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Since 2014, the European Union has been formulating legislation concerning the rights of individuals with disabilities, with “autonomous living” as a crucial aspect. Officials realized the law was not being adhered to in nations such as Malta, prompting them to assist these young individuals in moving into independent housing. However, they were essentially the only people in their 20s who weren’t still residing with their families.
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Methods of Understanding
The Universe as Sound
Season 2, Episode 4
Global Disability Studies
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Voiceover: “The Convention on the Rights of Persons with Disabilities obliges both the E.U. and all its member states to ensure the right of individuals with disabilities to live independently within the community.”
CH: Since 2014, the European Union has been formulating legislation regarding the rights of disabled individuals. A cornerstone of that legislation: the principle of “autonomous living.”
Voiceover: “To guarantee that individuals with disabilities can live independently and be embraced by the community”
CH: A commendable notion: just because one has different abilities doesn’t imply they should be excluded from full participation in their community. Thus, every nation in the E.U. is expected to uphold these rights. If an individual is disabled and resides at home with their family or in a care facility, they have the entitlement to their own apartment — their own, autonomous living arrangement.
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CH: However, an intriguing development occurred. In Malta, a small nation situated just south of Sicily in the Mediterranean, E.U. officials observed that this law was not being enforced. The majority of young individuals with disabilities were still living with their parents. Consequently, the officials, in line with the law, relocated these young people to their own apartments. Notably, these were essentially the only young adults with their own apartments throughout Malta. Individuals in their 20s without disabilities still resided at home.
Stephen Meyers: And so you have this complete, this kind of ideology that you’re liberated, you’re no longer considered disabled once you can live on your own. But that feels out of place in the broader world.
CH: Stephen Meyers, a professor specializing in international studies as well as law, societies, and justice at the University of Washington.
SM: However, for most people around the globe, they reside in interconnected relationships, right? Multi-generational families exist, and people live within that family from birth to death. And that is the case for everyone, not merely for individuals with disabilities.
CH: It’s common in Malta, similar to many other nations, to stay with family until marriage. Thus, being on one’s own and living independently, regardless of ability, doesn’t make sense in that context.
SM: And if you consider what it traditionally meant to be like anyone else in Britain or the United States, which would involve owning your home or apartment, securing a job that you can compete for among others, and utilizing public transport like everyone else. These are the indicators, and can we ensure equal access to these types of opportunities? You elevate that notion and attempt to impose it in another environment, and it starts to unravel.
CH: For Stephen, this underscores a significant concern within the domain of disability studies: Western prejudice.
SM: So disability studies focus on promoting disability rights. You venture in and seek to instigate change in different regions. But if we fail to comprehend those regions, we won’t necessarily be facilitating constructive change.
CH: In Germany, France, the U.K. … leading an independent, liberated existence is perceived as an unequivocally positive concept. It’s not. It’s a cultural notion.
SM: The specific Western narrative regarding disability –– and it’s even narrower than that; it’s mainly a middle-class, white, majority culture, Anglo perspective –– has greatly shaped our understanding of disability and the concept we term disability liberation. Thus, through rights, we have the Western viewpoint that we are no longer hindered by society.
CH: Western bias is integral to the entire field of disability studies. It has been present from its inception. Confronting this bias necessitates recognizing the historical origins of the discipline.
SM: Disability studies originated primarily in the U.K. and the U.S. It boasts a specific history that you can trace back to its founders who were deeply concerned with issues like institutionalization and who often remained isolated from society. Individuals could spend their entire lives confined to a residence or a nursing facility.
CH: Disability studies contested this practice. It indicated that there are numerous issues with institutionalization, that it dehumanizes those enduring it and that it relegates participants to lives of total reliance. Hence, disability studies proposed an alternative: independence.
SM: Many were deeply engaged with this notion of independence, right? Being placed in an institution means you rely on that institution, and you can’t manage anything for yourself. Thus, much of the advocacy centered around creating opportunities for autonomous living. That became the framework: Being disabled equated to being stripped of your independence.
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CH: At that time, shifting attention from dependent, institutionalized living to autonomy was a revolutionary transformation in Western perspectives on disability. Nevertheless, as demonstrated by the Malta case, this core principle of disability studies posed challenges. It simply could not account for all cultural variations globally. Other disciplines within American academia, such as English, history, or philosophy, have been contending with their Western biases for decades. Yet, it has only been recently — in the 2020s — that disability studies has started to confront this issue.
SM: Disability studies is relatively late to the process of decolonization. Many fields have been diligently working to address, “What are the voices we’ve silenced? How have we portrayed non-Western contexts in stereotypical manners?” Anthropology has engaged in this work, history has tackled it, sociology has addressed it. However, disability studies has not made significant strides. We perceive ourselves as a critical discipline, as if we are already critiquing society. Thus, when critiquing society, we often overlook the need to critique ourselves and the ways in which we may be perpetuating some of the very issues we observe in others. As a discipline, it has not adequately explored how to incorporate voices from outside the West, and when our theories, methodologies, and research extend beyond, how can we ensure we do not misrepresent the experiences of individuals in those different contexts, right?
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SM: We aspire for as many voices to be included as possible. Consider the social sciences or the humanities or large disciplines; it’s about the human experience. If your field is narrowly defined, then you’re only able to capture one narrative, excluding all others, right? If you restrict that, then you are fundamentally failing.
CH: Here are five resources that will enhance your understanding of global disability studies.
“Disability, Globalization and Human Rights,” edited by Hisayo Katsui and Shuaib Chalklen
CH: This book is a valuable…
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An exploration into the varying approaches to disability across the globe, advocating for universal rights for individuals with disabilities.
“Decolonising Disability: A Global Perspective,” by Helen Meekosha.
CH: This essay presents the argument that the predominance of the global North in literature about disability has led to the sidelining of these experiences in the global South.
“International Perspectives on Disability Activism and Advocacy,” edited by Karen Soldatic and Kelley Johnson.
CH: This compilation investigates the varied expressions and implementations of disability activism and advocacy as experienced by individuals with disabilities and their supporters.
“Decolonising Eurocentric Disability Studies: The Importance of Colonial History in the Disability Debate in the Global South,” by Shaun Grech.
CH: This publication examines the relatively new incorporation of the term “colonize” in disability studies, asserting that ongoing usage of the term is essential for the field’s credibility.
“Utilizing Postcolonial Theory in Disability Engagement,” by Anita Ghai.
CH: This piece investigates the perception of disability in India and endeavors to integrate postcolonial insights into the realm of disability studies.
CREDITS
Ways of Knowing is produced by The World According to Sound. This installment focuses on the various interpretative and analytical techniques utilized in the humanities. It was created in cooperation with the University of Washington and its College of Arts & Sciences. All interviews with UW faculty took place on campus in Seattle. Background music provided by Ketsa, Human Gazpacho, Graffiti Mechanism, Serge Quadrado, Bio Unit, and our collaborators, Matmos.
The World According to Sound is crafted by Chris Hoff and Sam Harnett.
Stephen Meyers, an associate professor of law, societies, and justice at UW, mentions this as an instance of Western bias in disability studies. In this episode, Meyers discusses how this bias underpins the field of disability studies and highlights the necessity for the discipline to engage in self-critique and decolonization.
This marks the fourth episode of Season 2 of “Ways of Knowing,” a podcast that underscores how humanities studies can mirror daily life. Produced through a collaboration between The World According to Sound and the University of Washington, each episode presents a faculty member from the UW College of Arts & Sciences, discusses the inspiration behind their work, and offers resources for further learning about the subject.
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