Distraction Free Reading

Moving Towards Disability

December 3rd is the UN’s International Day for People with Disabilities. The theme of 2021 was “Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World”. Of course, 2021 has hardly been a post-COVID world; and the social and health effects of the pandemic continue to place people with disabilities at risk. According to the UN, days of recognition work to celebrate, educate, and ‘mobilize political will’ (https://www.un.org/en/observances). These days of recognition are often for complex problems and, as CASTAC’s 2020 post says, the next question is What Happens The Day After? (Borodina 2020). This year I would like to present a brief case for how and why we, in STS and anthropology, can take up Disability as a lived reality and analytic for our work. I discuss disability as a category and its implications and then present two possible frameworks for its incorporation.

Disability is Already a Capacious Category

Attempting to define disability, one immediately finds an unwieldy morass; nearly every aspect of human life can be disabled- mental, physical, learning, sensory. Disability can cover stable and unstable experiences. One can be born into such a difference; or one can acquire disability- as a permanent condition such as with a traumatic brain injury, or move through disability temporarily with other injuries; chronic illnesses and conditions may lead to times of “normalcy” and debilitating flare ups. Some may experience disability, but label and negotiate it differently, such as the elderly. Disability is also not geographically stable: there are many ethnographies that point to differences which might be labeled as disability, yet within the community of study the “disability” is socially and systemically adjusted for. An example would be Gwaltney’s ethnography on blindness and accommodation in Mexico (Gwaltney, 1967). There are conditions such as the absence of an arm which looks like one thing to an outsider but the root cause of being born with a limb difference or of acquiring an amputation entails different lived realities and different relationships to Disability as an identity. Disability encompasses a vast number of lived experiences that are ever-present in Western life.

I belabor this point because, as Borodina makes explicit, International Disability Day “gives the impression that disability-related issues concern only people with disabilities, that they are biopolitically anchored in one clearly delineated and separate population” (2020). It is important to understand disability as unruly and capacious, as already present in everyday life, and not as a clearly delineated population. The people with these conditions already make up our intimate and extended communities, are present in our universities, as students and professors, are present in our communities of study. Disability is already interrelated in our lives and yet it often goes unacknowledged in professional, academic, and community work.

Two Possibilities

Before I engage with disability as a metaphor, it is important to understand that disability affects and marginalizes the lives of real people. Some disability scholars and activists reject the analytical potential of disability, saying that it obscures the reality of living with a disability (Kurzman, 2001). This is often because metaphorical uses of disability in everyday speech present disability as a negative (Wehmeyer 2013). Examples are phrases like “to fall on deaf ears”; and many insults began as labels for those with disabilities- idiot, moron, dumb (Simplican 2015).  The inherent linking of disability with diminishment, and the consistent use of it to describe negative situations reveals how the non-disabled imagine the lives of those with disabilities. Yet this is not how disabled people understand themselves, nor is it how caretakers and those who live adjacent to disability understand it (McKearney 2018). The basic foundation of Disability studies and activism is that ableist systems are inherently disabling, not disability.

Keeping these realities in mind, the following is my first example of how to use disability in analysis. Here, I turn to a quote from sound and technology scholar Mack Hagood’s recent interview on the New Books Network.

“…we move toward what feels enlivening and enabling and we move away from what feels disabling and diminishing. That’s how we use media.” (Hagood 2020).

My initial understanding of this was: this is how individuals engage with media. But if we (those working in anthropology and STS disciplines) consider disability as a society-wide structural practice that is meant to diminish and exclude (Shakespeare 2010); exclusion from buildings, transportation, websites, social media, and academia to name a few. Then I would argue that all people, disabled and non-disabled, seek to move towards not only media, but systems, events, people, and experiences that enable and enliven them. If disability is going to continue to be a shorthand for negative descriptions, then the negative it points to should be the disabling done by ableist systems, not individual attributes or conditions. A rereading of this quote would then refer to: a media practice that would diminish and exclude users. The onus would need to be on media rather than users.

In this vein, the broader literature of disability often links neoliberal capitalism and disability. One such reason is that neoliberal capitalism is based in a eugenics informed logic that is interested in expanding and specifying normal and not-normal; creating categories that can be made into identities and marketed to (McRuer 2012; Fahn 2020; Ginsburg and Rapp 2013). All of this work points to the ways that disability is constructed and excluded at the foundation, and subsequent practice of, systems. Disability becomes a valuable method for wider disciplinary work because it makes apparent the systemic practices that limit and debilitate the lives of those we work with and study (Schalk 2017); engaging with disability means questioning the exclusionary and eugenics-based logic that seems invisible but is widely present in our fields and disciplines.

There is work that does this, scholars like Puar (2017), who point to systemic State practices of disablement and debilitation used to punish and control minorities; or Simplican (2015), whose work shows how eugenics’ logic of identifying and separating out those with mental disabilities is fundamental and inseparable from democracy; Shuelka’s work which looks at how educational systems define and thus construct disability in students (Schuelka 2018; 2013). Sharon Snyder and David Mitchell in Narrative Prosthesis (Mitchell 2000) claim that representations of disability in current and historical literature reveal much about how the society of the time and place, conceives of and seeks to solve problems. Similarly, Johnathan Metzl’s The Protest Psychosis, shows the instability of schizophrenia as a diagnosis throughout the 20th century; The primary symptoms and definition of the diagnosis changed as it went from primarily controlling white women and shifted to become a tool to control political black men in the 60’s. Schizophrenia was changed to disable and problematize and thus control different populations, as “new” social issues rose to the forefront (Metzl 2011). If it were a method, Disability would demand an engagement with power, especially at moments of erasure and categorization.

The other approach is to see Disability as a positive and valuable perspective. The goal of this practice is to switch the metaphor: rather than disability signaling diminishment, it should signal enlivenment. This follows the paths of feminist and queer perspectives, which went from erased or invisible to become generative interdisciplinary perspectives and Disability scholars ask why can’t disability offer the same (McRuer 2010)? In the way that Donna Harraway is broadly feminist and Eve Sedgwick’s queer critiques have a wider purview, Disability scholars offer valuable work that looks at the intertwining of disability: and environmentalism (Clare 2015, 2013), food and animal treatment (Taylor 2016). While race and disability have a tense history (Bell 2006), Sami Schalk’s work (Schalk 2018) looks at how Black women’s speculative fiction imagines new futures for race, gender, and disability; perspectives that inform how we perceive, value, and analyze these categories in the present. Disability offers perspectives that cannot be co-opted or legitimized through mainstream endeavors. Both the lived realities and the critical lens of disability refuse “easy domestication” and demand the valuing of alternative ways of being in the world (McRuer 2012).

Taking Disability as a positive means seriously engaging with the future of disability, and the valuing of alternative lived experiences. To this end, a central tenet of disability activism is that disabilities do not need to be solved or cured (Clare 2017). Certain conditions may require the expertise of medical professionals for care, but cure and “fixing” sit alongside a complex history of control through charity and rehabilitation (Stiker 2000) and times when medical help does more harm than good (Peace 2012). Disability is intimately wrapped up in time, history, and future-making. It means questioning why millions of dollars are raised in the hopes of curing or eliminating conditions, but so little of the money goes to sustaining the people who live with those conditions and ensuring access to full and safe lives (Clare 2017). Disability offers new ways to comprehend and critique the world around us, new ways to value and participate in the present, and new ways to imagine the future.

A placard from a climate change protest with "Disabled people for future!" written on it with a small size disability icon on bottom left of the placard and a small size world on fire icon on bottom right of it

Placard from a climate change protest. Placard says “Disabled people for future!”. A statement that people with disabilities want a future that includes them too. Photo by Markus Spiske


References

Borodina, Svetlana. 2020. “International Day of Persons with Disabilities: What Happens the Day After?” Platypus the CASTAC Blog (blog). December 3, 2020.

Clare, Eli. 2015. Exile and Pride. Duke University Press.

———. 2017. Brilliant Imperfection. Duke University Press.

Fahn, Chia Wei. 2020. “Marketing the Prosthesis: Supercrip and Superhuman Narratives in Contemporary Cultural Representations.” Philosophies 5 (3): 11.

Ginsburg, Faye, and Rayna Rapp. 2013. “Disability Worlds.” Annual Review of Anthropology 42 (1): 53–68.

Gwaltney, John L. 1967. The Thrice Shy: Cultural Accommodation to Blindness and Other Disasters in a Mexican Community. Columbia University Press.

Hagood, Mack. 2020 Interview by Eamonn Bell. https://newbooksnetwork.com/mack-hagood-hush-media-and-sonic-self-control-duke-up-2019.

Kurzman, Steven L. 2001. “Presence and Prosthesis: A Response to Nelson and Wright.” Cultural Anthropology 16 (3): 374–87.

McRuer, Robert. 2010. “Disability Nationalism in Crip Times.” Journal of Literary & Cultural Disability Studies 4 (2): 163–78.

———. 2012. “Afterword. Counter-Eugenic Logic.” Journal of Bioethical Inquiry 9 (3): 357–58.

Metzl, Johnathan. 2011. Protest Psychosis: How Schizophrenia Became a Black Disease. Beacon Press.

Mitchell, David And Sharon Snyder. 2015. The Biopolitics of Disability. University of Michigan Press.

Peace, William J. 2012. “Comfort Care as Denial of Personhood.” The Hastings Center Report 42 (4): 14–17.

Schalk, Sami. 2017. “Critical Disability Studies as Methodology.” Lateral: Journal of the Cultural Studies Assoc. 6.1 (Spring).

———. 2018. Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction. Duke University Press.

Schuelka, M. 2018. “The Cultural Production of the ‘disabled’ Person: Constructing Difference in Bhutanese Schools.” Anthropology & Education Quarterly. https://anthrosource.onlinelibrary.wiley.com/doi/abs/10.1111/aeq.12244.

Schuelka, M. J. 2013. “A Faith in Humanness: Disability, Religion and Development.” Disability & Society. https://www.tandfonline.com/doi/abs/10.1080/09687599.2012.717880.

Shakespeare, Tom. 2010. “The Social Model of Disability.” In The Disability Studies Reader, edited by Lennerd Davis. Routledge.

Simplican, Stacy Clifford. 2015. Intellectual Disability and the Question of Citizenship. University of Minnesota Press.

Stiker, Henri-Jacques. 2000 (1980). A History of Disability. University of Michigan Press.

Taylor, Sunaura. 2016. Beasts of Burden: Animal and Disability Liberation. The New Press.

“UN Disability Inclusion Strategy Report 2019: Easy Read.” 2019.

Wehmeyer, Michael L., ed. 2013. The Oxford Handbook of Positive Psychology and Disability. Oxford University Press.

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