The papers presented in this special issue of Disability Studies Quarterly are the product of a long journey that began with a workshop on "Disability Rights in Kenya: Networks, Practices, and Resources," which was organized by Twaweza Communications with the support of the Ford Foundation. The June 13th-16th 2007 convening in Nairobi brought together disability scholars and activists from Kenya and The Ohio State University (OSU) to deliberate on contextual issues relating to matters touching on the broad subject of disability and its intersection with culture and human rights. That workshop was the culmination of a series of discussions between Twaweza Communications, OSU, and the Ford Foundation on a possible collaboration centered on questions of disability.
During a November 2005 visit to OSU it became apparent that there was the need for a sustained, cross-cultural engagement between the Kenyan and American teams and follow-up events were proposed, including research on disability rights in Kenya and a collaborative workshop to be held in Nairobi. That initial visit also allowed for an assessment of OSU's resources in Disability Studies and services, and useful discussions on culture and disability were held with students and faculty. It was clear from these interactions that a rights approach to disability interventions in Kenya would prove more effective and sustainable.
The struggle for human rights has been protracted and energy sapping at both global and local levels. In the case of the rights of people with disabilities, it was only in 1990 that the Economic and Social Council of the United Nations General Assembly passed resolution 1990/26 which gave authority to the Commission for Social Development to consider the establishment of an ad hoc committee, which would contribute to the equalization of opportunities for people with disabilities. The committee developed rules, based on The International Bill of Human Rights, comprising: The Universal Declaration of Human Rights, The Convention on the Elimination of All Forms of Discrimination Against Women, The International Covenant on Economic, Social and Cultural Rights, and The Convention on the Rights of the Child, as well as the World Program of Action Concerning Disabled Persons. The aim was to ensure that there are no obstacles for people with disabilities in the enjoyment of their fundamental rights. Similar efforts have been seen at the national level. For instance, the United States' Americans with Disabilities Act (1990) seeks, amongst other objectives, to eliminate discrimination against people with disabilities in various sectors such as employment, public services, public accommodations, telecommunications, and other services, and to put in place standards for the treatment of persons with disabilities (PWD) as well as vehicles for their enforcement (Americans with Disabilities Act: 5).
The ADA has clearly offered a template that others have tried to emulate. Ultimately, however, specific contextual challenges — for example the politics of financing implementation of disability laws, particularly where they exist in Africa — have meant that each society has distilled from international covenants only what they feel can be safely domesticated. In this regard it has been necessary for disability groups to harness political goodwill as a means to ensuring that they attain what should, in principle, be theirs by right; some groups have succeeded wildly where others have had to surmount serious obstacles. Perhaps the best instantiation of some of the triumphs of disability advocacy in Africa is the rare and clearly progressive case of the 1996 Ugandan Constitution, which recognizes the right of PWD to respect and human dignity and commits the State to develop sign language and to ensure the representation of people with disabilities in Parliament (see Articles 21, 32, 35, 36 and 78 of the Uganda Constitution). In comparison, even though the constitution of South Africa guarantees the rights of citizens with disabilities, it is not as elaborate as that of Uganda. In the case of Kenya, the current Constitution (under review) presents people with disabilities negatively and opens no doors for the respect of their rights (see for instance Sections 12 (1), 33, 34, and 41 (5)). However, there has been a long-drawn attempt at addressing the shortcomings of the Kenyan constitution by means of an Act of Parliament — The Persons with Disabilities Act (2003). Briefly, the torturous journey to this law might be sketched as follows.
On October 12, 1993, the Kenya Government, through the office of the Attorney General under the Law Reform Commission, set up a Task Force to review — and obviously to create where they did not previously exist — laws relating to persons with disabilities. The Task Force was supposed to complete its work by March 1995 but due to logistical problems its report was only completed in February 1997. Following this report and after much haggling over the content of the final draft, the Persons with Disabilities Act of 2003 was gazetted by the Government and some aspects of it became operational on January 9th 2004. During the 2007 workshop it was noted that many disability activists considered the 2003 Act to be deficient, in that it did not fully represent the findings of the Task Force and therefore needed to be reviewed. To this end, participants compared the findings and recommendations of the Task Force on Disability in Kenya with the Act itself and identified gaps and omissions. In this regard the 2007 workshop also provided an opportunity for a panel of legal experts and practitioners to critique the PWD Act (2003). For instance, whereas the Act stipulates, "an employee with a disability shall be entitled to exemption from tax on all income accruing from his employment," this privilege is taken away when the Minister in charge of Finance is given authority to determine who is exempted from tax and the terms of the exemption. Six years after the Act was gazetted, the clause on exemption of PWD from taxation — which enables PWD to service their equipment needs through the financial relief granted by law — has yet to be implemented; a tentative date of January 2010 has been given by the Finance Minister for the operationalization of this particular clause.
At another level it was noted that, although initial legislation in support of the rights of the disabled was passed in 2003, attention to social attitudes and mechanisms is only just beginning; even basic statistics are lacking and the rights of people with disabilities are not being addressed. On a positive note, this dearth of statistics might soon change given that one of the aims of the August 2009 national population census is to establish the number of PWD in Kenya. However, other contradictory stipulations have been identified to justify calls for the review of the PWD Act.
A principle aim of the 2007 workshop in Nairobi was to assess how disability policy within the framework of the National Plan of Action — arrived at during the January 2004 Conference on the African Decade of Persons with Disabilities, 1999-2009 (ILO, 2004: 9) — translates into actual practice. This was especially necessary given that the 2004 Conference had been held to reflect on what Kenya needed to do to ensure that the rights of PWD were enforced and to draw up the National Plan of Action. The primary objectives of the 2004 Conference were to:
- Develop and launch the Country Plan of Action for the Decade.
- Explore the status of PWD in Kenya and formulate a comprehensive Plan of Action.
- Share Decade experiences from other countries and draw lessons to inform the process of developing Kenya's National Decade Plan of Action.
- Create awareness and mobilize support towards the National Decade Plan of Action.
- Develop and put in place mechanisms for coordinating, monitoring, and evaluating the Country Plan of Action.
The 2004 Conference came up with the following recommendations:
- That accurate statistics be gathered on persons with disabilities to enable targeted planning.
- The newly passed Disability Act be used as a platform to develop policies to enable persons with disabilities to enjoy their rights and contribute to national development.
- Disability organizations should develop a unified vision and voice in tackling disability.
- The disability movement should adopt a rights-based approach and take advantage of the goodwill of the government to develop and strategize plans and priorities for action.
- Kenya should learn from other countries and not reinvent the wheel.
- The print and electronic media should be given newsworthy items for coverage.
- Lobbying and advocacy for the rights of PWD must include poverty and HIV/AIDS through capacity building, intense awareness campaigns, and opening Voluntary Counseling and Testing Centers (VCTs) targeting persons with disabilities.
These recommendations point to the direction that disability work in Kenya might take. For instance they suggest some possible research areas as well as practical intervention mechanisms.
The National Plan of Action provides the road map for disability work in the country. It focuses on the following key areas: policy and legislation; participation and self-representation; quality service provision; special groups; children, youth, women, and elderly persons with disabilities; universal design; preventive measures; capacity building; resource mobilization; advocacy and awareness; and coordination, monitoring, and evaluation. One of the things that the 2007 Nairobi workshop sought to do was to establish how far the Action Plan was being implemented and how it could benefit from work being undertaken in the United States. Furthermore, given that the Africa Decade of Persons with Disabilities (1999-2009) is drawing to a close, what is the status of persons with disabilities in Kenya? This question remains as relevant today as it was during the workshop in 2007.
Overall, the Nairobi convening sought to establish a network through which community organizations and academicians in Kenya and the United States could venture into collaborations as well as learn from each other. It is not vain to hope that at least one Kenyan university should explore how a Disability Studies program could be established. The workshop had also aimed at giving academicians an opportunity to develop meaningful conversation across disciplinary and international differences; disciplines as wide-ranging as sports, history, religion, and cultural studies were brought to bear upon specific issues related to disability. Further, the workshop enabled participants to see how scholars and activists are coming together to work on ground-level sensitization and support campaigns for the rights of people with disabilities, and how these links work at both local and international levels. Academicians, governments, and civil society can and should all be involved in the generation of knowledge on disability. It is hoped that these continuing efforts provide a basis for broader implementation of disability-friendly interventions and that, in the case of Kenya, it will pave the way for sustained work on PWD rights. Such work also allows for other ways of understanding disability.
The papers in this volume are a richly textured blend of academic presentations interwoven with profound personal narratives of disability. It could not have been otherwise given the complex nature of the subject at hand. The meaning of being a PWD in every day Kenya was communicated powerfully through the personal experience narratives of individuals with disabilities as well as minders of such persons. Comprising the opening section of this volume — "Personal Narratives and Reactions to the Workshop" — these narratives have been reproduced here as a background against which some of the academic discussions on culture and rights might be viewed. For instance, there is the poignant narrative of Nereas Hirst, mother to a daughter with Down's Syndrome; against many odds she describes the joys of nurturing such a child through life and the lessons about life that she, the mother, has been taught by the daughter. There is the story of a woman banker, Beneditta Ngina Gathecha, whose family is only too eager to deride her disability while at the same time ironically considering her to be an economic "asset"; it is the story of dehumanization and humiliation rolled into common familial dependency. Then there is Nafisa Khanbhai, a Kenyan Indian woman who is largely isolated by her community on account of her being disabled as well as by her countrymen, who see her as an Indian; it is a case of triple marginalization, as gender and race are brought to bear upon disability. Although the story of visually challenged Paraplegic Olympics marathon gold-medalist, Henry Wanyoike, has not been reproduced here from the workshop, his story about how he willed himself out of the pits of despair, occasioned by the sudden onset of total loss of sight one fateful night, gave rise to much thought amongst the workshop's participants — "I lost my sight but I gained insight" is a favorite phrase of Wanyoike's, which allows one to think of disability broadly as a legitimate alternative — perhaps one might even say in some circumstances "privileged" — way of experiencing the world. An interview conducted by Philip Armstrong and Nina Berman with Theodoto Ressa further contributes to the autobiographical narratives. Ressa reflects upon growing up with a disability in Kenya and foregrounds his struggle to receive an education. His persistence won him a Ford Foundation/IFP scholarship to pursue further studies in the USA (which led to his coming to OSU). His thoughtful comments address a wide range of issues related to disability in past and current Kenya. Finally, Marian Lupo and Brenda Brueggemann, both of The Ohio State University, provide two different perspectives on the Nairobi workshop. Lupo reviews her experience at the conference and adds reflections on the link between notions of the human body as economic resource and prejudice against the disabled as disvalued commodities. She praises the Kenyan approach to disability, which is "from a uniquely humane and grounded perspective, one that considers war, gender discrimination, and lack of resources as key components of what is a disabling society." Brenda Brueggemann also offers her thoughts on the 2007 workshop. Her account of what she calls one of the most "dense learning and living, travel and research experiences" of her life is testimony to the productive exchange between scholars and activists from two different countries. Brueggemann emphasizes that the comparative perspective allowed new insights, especially regarding the distinct priorities, approaches, and resources that are being pursued in different locations. She concludes by outlining a number of concrete proposals regarding future challenges and potential collaborations.
The scholarly contributions gathered in this volume are divided into two parts. The first part, "Disability and Culture: Folklore, Religion, and Identity," brings together analyses that investigate mainstream views on disability. Taken together, the essays identify persistent beliefs found in folklore, religious practices, and other cultural expressions that create significant impediments to the human rights situation of PWD. The section opens with Kimani Njogu's commentary on the role of the media in Kenya in relation to disability. While the media tends to reproduce reductive or stereotypical images of disability, Njogu argues that the industry can play a pivotal role in attitude and policy change at household, community, and national levels, at the same time as ensuring the implementation of policies that protect the rights of PWD. Mbugua wa-Mungai's essay draws on research conducted at the Kakuma refugee camp, which hosts refugees from eight different countries. Wa-Mungai has gathered vocabulary used to talk about disabilities in Lingala, Dinka, Teso, Acholi, and Gĩkũy&ũ, and also reviews Gĩkũy&ũ and Kiswahili proverbs and popular songs. His analysis provides evidence of the ways in which language enables society to use the concept of disability in constructing ideals of normativity and health. Kennedy Walibora Waliaula offers additional proof that discriminatory beliefs about disability are manifest in language. He analyzes Kiswahili proverbs and terms that refer to disability, and unmasks the excluding gestures inherent in so many expressions used to name the disabled. Pauline A. Otieno focuses on the role of religious prejudice against PWD. Reviewing the origin of the Christian prejudice against PWD in the Biblical tradition, she demonstrates that an alternative approach can also be found in the same Christian tradition. Otieno highlights the crucial potential of this alternative Christian tradition to realizing and protecting the human rights of PWD. Finally, Margaret Wangui Murugami reviews challenges PWD face as a result of dominant society's ideas of normativity, particularly regarding healthy bodies and youth. Society imposes severe restrictions on the formation of a positive identity for disabled persons. These limitations can be addressed, Murugami argues, through the active combating of stereotypes, prejudices, and harmful practices, and also by stressing the capabilities and achievements of PWD.
The last section explores various facets of the relationship between "Disability, Communities, and the State." S. K. Tororei assesses various issues that concern the right of PWD to work, such as attitudes found among employers and disabled employees, and conditions at the workplace. He advocates a strong role for governmental and non-governmental organizations in the process of creating adequate working conditions for PWD, and stresses that both employer and employee need assistance. Finally, he insists that humanitarian concerns ought to outweigh economic objectives. Philip Armstrong responds to the pervasive appeals to rights discourse during the workshop by addressing the conflicts and paradoxes opened up between rights as human and universal and rights as geopolitically circumscribed and historically contingent. Drawing from a number of recent texts questioning the presuppositions inherent in human rights discourse, he argues that it is these same conflicts and paradoxes that shape and even over-determine the workshop's initiative to reconfigure Kenya's 2003 Disability Act. Ruth Ndung'u and Mathew Kinyua focus on the challenges facing persons with language and speech disorders. Their research assesses the significant link between cultural beliefs and practices on the one hand and language and speech disorders on the other. They argue that new assessment methods and treatment protocols are needed that factor in cultural beliefs and practices, particularly those related to gender, age, communication, and community structures. Nina Berman also elaborates on the need to take local knowledge into consideration. She presents two case studies, on the Kwale Health Forum and the Kwale District Eye Centre, which serve here as exemplary models for the successful networking of local resources and collaboration with a wide range of community members. Berman argues that community-based networks and approaches to disability-related needs are essential to advancing the situation of persons with disabilities. Mwangi P. Wanderi, Andanje Mwisukha, and Peter W. Bukhala stress the importance of exercise for strengthening the body, for enhancing recovery from diseases, and for prevention and care of mental problems, to be shared by people with and without disabilities. Referring to the Paralympics movement, which ensures that persons with disabilities are not marginalized in local and global society, the essay reviews the various sports programs that have been established in Kenya for PWD. Lastly, Michael Karanja discusses the position of PWD in the refugee camps Dadaab and Kakuma. The number of disabled persons among the refugees is high, but their specific needs are rarely addressed, often not even acknowledged. Karanja suggests that increasing the visibility of PWD, including them in planning programs, sensitizing camp managers, and working with parents of disabled children, are crucial to addressing the situation of PWD in the refugee camps.
The editors of this volume would like to express their deepest gratitude to Brenda Brueggemann and Scott Danforth for their invitation and encouragement to edit this volume of DSQ, to Jennifer Dunkle and James Crowsley in the DSQ office for their help in editing the volume, to Dorry Noyes for facilitating the initial contact between the OSU and Kenyan teams, and to the former College of Humanities and present College of Arts and Sciences at OSU, the Kirwan Institute for the Study of Race and Ethnicity at OSU, and the Ford Foundation, for their generous financial support.
Works Cited
- Americans with Disabilities Act (1990), as amended. http://www.ada.gov/pubs/ada.htm
- Constitution of the Republic of Uganda (1995). http://www.ugandawiki.ug/Image:Constitution_1995.pdf
- International Labour Office (2004). Kenya Country Profile: "Employment of People with Disabilities: The Impact of Legislation (East Africa)." http://www.ilo.org/skills/what/pubs/lang--en/docName--WCMS_107837/index.htm
- Kenya Constitution. http://www.lawafrica.com/constitution/index.asp
- Persons with Disability Act (2003). Kenya Gazette Supplement No. 111 (Acts No. 15). Nairobi, 9th January 2004.
- The Constitution of the Republic of South Africa (1996). Act 108 of 1996 as adopted on 8 May 1996 and amended 11 October 1996 by the Constitutional Assembly. http://www.info.gov.za/documents/constitution/index.htm
- United Nations Documents, Resolution 1990/26, Equalization of Opportunities for Disabled Persons: The Economic and Social Council 13th Plenary Meeting, 24 May 1990 http://www.dinf.ne.jp/doc/english/intl/un_dinf/un_e199026.html