Choice, support and inclusion: Implementing article 19 of the CRPD in Kenya

2.1 Community living

This sub-section is aimed at elaborating the meaning of ‘community living’, since living as part of our communities serves as the basis for everything we do in life.16 This sub-section looks at the various ways in which the term ‘community’ has been defined. The rationale is that different definitions contain glimpses of the truth, and contribute to a fuller picture of the reality requiring definition. This section also explores related terms such as ‘communalism’ in an attempt to best capture how life in the community is lived in Kenya. As with most words in social sciences, the word ‘community’ is contested.17 In defining community from a sociological perspective, Delanty states that communities have been based on ethnicity, religion, class or politics. He notes that communities may be large or small; ‘thin’ or ‘thick’ attachments may underlie them; they may be locally based and globally organised; and affirmative or subversive in their relation to the established order. Further, communities may be traditional, modern, and even postmodern, reactionary and progressive. Delanty makes the point that for sociologists, community has traditionally designated a particular form of social organisation based on small groups such as neighbourhoods, the small town or a spatially bonded locality.18

Taylor writing in the context of communitarianism stresses the social nature of the individual as one that is quite literally embodied in moral relationships. The individual must be seen as rooted in the collective self.19 Hence, citizenship is based on a social concept of the individual as a member of a community.

The above discussion provides different elements of what ‘community’ means. This leads us to an exploration of what a ‘communal way of life’ entails. In this regard, Oduor in discussing communalism in the context of a traditional African ethical outlook states:

Communalism ... denotes that outlook which emphasises the social aspect of man's nature, holding that the individual's life can only find fulfilment when that individual co-operates with other members of the community, and puts the interests of the community before his own interests ... Consequently, these communities (traditional African communities) emphasised the need for every member to do his best to contribute towards the good of the community. 20

In this way of life, the common good trumps over individual good, social consensus over personal will, inter-dependence over self-dependence.21

Interviews undertaken for this study confirm the above discussion of communalism from an African perspective. They also provide insight into what constitutes a person who is considered a full member of the community in Kenya:

The other element about it (Article 19 of the CRPD) is about participation, participation around the community, and when you are participating in the community, we look at very basic things such as going to church, in Kenya we have over 80% Christians, so being able to go to church, to participate in weddings, in funerals, in circumcisions or rites of passage. That for us would be a person who is really accepted within the community, and can function in the community.22

An inherent part of the right to live in the community is freedom of choice, including freedom to define what ‘community’ means.23

One interviewee expressed various facets of community in the Kenyan context:

Africans are too together. You are still your mother’s child, son, daughter to death, and you still belong to Kikuyu, Luo, community to death. Independence is good but within a certain set up, that you are independent, you as a person with disability, yes, you can make your own decisions, but living, we’re living as a community ... We are inter-dependent [on] each other.24

These discussions help form a more comprehensive picture of what ‘community’ means. In the context of Kenya, the definition of community also depends on location - and would be slightly different between rural and urban areas. In rural Kenya where people tend to have the same place of abode over long durations of time, community of place is still the most common understanding of the term community. Belonging to the same ethnic group goes hand in hand with this, as well as participating in the rites of passage that are observed by that ethnic group. Within the urban areas in Kenya, communities form along other lines such as neighbourhood, leisure and religion, in terms of attending the same places of worship.25

According to the Kenya census of 2009,26 67.7 per cent of the people in Kenya live in rural areas while 32.3 per cent live in urban areas. All of the 12 interviewees interviewed for this study, and based in Kenya, felt that to date, to a large extent, Kenya retains a communal way of life. It was also clarified that in the urban areas, this is swiftly changing to more individualised lifestyles. There is increased rural urban migration, largely driven by a desire to find employment in urban areas. The affect of rural urban migration on PWDs is profound - as families move to urban areas, they lose the natural support of extended families and close knit communities. This further marginalises them. 27

From the foregoing, the one common denominator that all definitions of community seem to share is that the term community denotes belonging. A sense of belonging is key to the formation of one’s identity, and following this, to participation in the community. This is what has been denied to persons with disabilities, and is what article 19 of the CRPD seeks to remedy. Indeed, PWDs are often excluded from community life, and routinely denied full citizenship, with devastating effects. Taylor has examined the consequences of exclusion observing that our identity is partly shaped by recognition or its absence, often by the misrecognition of others, and so a person or group of people can suffer real damage if the people or society around them mirrors back a confining, demeaning or contemptible picture of themselves.28

This article uses ‘community living’ instead of ‘independent living’. The two terms have been said to be interchangeable.29 However, in the course of conducting interviews in Kenya, it was pointed out that ‘independence’ is not a particularly African ideal, and that ‘inter-dependence’ was a better-suited term, yet ‘inter-dependent living’ is not the terminology used in the CRPD. This study is therefore of the opinion that the concept of ‘community living’ would receive more acceptance in the Kenyan context using the term ‘community living’ as opposed to ‘independent living’.

2.2 Institutionalisation

In Kenya, institutionalisation occurs in the context of mental health care, and to some extent, the provision of education for children with disabilities in separate settings. Institutionalisation has been defined in various ways. According to the European Coalition for Community Living:

An institution is any place in which people who have been labelled as having a disability are isolated, segregated and/or compelled to live together. It is also any place in which people do not have, or are not allowed to exercise control over their lives and their day-to-day decisions. An institution is not defined merely by its size.30

Institutionalisation as used in this study refers to placing PWDs in a separate setting without access to the options and choices that are available to non-disabled people and in a way that detaches them from life in the community. It is important to note that many PWDs, particularly persons with psychosocial disabilities are institutionalised against their will.

The result of institutionalisation is that people are deprived of the normal roles that are available in the community and are unable to plan their own lives. Institutionalisation also restricts privacy, self-determination and freedom of action. This in turn makes it that much more difficult to integrate into community life.31

Further, institutionalisation increases the risk of exploitation, violence, neglect and abuse because life in institutions is conducted as a closed system, typically far from the public eye.32 A dismaying example of this in Kenya was brought to light in February 2011, when a CNN investigation revealed how people with psychosocial disabilities in Kenya are ‘dumped’ at Mathari Hospital, where they face serious neglect.33

3.1 Independent living and living in the community - the core right

Prior to the CRPD, no other human rights instrument contained an explicit right for all PWDs to live in the community as equal citizens.34 However, 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 PWDs.35

Article 19 of the CRPD requires states parties to recognise the equal right of PWDs to live in the community with choices equal to others and to facilitate the full inclusion and participation of PWDs in the community. Community living, also known as independent living in some jurisdictions and explained in Section 2.1 above,36 refers to PWDs being able to live in their local communities as equal citizens, with the support that they need to participate in every-day life.37

The core elements of independent living are self-determination, choice, autonomy, equal access, living in community, inclusion and participation. These elements are universal and not context specific.38 Indeed, independent living ‘has been regarded as a concept rather than an issue requiring specific legal definition’.39 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.40

Hammarberg, the 2006-2012 Council of Europe Commissioner for Human Rights, summarises the core elements of the right as follows:

Article 19 of the CRPD embodies a positive philosophy, which is about enabling people to live their lives to their fullest, within society. The core of the right, which is not covered by the sum of the other rights, is about neutralising the devastating isolation and loss of control over one’s life, wrought on people with disabilities because of their need for support against the background of an inaccessible society.41

Article 19 is a clear demonstration of how the CRPD blurs the traditional divide in the human rights discourse between the traditional civil and political rights and economic, social and cultural rights.42 It is difficult to distinguish the civil and political aspects from the social, economic and cultural aspects of the right to living independently and being included in the community.43

During the CRPD negotiations, states were aware that the article merged civil and political rights that are subject to immediate realisation with economic, social and political rights that are to be progressively realised. During the 7th session of the CRPD negotiations, Serbia and Montenegro pointed out the fact that article 19 merged civil and political rights with economic, social and political rights:

The rights in this article are primarily economic and social, and therefore subject to progressive realisation. This is complicated by the centrality of freedom of choice in the article, which has more immediate implementation implications. Countries in transition may have difficulty guaranteeing the right to freedom of choice in the context of personal assistance. How can personal assistance service be developed so that freedom of choice is more easily guaranteed?44

Scholars have also acknowledged the multifaceted nature of article 19. 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.45 It has also been stated that article 19(a) on choice ‘implies rights to self-determination in relation to matters affecting where and with whom a disabled person lives and the means by which disabled people are involved in the decisions affecting them.’46 Article 19(b), on access to a range of supports and services, ‘appears to recognise social and economic rights of disabled people’47 and is therefore subject to progressive realisation. Article 19(c), on equal access to mainstream services ‘is more in the nature of a civil and political right to non-discrimination in relation to accessing goods and services, including the duty to make reasonable accommodations, legislative measures for which are required with immediate effect, but which in practice (such as in relation to making premises accessible) may take time to be realised in practice’.48

3.2 The contribution of developing countries 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.49 The issue presents itself differently in developed countries and in developing countries.50 The critical issue in developed countries is institutionalisation. In this regard Parker and Clements point out that: ‘[i]n many parts of Europe the predominant provision for disabled people (children as well as adults) continues to be institutionalisation (often for life).’51

The critical issue in developing countries is unavailability of the required support services to enable independence and facilitate participation in the society.52 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 PWDs 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.53 As a result, during the negotiations, developing countries placed great emphasis on support to families taking care of PWDs.54 This support was envisaged as being both material and moral. It was emphasised that PWDs should be able to choose to live with their families, respecting social and cultural practices of family norms.55 Developing countries also emphasised that ‘independent living’ should be understood to refer to a principle and not the ‘independent living movement’,56 which may only apply to certain places or regions.57 Some questioned whether anyone living in the community can be truly independent, given the necessary interdependence between members of the community.58

Examining the stance of developing countries on article 19 during the CRPD negotiations is important because it sheds light on what they perceived the right to mean in their contexts and on what their fears with regard to it were.

3.3 The African human rights framework on disability

The 1981 African Charter on Human and Peoples’ Rights59 (Banjul Charter) recognises the rights of PWDs at the generic and specific levels.60 This recognition is also present in Africa’s other key human rights instruments such as the African Charter on the Rights and Welfare of the Child,61 the African Charter on Human and People's Rights on the Rights of Women in Africa62 and the African Youth Charter.63 At the generic level, the provisions in Africa’s human rights instruments, to the extent that they apply to individuals, do ensure protection of PWDs. Of particular importance, in this regard, are provisions which legislate equality and non-discrimination, including article 2 of the Banjul Charter,64 article 2 of the 1990 Children’s Charter65 and article 2 of the 2006 Youth Charter.66

At a more specific level, article 18(4) of the Banjul Charter provides that ‘the aged and the disabled have the right to special measures of protection in keeping with their physical or moral needs’.67 Article 13 of the Children’s Charter provides inter alia that ‘every child who is mentally or physically disabled shall have the right to special measures of protection in keeping with his physical and moral needs and under conditions which ensure his dignity, promote his self-reliance and active participation in the community’.68

Other instruments that have specific articles touching on PWDs include the 2003 Maputo Protocol (article 23),69 the Youth Charter (article 24),70 the Charter on Democracy, Elections and Governance (Democracy Charter - articles 8, 31, and 43),71 the 2009 African Union Convention for the Protection and Assistance of Internally Displaced Persons in Africa (Kampala Convention - article 9),72 and the Protocol on the Protection and Assistance to Internally Displaced Persons (article 473 and principles 4 and 1974). None of these instruments have a specific provision on people with disabilities living independently in the community.

4.1 The situation of PWDs in Kenya with regard to article 19

According to the 2009 Population and Housing Census report,75 Kenya has a total population of 38 610 097 people, 4.6 per cent of whom are PWDs. The 4.6 per cent disability prevalence figure is disputable on several grounds. Firstly, the World Report on Disability of 2011 estimates that including children, over a billion people, or about 15 per cent of the world’s population, live with disability.76 Secondly, there is a symbiotic relationship between poverty and disability. Hence, the current high levels of poverty in the country are likely to result in a greater proportion of the population being PWDs. Thirdly, there is a problem with the instruments used to identify PWDs, so that mild to moderate impairments frequently go undetected.77 Hence, the actual number of PWDs in Kenya is likely to be over five million people, most of who live with their families but without the necessary support to ensure their participation and inclusion in the community. Consequently, the issue of exclusion is important because it affects a significant sector of the society whose inclusion and participation article 19 seeks to ensure.

Several studies done in Kenya demonstrate that for the majority of PWDs, the objectives of article 19 have not been met.78 Interviews undertaken for this study reinforce this position. The interviews sought to shed light on the extent to which PWDs are included and participate in community life in Kenya. These are some of the responses from the interviewees:

They [PWDs] are locked up, or they are inside the houses, one because they don’t have mobility devices, and two even if they had mobility devices, the environmental barriers, are too many.79

and

We need to understand the challenges that face people with disabilities, high levels of poverty, societal stigma, and exclusion, which makes it of course very difficult, first of all for them to live independently within their community, and also to be able to make their own decisions ...80

It is important to note that the level of participation and involvement in community life depends on how adequately a person’s support needs are answered. The needs of people who require high support are often not met, leading to greater incidence of exclusion from society. This distinction has been expressed in terms of ‘double invisibility’ of some PWDs.81

It is also critical to note that the majority of PWDs in Kenya live with their families and the primary responsibility for providing the necessary support is situated within the family.82 In a study of people with disabilities in Kenya, conducted by Benedicte and Lisbet in 2007, it is noted:

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.83

In spite of the central role of families, a report published by Equal Rights Trust and Kenya Human Rights Commission in 2012, noted that prejudice, stigma and discriminatory attitudes towards disability prevailed within families with far-reaching consequences for the ability of PWDs to participate equally in other areas of life.84

In my interview with six self-advocates with intellectual disabilities,85 all of whom were living with their families, only one reported a largely positive life at home.

It is clear that the majority of PWDs in Kenya live with their families. However, as stated in section 2, institutionalisation does occur in the context of mental health care, and to some extent, the provision of education in separate settings for children with disabilities.

In the context of mental health care in Kenya, the only formalised support comes in the form of institutionalisation in psychiatric hospitals. Community based mental health care services in Kenya are limited86 and lack adequate funding to reach a wider portion of the population affected. Kenya has little provision for mental health; the government only spends 0.01 per cent of its health budget on mental health.87 To a large extent, persons with psychosocial disabilities either live in their homes without support, and without meaningful engagement in the community, or as homeless people particularly in urban areas or are institutionalised in psychiatric hospitals, usually Mathari hospital ‒ the main referral public mental hospital in Kenya.

With regard to education, learners with disabilities largely access education from primary school level onwards in boarding schools away from their families and their communities. This is largely due to a lack of choice of schools within their communities.88 As has been described in section 2, living in the community in Kenya is linked with one’s ethnic group. Special schools for learners with disabilities tend to be few and far between and are necessarily attended by learners with disabilities from all over the country. This inevitably entails a severance with one’s community from an early age and has negative implications on the fulfilment of article 19 for children with disabilities in Kenya.

It is clear from the foregoing that PWDs are not fully included in the community. Further data from the interviews confirms that there have not been many initiatives on community living in Kenya.

4.2 Kenya’s legal and policy framework related to article 19 of the CRPD

This section presents Kenya’s legal and policy framework as it relates to article 19. Critical analysis of this framework is carried out in section 5.

5.1 State obligations

With regard to article 19, what did Kenya bind itself to, when it implemented the CRPD? The answer lies in looking at the interplay between article 4 and article 19. In ratifying the CRPD, Kenya undertook to take effective and appropriate measures to facilitate the full enjoyment of the right of PWDs to live independently with choices equal to others. It also undertook to take effective and appropriate measures to facilitate PWDs’ ‘full participation and inclusion in the community’.

Part of the required action under article 19 is the explicit recognition of the right to community living.104 There is no community living policy in Kenya, and article 4(1)(a) may be said to require it as a first step towards ensuring community living for PWDs.

A look at the state obligations reveals that states have bound themselves up to a high ideal; and that is why it is important to keep in mind the principle of progressive realisation.105 Retrogressive measures are not permissible, unless a state can demonstrate that it has made every effort to use all resources at its disposal to meet its obligation.106

5.2 Recommendations

In the first place, article 19 read together with article 4 on state obligations requires Kenya to put in place a policy on community living for PWDs. The policy should be designed in such a way as to include persons with high support needs. The following are some of the issues that the policy on community living must address. Though presented as falling under the various sub-articles of article 19, in reality the recommendations cut across the entire article.

To promote choice among PWDs (article 19(a)) the community living policy should:

• Place an obligation on the state to make PWDs aware of their rights;
• Require that PWDs are consulted and actively involved in issues concerning them;
• Require the state to build awareness of the rights of PWDs among families, aiming at changing their attitudes towards their family member with disabilities;
• Provide financial support to families in recognition of their role as carers, and the effect this has on their earning capacity;
• Create flexible working hours for carers of PWDs who are in employment;
• Give clear guidelines on disability assessments, requiring that the applicant’s needs occupy a position of prime importance in the assessment;
• Embody a paradigm shift in the CRPD, towards a switch from institutionalisation and towards a community based mental health care system;
• Take into account the interplay between article 19, and the social economic rights provided for under article 43 of the Constitution of Kenya;
• Take into account the link between article 12 on legal capacity and article 19 and hence provide broad principles around the exercise of legal capacity for all persons addressing varying levels of support needs around decision-making;
• In consultation with all the relevant actors address situations where even after all the interventions to prevent severe mental breakdown from happening, the same occurs;
• Give advance directives in mental health care legal standing; and
• Provide for state funding for DPOs upon application.

To promote the provision of individualised support services (article 19(b)) the community living policy should:

• Make it clear that the efforts undertaken under Community Based Rehabilitation (CBR) are tied in directly with participation and inclusion in the community;
• Provide for state funded centres for community living, traditionally known as Centres for Independent Living; and
• Hold a vision for the future that foresees family members receiving direct payments for their caring work, beyond the support currently being provided that is linked to poverty eradication.

To promote equality of access to mainstream services and inclusion (article 19(c)) the community living policy should:

• Give concrete disability mainstreaming guidelines; and
• Provide for inclusive education within the community with the appropriate support to ensure that learners with disabilities access quality education.

Underlying the above recommendations is the need to:

• Address training for government workers on disability issues, and establish a sustainable way of raising awareness;
• Address access, in the broadest sense of the word including access to buildings, public transport and information; and
• Endorse universal design for all upcoming facilities.