disabilities that required all countries to ensure that people with disabilities are granted equality under the law and freedom from discrimination (KNSPD, 2007). Discrimination of persons with disability occurs more often than anyone realizes. Interviewing patients at the National Spinal Injury Hospital, I learned of unfair treatment that they often face outside the hospital. Lining up in government institutions they say, people jump ahead of them on the line despite queuing for hours and even being ignored by service tellers. Over the past years there have been cases of a person being literary lifted off his/her wheel chair placed on the ground and their wheel chair stolen, they even lack access to HIV/AIDS facilities this amounts not only to discrimination on the basis of disability
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but also denial of access. What is unfortunate is that the government of Kenya is yet to do anything on these issues policy frameworks to counter discrimination are totally nonexistent. The natural environment and human made changes A person in a wheelchair might have difficulties securing employment not because of their condition but due to the environmental barriers such as inaccessible buses or staircases in the workplace that obstruct his or her access. Public transport within and around the city is cumbersome and stressful for anyone, now consider for persons with disabilities. Nairobi’s infrastructure is characterised by huge potholes, motorists, cyclists, pedestrians and cart pullers all on one road, this is in no way friendly, making it that much more difficult to get around thus even going to work becomes strenuous not to mention one’s safety is compromised. Perhaps the well known only wheelchair friendly public infrastructure in Nairobi is the Mbagathi Road flyovers that have ramps. Therefore steps are being taken towards catering for this part of the population, however the rate and extent is minimum. Public buildings especially do not accommodate persons with disabilities, it is common to find that absolutely no thought was put in mind while constructing them since there may be no lifts, or ramps on doorways and even basic things such as toilets are inaccessible. Rehabilitation not only means being able to be economically independent but it also calls for persons to be able to participate in the social and recreational activities just like everyone else. Persons with disabilities face difficulty in engaging in social recreational activities, their exclusion from these activities is the greatest set back, since these services do not take into consideration how to fit the needs of people with disabilities with their services. However, immense efforts are being made specifically by the Disability tourism Niche Africa Holidays. Disability Tourism in Africa is one of the concepts in the tourism industry, every human being has a social right to go for tours as any other human being on earth (Niche Africa Holidays, 2009). This is a concept whereby persons with physical impairments in society have access to tourism.

Systems and Policies in place
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Policy leadership that sets standards, guidelines and protocol to serve people with various disabilities is integral to making the environment conducive for persons with disability (Disability Kenya, 2006). In Kenya, disability information that can be used for planning is not readily available. Most of the data on disability available is often found in ministries, department or project specific, depending on the services or activities being implemented by that particular organisation. In the absence of reliable data on disability, it is difficult to formulate policies that affect the lives of persons with disabilities. Therefore, serious thought needs to be put in developing policy framework that effectively integrates disability into imperative public services such as national health, HIV/AIDS programs among others. National Census of Kenya estimates that 10% of the population have a disability however it has no data on specific categories of disability (Disability Kenya, 2006). This means that they cannot identify how many are deaf, blind, physically challenged or mentally handicapped. Evidently there is need for the government to take leadership and set up the background for the second National Demographic Health Survey or the next National Population Census to be made disability-friendly. In the 35th session of the General Assembly the African Union council of Ministers and heads of sates endorsed the period 2000-2009 as the African decade of persons with disability (United Nations Statistics Division, 2009). This was with the view that it will give more meaningful and systematic approach in how to tackle issues of persons with disabilities in Africa. For the total inclusion of persons with disabilities into the family, community and national life systems and polices need to be in place to support various initiatives in arriving at this goal. These policies will not only aid in rehabilitation but also poverty reduction, strengthening of Kenyan voices of persons with disabilities by increasing their involvement and consultations in all matters that concern them in all levels. In addition to developing policies, promote the interest of persons with disabilities through setting up of legislation.

CONCLUSION
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Disability is rather an attribute of environmental social construct and until we restructure the environment and perceptions to encompass and support persons with disability that we can reduce the dependency ratio this ultimately improves the overall quality of life. In 1982, the General Assembly adopted the World Programme of Action concerning Disabled Persons. The Programme identified three distinct areas in the disability policy: prevention; rehabilitation; and equalization of opportunities (Mont, 2007). These areas fully encompass the blueprints into improving the state of persons with disabilities all over the world. Prevention of spinal injury cases may only be realistic for road accident injuries, which in Kenya is a great concern. Thus by improving the state of roads and providing safe walking paths and flyovers and consistent monitoring of the public transport to ascertain they keep with the speed limit and capacity. These seemingly obvious measures could drastically reduce the number of road accidents especially in Nairobi and on long site prevent more occurrences of spinal injury. Rehabilitation is a goal-oriented and time-limited process aimed at enabling a person with impairment to reach the optimum mental, physical and/or social functional level, thus providing the individual with the tools to change her or his own life. This translates into technical aids such as wheelchairs, urine bags and bag straps plus other measures intended to facilitate social adjustment or readjustment. Equalization of opportunity as discussed in the paper is highly dependent on the relationship between persons with disabilities and their environment. It is imperative that the barriers created by society to full participation eliminated, equalization is only possible with complete inclusion of persons with disabilities. Equalization of opportunities thus needs the general system of society, such as the physical and cultural environment, housing and transportation, social and health services, educational and work opportunities, cultural and social life, including sports and recreational facilities, are accessible to all. Persons with disabilities ought not to be viewed solely on their impairments but as potential exists that can contribute to the economic well being of a society. However this cannot be possible if exclusion, discrimination are still the rule of the day.
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REFERENCES Disability Kenya. (12th October 2006). A Case for a National Disability Health & HIV/AIDS Policy Framework. Retrieved July 20, 2009, from www.disabilitykenya.org. Kenya National Survey on Persons with Disabilities -KNSPD. (July 2007). Interviewer and Training Manual. Nairobi: Government of Kenya. Mont, D. (March 2007). Measuring Disability Prevalence. Washington D.C.: HDNSP The World Bank.

Niche Africa Holidays. (2009). Disability Tourism in Africa. Retrieved June 30, 2009, from http://www.nicheafricaholidays.com/disability.php.

United Nations Statistics Division. (2008-2009). Human functioning and disability. New York: Oxford University Press.

World Bank. (2002). World development indicators. CD-ROM. Washington, D.C.: World Bank.

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World Health Organisation. (2009). Classification of Functioning Disability and Health –ICF. Retrieved 30 July 2009, from www.who.int/entity/classifications/icf/en/">International Classification of Functioning, Disability and Health (ICF).html

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