Contemporary Housing Issues in a Changing Europe
Independent Living for People with Disabilities in Kenya: Charting the Way Forward
Elizabeth Kamundia
Contents
1. Introduction 2
2. Defining independent living and identifying its key elements 4
3. Rationale for looking into independent living for people with disabilities in Kenya 10
4. Measures taken by the Government of Kenya towards providing support 17
5. Kenya’s state report to the Committee on the Rights of persons with disabilities 21
6. Recommendations and Conclusion 23
Independent Living for People with Disabilities in Kenya: Charting the Way Forward
1. Introduction
Prior to the Convention on the Rights of Persons with Disabilities (CRPD), no other human rights instrument contained an explicit right for all persons with disabilities to live in the community as equal citizens.[1] This paper explores the concept of independent living and living in the community from the perspective of a developing country - Kenya.
The paper starts off by defining independent living, identifying its key elements, looking into its historical and theoretical underpinnings and exploring the position taken by African countries on Article 19 during the negotiations of the CRPD. This section also examines the comments made to Spain and Tunisia by the Committee on the Rights of Persons with Disabilities (CRPD Committee) on Article 19. Second, the paper provides a rationale for exploring the right to independent living from the perspective of a developing country. It notes that although a significant amount of literature exists on the meaning of independent living with regard to developed countries, not much has been written from the perspective of developing countries. Third, it looks at measures taken by the government of Kenya towards providing support to persons with disabilities, noting that no single measure is taken specifically with the aim of enabling persons with disabilities to live independently. Forth, it looks at what Kenya reported under Article 19 to the CRPD Committee, and then concludes.
The paper argues that independent living is as relevant for developing countries as it is for developed countries. Indeed, it argues that the concept of independent living does exist in Africa, except that it has been expressed through different concepts. In Africa, emphasis has been placed on habilitation and rehabilitation aimed at enabling persons with disabilities achieve independence. The effect of this in Kenya has been a narrow focus on persons with physical and sensory disabilities, leaving out those with intellectual, psychosocial, dual diagnosis as well as those with other forms of multiple disabilities.[2]
2. Defining independent living and identifying its key elements
Article 19[3] provides that persons with disabilities have the right to live independently in the community. Community living (also known as independent living),[4] refers to persons with disabilities being able to live in their local communities as equal citizens, with the support that they need to participate in every-day life.[5] Independent living is about having the autonomy and independence to make decisions and having control over the choices and shape of one’s life. If support such as care in the home and personal assistance is needed to live in the community, they should be provided.[6]
Thus, the core elements of independent living are self determination, choice, autonomy, equal access, living in community and inclusion and participation. These elements are universal and not context specific.[7] Indeed, independent living ‘has been regarded as a concept rather than an issue requiring specific legal definition’.[8] Seen in this light, it is the philosophy underpinning the struggle by people with disabilities to achieve self determination, choice, autonomy, equal access, community inclusion and participation. Article 19 has been said to extend the traditional right of liberty. In the words of Kayess and French, Article 19 equates the right to liberty with the right of persons with disability to live in and be a part of the community.[9]
Article 19 is a clear demonstration of how the CRPD blurs the line traditionally established in human rights between the traditional civil and political rights and economic, social and cultural rights.[10] Indeed, it is hard to separate out the civil and political aspects and the social, economic and cultural aspects in the right to independent living.[11]
Historical and theoretical underpinnings of Article 19
Independent living is a civil rights movement of people with disabilities which grew in America at the end of the Sixties as a protest to clinical living conditions in institutions. The Independent Living Movement sees disablement primarily as a social and political problem. It follows the example of the issues and strategies of the black civil rights movement and of the feminist movement. The main issues are the articulation of one's own needs, self-determination, assistance geared to the consumer and participation in politics and administration.[12]
Theoretically, the right to independent living is grounded in the social model of disability,[13] which distinguishes between the impairments that people have and the oppression which they experience. Most importantly, it defines ‘disability’ as the social oppression, not the form of impairment.[14] This model is reflected in the CRPD which recognizes that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.[15]
Africa’s contribution to Article 19 during the negotiations of the CRPD
Article 19 of the CRPD is one of the Articles that saw a clear divide between the negotiating standpoints of the developing and the developed countries.[16] The issue presents differently in the North and in the South. The critical issue in the North is institutionalization. As Parker and Clements argue,
‘In many parts of Europe the predominant provision for disabled people (children as well as adults) continues to be institutionalisation (often for life)’.[17]
The critical issue in the South is unavailability of the required support services to enable independence and facilitate participation in the society.[18] Further, in most countries of the south, mutual caring and support in the community is a norm, and it is often felt that there is no need for disabled persons to live physically and financially apart from their families. The emphasis is on one becoming a contributing member of the family rather than to manage her/his own household alone. Thus, the concept of independent living associated with the developed countries is not always relevant in the developing countries.[19] As a result, during the negotiations, the South placed great emphasis on support to families taking care of persons with disabilities.[20] Further, states from the South emphasized the promotion of supportive assistance rather than an obligation to provide such assistance.[21]
CRPD Committee Comments to Spain and Tunisia on Article 19
With regard to Spain, the Committee expressed concern at the lack of resources and services to guarantee the right to live independently and to be included in the community, in particular in rural areas. It was also concerned that the choice of residence of persons with disabilities is limited by the availability of the necessary services,[22] and that those living in residential institutions are reported to have no alternative to institutionalization. Finally, the Committee expressed concern about linking eligibility of social services to a specific grade of disability.[23]
With regard to Tunisia, the Committee did not issue comments directly on Article 19. However, its comments on Article 7, the CRPD provision on the rights of children are pertinent. The Committee recommended that Tunisia ‘take steps to replace institutional care for boys and girls with disabilities with community based care’.[24]
Inter-linkages within the Convention
To get the full import of Article 19, one must beware of the linkages that exist throughout the Convention.[25] Article 19 has been classified alongside other autonomy and dignity articles, that is articles, 12, 18, 17 and 22 (legal capacity, liberty of movement and nationality, personal integrity and privacy respectively).[26] It is also closely linked with participation rights, enshrined in articles 9, 13, 27, 25, 24, 20, 26, 21 and 29 (accessibility, access to justice, employment, health, education, personal mobility, habilitation, participation in private and public life and freedom of expression respectively).[27] Article 12, on legal capacity, is particularly key to independent living. As argued by Gerard Quinn and Michael Stein ,
‘This right (to legal capacity) acknowledges that people with disabilities have an innate capacity to decide their destinies for themselves – where to live, who to live with, what education or employment to pursue – and to have those choices respected. And if there is to be an intervention on the part of the State, the primary impulse should be to support a residuum of capacity, and to intervene to support people to make decisions for themselves, with appropriate safeguards.[28]
While independent living is closely linked with the above rights, it is more than the sum of these rights.[29]
3. Rationale for looking into independent living for people with disabilities in Kenya
Although a significant amount of literature exists on the meaning of independent living with regard to developed countries, not much has been written from the perspective of developing countries.[30] This paper argues that there is need to explore independent living from the perspective of a developing country and offers four reasons for this position. The first reason is based on the argument that the core elements of independent living are universal and not context specific. The second reason is pragmatic and based on the statistics of persons living with disabilities in Kenya. The third reason is based on an assessment of the factual situation / lived reality of people with disabilities on the ground in Kenya. The fourth and final reason is the fact that Kenya has an enabling legal framework. Having ratified the CRPD, Kenya is required to report on its progress in the implementation of all the rights contained therein to the Committee on the Rights of Persons with Disabilities.
a) The elements of independent living are universal and not context specific[31]
Human rights are universal, and they are the natural born rights for every human being, universally.[32] Further, while the right to independent living, thus worded is only contained in the CRPD, it is not a new right, but rather, a creative interpretation of existing rights that has been specially tailored to apply to the context of persons with disabilities.[33]
According to the UK Office for disability issues,
‘Independent living’ does not mean doing things for yourself, or living on your own. Instead, it means having choice and control over the assistance and/or equipment needed to go about your daily life and having equal access to housing, transport and mobility, health, employment and education and training opportunities.[34]
Clearly, these issues are relevant to people with disabilities living both in developed and in developing countries.
b) Statistics
According to the 2009 Population and Housing Census report,[35] Kenya has a total population of 37,000,000 people. 76.7% live in rural areas whereas 32.3% live in urban areas. According to the Census Report, the population of persons with disabilities is 1,330,312 (647,689 - male and 682, 623 - female). However, this seems to be a gross underestimate in light of the World Report on Disability, 2011, which states that ‘Including children, over a billion people (or about 15% of the world’s population) were estimated to be living with disability’.[36] This would translate to about 5.5 million people in Kenya, most of who live with their families but without the necessary supports to ensure their participation and inclusion in the community. This issue is important because it affects a significant sector of the society.
c) The situation of people with disabilities in Kenya
The legal position of persons with disabilities in Kenya has radically improved since the early 2000s. In 2003, Kenya enacted the Persons with Disabilities Act, [37] which provided, for the first time, a right to non-discrimination on grounds of disability. In 2008, Kenya ratified the Convention on the Rights of Persons with Disabilities, which became part of Kenyan law with the promulgation of the Constitution of Kenya 2010.[38] However, despite these positive changes in the law, ‘the lives of people with disabilities in Kenya are marked by experiences of discrimination, prejudice and inequality’.[39]
As the rest of the world, the earliest efforts in addressing the issues of people with disabilities in Kenya were structured within the charity model.[40] While there has been a considerable move towards the social model of disability, it still remains difficult to incorporate in practice.[41] Hence, people with disabilities in Kenya continue to be viewed as tragic victims of impairment, and as the beneficiaries of charity, alms, and services – for which they should be grateful.[42] This is further complicated by the fact that people in the community often associate intellectual disabilities with mental illness or traditional beliefs such as curses and witchcraft.[43]
The majority of persons with disabilities in Kenya live with their families, and the primary responsibility for providing the necessary support is situated within the family.[44] In a study of people with disabilities in Kenya conducted by Benedicte and Lisbet in 2007, they note that,[45]
‘Individual independence can be a solution when the family is non-supportive, but we have seen that those who manage almost as a rule have a supportive family to rely on’.
Yet, a 2012 report carried out by Equal Rights Trust and Kenya Human Rights Commission, states as follows:
‘ERT’s interviews with persons with different forms of disability found that prejudice, stigma and discriminatory attitudes towards disability prevailed within families, and that the discriminatory treatment which persons with disabilities experienced in the home often had far-reaching consequences for their ability to participate equally in other areas of life.’[46]
Investigations carried out for the Universal Periodic Review found that approximately 74% of people with disabilities interviewed reported that they were denied the right to make decisions on issues affecting their own lives and described how they had been forced into situations against their will because they had been judged incapable of deciding on their own due to their disability.[47]