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Below is a list of questions to serve as a framework for the discussion in this thread:
- What is important to consider in defining disability when developing policy?
- What are the biggest challenges to creating disability policies in developing countries? What are successful tactics employed to overcome these obstacles?
- How can stakeholders use the United Nations Convention on the Rights of Persons with Disabilities (CRPD) or other international platforms to influence/ prompt local and national disability policies?
I think what is important in considering the definition of disability is accepting the proposition that disability is best understood as the intersection of a human condition - whether mental or physical - and the built environment. Of course, room needs to be made for the embodiment of pain - pain can be disabling apart from discriminatory policies and practices.
One of the biggest challenges, if not the biggest, facing people with disabilities in developing countries is the toxic cocktail of the following elements: the lack of resources, including funding, to address the problem of inaccessiblity for people with disabilties and attitudes about, and biases against, people with disabilities. Disability is often a badge of shame which gets in the way of effective policy making.
How effective is the UNCRPD in influencing or prompting local and national disability policy? I like to think that at a minimum the UNCRPD provides us with moral leverage if not a protocol to fight discrimination.
Michael Schwartz eloquently sets forth the conceptualization of disability as a socio-contextual phenomenon which must be the starting point for any formulation of disability law, policy or programming. So difficult was the discussion of "definitions of disability" when we were drafting the Convention on the Rights of Persons with Disabilities that we opted to leave a definition out of Article 2 (which includes definitions of key terms) and instead reflected the sense of disability as a baseline in both Article 1 and preambular para. (e). The point was to reflect clearly the social model of disability and eschew limited or narrow definitions that exclude sub-groups of individuals with disabilities (and allow for the capture of perceived disability or associational disability discrimination within the ambit of national disability law). Reflecting on how this is playing out in the crafting of disability law, particularly in developing countries, I think we still have a way to go, and yet we are seeing concerted efforts to reflect the language of the CRPD in amny national law frameworks.
Defining disability remains a challenge to many states. The greatest challenge remains when there are benefits guaranteed to persons with disabilities such as social welfare, tax exemptions and employment quotas. Persons with invisible disability such as persons with psychosocial disability face multiple discrimination. For instance, domestically, persons with psychosocial disability initially faced challenges with tax exemptions since the authority in-charge did not consider psychosocial disability as a disability but more of a medical condition. Individuals with psychosocial disability were denied tax exemptions and only after the national commission on human rights and national council for persons with disability intervened that the appeal was accepted. This happened even when persons with psychosocial disability presents their registration cards from the National Council for Persons with Disabilities which is the body that registrars persons with disabilities and despite recognition of mental disability in the constitutional definition of 'disability. This is however changing as more awareness is created and authorities and general public understand disability from a social model as opposed to the medical. The second debate about definition of disability specifically in Kenyan context is the differentiation of disability in terms of 'severity' for purposes of those who should benefit from the social protection programme- the Cash transfer programme. The guidelines for identifying persons with disabilities for Cash Transfer (2011) define persons with severe disabilities as 'those who need permanent care including feeding , toiletry, protection from themselves or other persons , and from the environment. They also need intensive support on daily basis which therefore keeps their parents and guardians at home or close to them throughout'.
So the debate has been the magnitude of severity will be an individual aspect unlike fixed criteria. Nevertheless, this criteria cannot be ignored in our context where there is only limited social welfare program.
Ultimately to minimize controversies, the social model of defining persons as opposed to disability is recommended. However, specific policies and laws such as employment act, welfare policies shall require specific definition of disability and this varies from one context to another. The guiding principle is that such definition should meet the objective of policy without marginalizing certain types of disability or requiring a criteria that will disproportionately overburden people with certain types of disabilities.
Janet Lord's description of the struggle in defining disability under the UNCRPD is very helpful in understanding the importance of the social model of disability, one broad enough to capture the nuances of disability (perceived, associational, etc). On a personal level, disability for me is contextual, that is, it depends on where I am. For those who don't know me, I am profoundly deaf and identify myself as a member of the Deaf community (Janet Lord and Brent Elder, both who are hearing, are honorary members of the Deaf community because they have what I call a Deaf heart - more on this later). When I mingle with Deaf people at Deaf community events, I don't feel deaf (small d contrasted with Big D - small d denotes a physical condition whereas big D denotes a cultural association). When I mingle with hearing people who do not sign, I feel quite disabled. I imagine that is similar to how Black and Latino people feel when situated in an all-White environment.
As for a Deaf heart, that is a reference to those whose empathy and understanding of Deafness as a cultural phenomenon marks them as allies of the Deaf community, whether they sign or not. Just as associational discrimination exists, the reverse - associational empathy - exists, too.
Bound up, too, in the definition of deafness, whether a physical condition or a cultural phenomenon, is the definition of sign language. Some argue it is binary: ASL versus English, whereas others, including myself, argue it is best represented by the spectrum model - ranging along a spectrum of skill from traditional ASL to Standard English on the hands.
I guess what all this means is that defining disability and deafness and sign language is all about power, the power to decide what is normative, what goes, and who is included.
In short, I stand for an expansive, inclusive, complex, nuanced definition of disability.
Hi Michael,
I couldn't agree more that disability is context dependent. I find the work of Raewyn Connell is useful when framing the context of disability in the global South. Connell uses ontoformativity to frame disability. Connell (2011) describes ontoformativity as the following,
"The ontoformativity of social process constantly involves social embodiment. Social embodiment is not just a reflection, not just a reproduction, not just a citation. It is a process that generates, at every moment, new historical realities: new embodied possibilities, experiences, limitations and vulnerabilities for the people involved. So we need to understand disability as emerging through time" (p. 1371).
I like the notion of ontoformativity because it takes into account the complex notion of how disability is constructed in a variety of settings.
Brent
Connell, R. (2011). Southern bodies and disability: re-thinking concepts. Third World Quarterly, 32(8), 1369-1381.
Thanks, Brent, I'm always learning from you! I've asked my library to locate or buy the book so I can read it. May I suggest, too, that Meekoshka's work be put up for everyone to read?
Michael
Hi Michael,
Yes, greatidea re: Meekosha. There are also some other great critical disability scholars doing important work in the global South. Of course the list of scholars here is not an exhaustive list, and there are many more whose work I am not familiar with.
I also want to point out that this journal is an incredible newer publication that is free to access: http://dgsjournal.org
There is also a Global South Caucus within the Society for Disability Studies (SDS) if anyone is interested in joining. Here is a link to the Facebook page: https://www.facebook.com/groups/700482043331654/
Here is some work on critical disability studies/decolonizing methodologie/etc. that I often use to inform my own perspectives:
Connell, R. (2011). Southern bodies and disability: re-thinking concepts. Third World Quarterly, 32(8), 1369-1381.
Denzin, N. K., Lincoln, Y. S., & Smith, L. T. (Eds.). (2008). Handbook of critical and indigenous methodologies. Sage.
Elder, B. C., Damiani, M., Oswago, B. (2015). From attitudes to practice: Using inclusive teaching strategies in Kenyan primary schools. International Journal of Inclusive Education. http://dx.doi.org/10.1080/13603116.2015.1082648
Freire, P. (1970). Pedagogy of the oppressed, trans. Myra Bergman Ramos. New York: Continuum.
Goodley, D. (2013). Dis/entangling critical disability studies. Disability & Society, 28(5), 631-644.
Grech, S. (2015). Decolonising Eurocentric disability studies: why colonialism matters in the disability and global South debate. Social Identities, 1-16. DOI: 10.1080/13504630.2014.995347.
Grech, S. (2011). Recolonising debates or perpetuated coloniality? Decentring the spaces of disability, development and community in the global South. International Journal of Inclusive Education, 15(1), 87-100.
McConkey, R. (2014). Inclusive Education in Low-Income Countries.: A resource book for teacher educators, parent trainers and community development. Disability Innovations Africa.
McConkey, R., & Bradley, A. (2010). Promoting inclusive education in low income countries. A long walk to school: International research on inclusive education across the life-span, 7-26.
McConkey, R. & Mariga, L. (2010) Building social capital for inclusive education: Insights from Zanzibar. Journal of Research in Special Educational Needs, 11 (1), 12-19.
Meekosha, H. (1998). Body battles: Bodies, gender and disability. In T. Shakespeare (Ed.), The disability studies reader: Social science perspectives (pp. 163-180). London: Cassell.
Meekosha, H. (2011). Decolonising disability: Thinking and acting globally. Disability & Society, 26(6), 667-682.
Meekosha, H. (2004). Drifting down the gulf stream: navigating the cultures of disability studies. Disability & Society, 19(7), 721-733.
Meekosha, H. (2006). What the hell are you? An intercategorical analysis of race, ethnicity, gender and disability in the Australian body politic. Scandinavian Journal of Disability Research, 8(2-3), 161-176.
Meekosha, H., & Soldatic, K. (2011). Human rights and the Global South: The case of disability. Third World Quarterly, 32(8), 1383-1397.
Meekosha, H., & Shuttleworth, R. (2009). What's so 'critical' about critical disability studies?. Australian Journal of Human Rights, 15(1), 47.
Smith, L. T. (1999). Decolonizing methodologies: Research and indigenous peoples. Dunedin, New Zealand: University of Otago Press.
Stanton, C. R. (2014). Crossing methodological borders decolonizing community-based participatory research. Qualitative Inquiry, 20(5), 573-583.
Tikly, L., & Barrett, A. M. (Eds.). (2013). Education quality and social justice in the global south: Challenges for policy, practice and research. Routledge.
Wulfhorst, J. D., Eisenhauer, B. W., Gripne, S. L., & Ward, J. M. (2008). Core criteria and assessment of participatory research. Partnerships for empowerment: Participatory research for community-based natural resource management, 23-46.
Thank you Brent for this awesome reading list! I am finding that critical disability studies is immensely helpful for thinking through implementation of the CRPD- in a recent chapter I was asked to write on Article 30 and participation in cultural life, I have been reading a good bit of critical disability studies literature and it has really allowed me to think expansively about participation in cultural life beyond the obvious...
I am glad you are finding it helpful Janet. It certainly connected a lot of the dots for me historically and geographically. If you want anything electronically just let me know and I can share my Dropbox folder that has all the pdfs with you.
Great reading list, Brent, much appreciated! Thanks. I agree with Janet that Critical Disability Studies provides an useful lens for analyzing disability and for interrogating power relations in disability. CDS raises uncomfortable questions about hierarchy within disability, i.e., the role of race, class, gender and sexual identity in arranging relations amongst people with disabilities.
I've often marveled at the reproduction of hierarchy within the disability community. A wealthy White male heterosexual hearing wheelchair user versus a poor Latina Deaf lesbian - of the two, who has more cultural, social, political and economic capital? I think we all know it's the former, not the latter.
I suggest we have work to do - not only fighting discrimination from outside, but also fighting oppression within our own communities.
Marx would have totally agreed with Connell's materialist approach to disability: a process generating new realities under historical conditions at a given time.
I like the idea of disability "as emerging through time." That is certainly relevant to elder studies (no, not Elder studies! :-)
Michael
My background is in the development of sustainable inclusive education practices both in the United States and abroad. However, I think many of the consistent issues I come up against in disability and education can be applied to disability and human rights on a more global scale. For example, one thing I continuously come up against when researching effective best practices in inclusive education is actually finding literature that provides me with tangible results I can then apply to settings where I work. This gap in applicability of literature to real people living with disabilities in countries in the global South* is both frustrating and troubling. It is a gap that I strive to fill with my research and practice. The bottom line is that I want my work to increase the number of students with disabilities accessing inclusive education, AND I want other people to be able to adapt my work so they can apply it in meaningful ways to their own realities.
What are some good sources for accessible and applicable disability and human rights work?
What institutions and organizations are engaging with and promoting such work?
How can we network to promote this type of work?
What does this type of work actually LOOK like in practice in the global South?
What lessons can we learn from the global South and then apply to countries in the global North? What does that look like?
How can this work be effectively disseminated?
*I dislike the global South/global North binary but use it as it is frequently used in current disability rights literature. I want to discuss this issue throughout the week.
Brent Elder raises many important questions about how to practice what one preaches. His questions go to the heart of community organizing - they ask not why but how and what - how do we put into practice what we talk about and think about?
I want to chime in support of Brent's aversion to the global North/South binary. Surely the "global South" suffers from the legacy of colonialism, war, and the capitalist exploitation of labour and resources inflicted by certain countries of the "global North," but there are numerous communities of people with disabilities in the Northern hemisphere, particularly the United States, Europe and Japan, that live in conditions of poverty, unemployment, poor health and lack of educational resources, conditions that cry out for remedial action no less compelling than conditions in the Southern Hemisphere. The point here is not to compare, but to regard the entire world as unified by the need for strong enforcement of anti-discrimination law and the application of resources to address the human needs of people with disabilities.
Hi Micahel,
I couldn't agree more. When the global South is understood as more of a concept than a location, the implications of this work have transformative potential for many under-resourced institutions/organizations/people with disabilities, including those in the global North.
Brent
Brent asks some really insightful questions!
I have a few responses...First, we need to write up and share our results and practices! There are some good efforts out there, one of which is the Zero Project that collects and then assesses good CRPD implementation practices based on results. They select a few themes each year.
I have done some work around political participation and election access for persons with disabilities mainly in developing countries where DPOs have made great progress with few resources. I teamed up with my colleagues Michael Stein and Janos Fiala to write about them in the journal, Human Rights Practice.
Finally, the African Disability Rights Yearbook is doing a great job of publishing practical works which highlight advocacy in developing countries.
Article 19 - Living independently and being included in the community
States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs
Visually impaired people in the Gambia find it very hard to get employment. They are sometimes just not aware of the jobs available and nor are they prepared with the right education, skill sets or attitude.
Most know little about the technical and other aids or methods they could use at the workplace to carry out a wide range of tasks and responsibilities. At Start Now organization we educates and trains visually impaired people and prepares them to join the mainstream workforce as confident individuals but the most challenges faced is the prejudice by the society toward the visually impaired person, the society needs to be sensitize about the inclusive empowerment
Hi Charles,
I find that almost ALL people I speak to about disability and inclusion in Kenya say that the society needs to be "sensitized" to disability. What does sensitization look like in the Gambia? I am looking for materials that I can give to community members who are advocating for the inclusion of people with disabilities in in their communities. Anything tangible you have to share would greatly appreciated.
Brent
Thank you so very much. The Gambian community needs more sensitization to disability. Disable people in the Gambia are faced with prejudice and they are often marginalised and discriminated in society mostly with visually impaired people who are always seen as a borden by their family members. they are limited to only become classroom teachers and if this is not so they are face with no option but to become beggars in the streets. The society in general needs to be inform?sensitize about the capability and potentials of the disable people so as to create more inclusion in every societal engagement.if their are facilities and equipement that will help enable the disable person empower him/herself. with the right tools they will be the advocates standing up for their rights and inclusion in societal engagement and their the society will be convince with what thjey can do.
One idea I have about sensitization is the notion that sometimes having a powerful member of government speak out about disability and the need to promote equality and inclusion is a game changer. For example, Mary McAleese, President of Ireland from 1997-2011, who has a Deaf brother, spoke out often in support of disability rights. An eloquent and forceful speaker, Ms. McAleese changed hearts and minds in Ireland and elsewhere. She put disability on the map and forced people to think about accommodations and attitudes toward disability. Her advocacy paved the way for greater progress in Ireland.
Taking a leaf from the Irish playbook, I wonder if The Gambia has someone prominent who can speak out in support of people with disabilities, including those who are blind or visually impaired.
Not that it is a panacea, but it is one idea.
Michael
Thank you for those wonderful ideas, it is very important and helpful as you did mention to have a powerful member of the government speak out about disability and the need to promote equality and inclusion. it is an idea that we will incoperate in our disscussions and find ways of putting it to the responsible authorities. if you have any further ideas you can share with us to help improve the advocacy strategy here in the Gambia
thanks
Thank you for sharing your experience as a disability rights advocate in The Gambia! I wonder what types of disability rights empowerment would be effective in your community? Do you think that human rights education around the Convention on the Rights of Persons with Disabilities would be helpful? Or do you think that perhaps a more African regional approach that focuses on the African Charter of Human and Peoples' Rights would be more resonant? I know that the African Commission is based in The Gambia so I wonder if the disability community has had much engagement with it.
I wanted to share some human rights education materials with you in case they are helpful:
http://www.humanrightsyes.org
I would love your feedback and thoughts on how active learning approaches to disability rights sensitization could be useful in your community as a means of implementing Article 8 of the CRPD!
Thank you very much Janete. I will go by the CRPD. but from my thought i suggest the best way on how active learning approaches to disability right sensitization could be useful in my community is by conducting a sensitization campaign workshop were stakeholder and policy makers from different departments both from the public and private sectors will be gather and inform about disability issues. The approach that will be use to draw their attention for the inclusion of person with disabilities in societal engagements will be, sharing success strories of people with disability, role plays, demonstrations of potetentials or capabilities by disable people, engageging the media to talk about disability issues. Regarding the African commission engagements with disable communities i have no much idea about that but will fine time to visit their office and enquire about that.
if you have any more idea to share your comments are highly welcome
Thank you !
I think it is important to have an "equity hat" on when we are developing the policy. This term came from my planning class, when we put our "sustainability hat" on while evaluating comprehencive master plans.According to the American Planning Association of Planners, for example, each Sustainable plan has to have Interwoven Equity Principle, defined as fairness and equity in providing for the housing services, health, safety, and livelihood needs of all citizens and groups. Livable Built Environment Principle, for example, talks about the provision of complete streets that are designed and operated with all users in mind of all ages and abilities.It is important to have evaluation criteria when developing policy and include accessibility as one of the criterias. In my opinion the biggest challenge to creating disability policies in developing countries is political will and strong push from the society. The example of successful tactics is the mobilization of people with disabiities to fight for their rights, as it was during the Civil Rights Movement in the USA. Stakeholders can be part of advocacy campaign to make sure that coutries which signed the United Nations Convention on the Rights of Persons with Disabilities (CRPD) undesrstand that action does not stop there. Signed document without an action plan and responsible parties and timeframes is just a paper.