“Ways of Knowing” Episode 4: Global Disability Studies

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Ways of Knowing

The World According to Sound

Season 2, Episode 4

Global Disability Studies

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Voiceover: “The Convention on the Rights of Persons with Disabilities commits both the E.U. and all of its member states to realizing the right of persons with disabilities to live independently in the community.”

CH: Since 2014, The European Union has been crafting policy on the rights of disabled people. A pillar of that policy: the idea of “independent living.”

Voiceover: “To ensure that the right of people with disabilities to live independently and be included in the community”

CH: A noble idea: just because you’re differently abled, doesn’t mean you shouldn’t be able to participate fully in your community. So every country in the E.U. is supposed to uphold these rights. If you’re disabled and living at home with your parents, or living in institutional housing, you have the right to your own apartment — your own, independent living situation.

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CH: But then an interesting thing happened. In Malta, a small country just south of Sicily in the Mediterranean Sea, E.U. officials noticed that this law wasn’t being followed. Most young people with disabilities were still living at home with their parents. So the officials, upholding the law, moved these young people into their own apartments. The thing is, these were pretty much the only young people who had their own apartments in all of Malta. People in their 20s who were not differently abled still lived at home.

Stephen Meyers: And so you have this like complete, this kind of ideology about you’re emancipated, you’re no longer disabled once you can live by yourself. But that’s weird in the rest of the world.

CH: Stephen Meyers, professor of international studies as well as law, societies and justice at the University of Washington.

SM: But for most people in the world, they live in interdependent relationships, right? You have multi-generational families, people live in that family from birth to death. And that’s for everyone, not just for persons with disabilities.

CH: It’s normal in Malta, just like a lot of other countries, to live with your family until you’re married. So being off on your own and living independently, disabled or not, doesn’t make sense there.

SM: And so you think about kind of the hallmarks of what it meant to be like everyone else in Britain or the United States, which would be like you own your own home or your own apartment, you have a job that you can compete for against others and you can do your job, you can use the bus like everybody else. These are the measures and can we have equal access to these kinds of things? You lift that up and try to plunk it down in another place and that starts coming apart.

CH: For Stephen, this highlights a major issue in the field of disability studies: Western bias.

SM: So disability studies is about advancing disability rights. You’re going in and trying to use it to change places. But if we don’t understand those places, then we aren’t necessarily creating positive change.

CH: In Germany, France, the U.K. … living an independent, emancipated life is seen as an objectively good thing. It’s not. It’s a cultural construct.

SM: The particular Western experience of disablement –– and it’s even narrower than that; it’s really the kind of middle class, white, majority culture, Anglo experience –– has really defined how we think about disablement and how we think about what we call disability emancipation. So through rights would be the Western understanding that we are no longer disabled by society.

CH: Western bias is foundational to the entire field of disability studies. It was there from the beginning. Addressing this bias requires an understanding of the historical roots of the discipline.

SM: Disability studies really began in the U.K. and in the United States. It has a particular history that I think you can look at the founders who were very concerned with things like institutionalization and didn’t go out in society. You could spend your entire life in a home or a nursing home.

CH: Disability studies challenged this practice. It said that there are lots of problems with institutionalization, that it degrades those who are in it and that it leads its participants to lives of total dependency. So disability studies offered something else: independence.

SM: People were very concerned with this idea of independence, right? So you’re put in an institution, you’re dependent upon the institution, you can’t do anything for yourself. And so, much of the advocacy was to create opportunities for independent living. That became the framework: To be disabled meant to be robbed of your independence.

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CH: At the time, shifting focus from dependent, institutionalized living to independence was a radical shift in Western thought around disability. But as we saw with the Malta example, this major tenet of disability studies was problematic. It just couldn’t account for all the cultural differences around the world. Other disciplines in American academia, like English, history, or philosophy, have been grappling with their Western biases for decades. But it’s taken pretty much until now –– in the 2020s –– for disability studies to come to terms with this.

SM: Disability studies is quite late to kind of decolonizing. Many disciplines have been working hard to say, “OK, what are the voices we’ve silenced? What are ways in which we’ve presented non-Western spaces in kind of stereotyped ways?” Anthropology has been doing the work, history has been doing the work, sociology has been doing the work. But disability studies has not been doing the work. We think of ourselves as a critical discipline, like we’re already critiquing society. So when you’re critiquing society, you oftentimes don’t think about critiquing yourself and the ways in which you’re actually doing some of the things that you see in others. I think as a discipline it’s done a very poor job thinking about how we include voices from outside of the West, and how when our theories, our methods, our research kind of gets exported, how do we make sure we aren’t mischaracterizing the experience of people in those other places, right?

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SM: We want as many people included as possible. You know, you think about the social sciences or the humanities or disciplines at-large, it’s about human experience. If you have a discipline that is narrowly defined then you’re only able to capture one experience, and you exclude all the others, right? If you limit that then you’re really failing.

CH: Here are five sources that will help you learn more about global disability studies.

“Disability, Globalization and Human Rights,” edited by Hisayo Katsui and Shuaib Chalklen

CH: This book is a good introduction to how disability is treated differently around the world, and makes a case for universal disability rights.

“Decolonising disability: thinking and acting globally,” by Helen Meekosha.

CH: A paper that argues how the dominance of the global North in writing about disability has resulted in the marginalisation of these experiences in the global South.

“Global Perspectives on Disability Activism and Advocacy,” edited by Karen Soldatic and Kelley Johnson

CH: This work explores the diverse ways in which disability activism and advocacy are experienced and practiced by people with disabilities and their allies.

“Decolonising Eurocentric disability studies: why colonialism matters in the disability and global South debate,” by Shaun Grech

CH: This book traces the relatively recent use of the term “colonize” in disability studies, and argues that the field must continue to use it if it wants to be taken seriously.

“Engaging with Disability with Postcolonial Theory,” by Anita Ghai.

CH: This article looks at how disability is viewed in India, and tries to assimilate postcolonial thought into the field of disability studies.

CREDITS

Ways of Knowing is a production of The World According to Sound. This season is about the different interpretative and analytical methods in the humanities. It was made in collaboration with the University of Washington and its College of Arts & Sciences. All the interviews with UW faculty were conducted on campus in Seattle. Music provided by Ketsa, Human Gazpacho, Graffiti Mechanism, Serge Quadrado, Bio Unit, and our friends, Matmos.

The World According to Sound is made by Chris Hoff and Sam Harnett.