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Disability as Diversity: A New Biopolitics

This article is part of the series:

We’re a medical anthropologist and a literary critic, and while our research interests seemingly have little overlap, we found ourselves engaged in a series of conversations about how the language of diversity shapes representations of disability and reproductive politics, and how this representation stems from the biopolitical management of life in the twenty-first century. In the short essay that follows, we’ll reflect on the ways that diversity discourses have become an organizing concept for some disability and deaf scholars and activists. We’ll show how in conversations about prenatal testing for disability, in political claims made about the value of deafness and disability in international arenas, and in popular media representations of deafness and disability, deafness and disability are often (re)presented as forms of diversity. In particular, we’re interested in the ways that a focus on disability or deafness as diversity works to erase difference, or to present difference as easily surmountable through a rhetoric that erases the actual difficult work of what Wendy Brown has called, “making a world with others.”[1]

Sociologists and critical race and feminist theorists, among others, have long critiqued diversity as a tool in neoliberal political economies that works to promote the status quo through “feel good” politics (see, for example, Ahmed 2012; Brown 1995; Faist 2009; Vertovec 2012); we’d like to extend this critique to look at how appeals to diversity are employed in disability discourses. We believe that this move from disability to diversity functions as a form of biopolitics because it works simultaneously to enable and obscure the means by which the state manages life in an increasingly neoliberal world. If biopolitics is a mechanism for categorizing, optimizing, and governing life on both an individual and population level, the category of diversity provides a powerful means for such governance. Through this process of population level identification, diversity comes to replace other (individual) categories of differentiation such as disability and deafness. Instead of seeing herself as an individual “deaf” person for example, a person will see herself as a member of a diverse global/human/national/[substitute your category here] body. In this framework individuals are paradoxically expected to contribute to such diversity by channeling any marker that signifies them as different towards the production of diversity. It’s through this performance of (and identification with and through) diversity that categories that mark difference are smoothed over. This occurs through a process of normalization, where normalization entails not removing difference but resignifying and representing it as diversity. As such, disability as diversity figures as the route to acceptance and harmony. While Vertovec (2012) has argued that diversity is a top-down framework that corporations and other entities utilize to effectively manage difference in ways to their own benefit, there has also been a shift to utilizing the framework of diversity from the ground up: the individuals and communities with which we are concerned are themselves utilizing diversity discourses and are actively working to frame themselves as “diverse”  and as contributing to diversity. They engage in such diversity claims instead of and in contrast to framing themselves as disabled.[2]

In a 2006 essay, Nikolas Rose and Paul Rabinow outline the genealogy of Michel Foucault’s concept of biopower which they argue is taking on new configurations with the emergence of a “bioethical complex” that exists in direct relation to the marketplace and capital (203). In this assemblage, patient groups and invested individuals operate according to biosocial principles in order to make demands on the state and the pharmaceutical industry to develop interventions, cures, and policies. For them, biosociality is based on shared racial, ethnic, gender, health, and disability status, among other axes of differentiation. In the examples that we analyze in what follows, individuals, communities, and scholars approach biosociality in terms of individuals’ ability to contribute to human or biological diversity, a category not (explicitly) considered by Rose and Rabinow. In our understanding, biosociality is based not only upon specific individually-held categories of differentiation but also through claims to a universalizing diversity. In other words, to be biosocial is both to claim difference and to try to subsume it in the name of diversity.

In a 2014 much-anticipated Deaf Studies book titled Deaf Gain: Raising the Stakes for Human Diversity, editors Bauman and Murray argue that deafness is not an evolutionary error but a natural part of human existence as evidenced by the fact that the 400 or so known deaf genes have not been ushered out through the evolutionary process. The editors of the collection write, “When we look through the lens of biocultural diversity rather than normalcy, we are better able to move beyond the single story of deficit to the many stories of complex cause and effect. In this reckoning, what could be considered a pathological condition—deafness—could instead be seen as a contributor to a more robust social and cultural ecology.” Their argument, and the argument of many of the book’s contributors, is that deafness should be seen as a form of diversity and not deviation. And thinking through diversity, according to Bauman and Murray, is a means of moving beyond both the social and cultural models of disability, which they argue have not been entirely successful in alleviating stigma and combatting discourses of normalcy (xxi).

The World Federation of the Deaf, an international advocacy and development organization affiliated with the International Disability Alliance has also focused on deafness-as-diversity. The theme of its most recent congress in summer 2015 was “Strengthening Human Diversity,” and one of the conference’s stated goals was to promote the idea that deaf people are part of global human diversity. The International Congress on Education for the Deaf, also held in summer 2015, was focused on the theme of “Educating Diverse Learners: Many ways, one goal.”[3] United States-based deaf communities have also taken up these themes. Consider a recent ten-minute mock documentary made by a deaf-owned communications and technology-focused non-profit called Communication Services for the Deaf. The film, Beyond Inclusion, stars Deaf model and current Dancing with the Stars contestant Nyle DiMarco. In it, a sinister plan is hatched to genetically engineer the human race and to remove all disabilities (including deafness) from the gene pool. However, “Human Diversity Now” activists learn about these plans and begin a campaign to “save” diversity and to promote human variation. The activists are particularly enamored with a potential president and leader of the cause who happens to be a sign language-using wheelchair-using woman who is also pushing for a new law called the Human Diversity Act of 2024 that will replace the Americans with Disabilities Act of 1990. The film ends with an argument for “Deconstruct[ing] Disability,” and the statement that “diversity makes us stronger.” In an interview, Communication Services for the Deaf’s CEO stresses the need to abandon or throw away the word disability in favor of the concept of diversity. A FAQ sheet on the website created for the film explains, “We believe that ‘disability’ is a label and a category that confuses, rather than clarifies. Confusion often breeds fear — and unnecessary fears result in higher unemployment and illiteracy. If we deconstruct it, we will discover what might otherwise be overlooked.”  This quotation is revealing in its focus on marketplace logic and its desire to render disability palatable and appealing. In fact, the film employs a number of actors of color, including a tie-wearing black man with his adorable son, to implicitly compare disability to race. These scenes suggest that disability, like race, is just another form of diversity, but in making this comparison the film flattens out difference and its historical, social, and economic markers. Still, the film has received enthusiastic support and has been circulating widely in deaf worlds. We are interested in parsing out the stakes of what it means to move “beyond disability” and toward “diversity” and why this message might be so popular.

For Rose and Rabinow (2006:197), a crucial component of biopolitics is that “individuals are brought to work on themselves, under certain forms of authority, in relation to truth discourses, by means of practices of the self, in the name of their own life or health.” In contrast, our examples above present arguments that suggest that individuals need to work on themselves not  (or not only) in relation to their own lives or health, but rather, in relation to more globalized discourses about human diversity. This seems to be moving away from disability categories and previous ways of understanding disability. Prominent theories of disablement in disability and deaf studies (i.e. Lane 1992) have closely analyzed the emergence of modern medicine and the classification systems that accompanied it. These systems fixed, diagnosed, and classified disabled people through diagnostic categories and placed them squarely within medical regimes of intelligibility. That is, after failing a hearing test, for example, a deaf child received the medical diagnosis of deafness. This medical diagnosis then provided the conditions of possibility for becoming a member of a deaf community or engaging in another biosocial configuration. However, we wonder what kinds of biosociality does the concept of human diversity enable? It seems to us that in focusing on diversity, such categories — which can be utilized to make social, political, and economic claims — are obscured. Individual differences are subsumed by population-level diversity claims.

Along related lines, feminist disability studies scholar Alison Piepmeier has argued that “disability is an embraceable form of human diversity.” Similarly, in a 2012 article in the Journal of Bioethical Inquiry, Rosemarie Garland Thomson, also a feminist disability studies scholar, makes the case that disability should be conserved, intentionally drawing on the language of conservation used by environmentalists who call for saving biodiversity. She believes that attempts to eliminate disability (primarily through prenatal testing and abortion) not only engage in new forms of eugenics but also impoverish the human experience. Garland Thomson doesn’t explicitly name our contemporary moment biopolitical, but her arguments gesture toward the recognition that biopolitics govern our behaviors, our understandings of our bodies, our desires for normativity, and our fears of embodied difference. Bodies in the twenty-first century are constantly managed by the state and marketplace, and that management often works on a molecular level that is obsessed with how our bodies function physiologically. Yet, by not directly addressing how this management works, how it’s deeply tied to a capitalist marketplace that upholds individual choice over all else, we believe that while she, and others making similar arguments, are positioning their claims in opposition to the normalizing forces of biopolitics, they are actually themselves biopolitical—and thus establishing new norms—in their insistence that human diversity is a goal towards which people should aspire. In other words, her argument ends up holding women responsible for reproducing in the name of diversity (setting up norms for women’s reproduction), and in doing so—in equating Tay Sachs and Down Syndrome as equally contributing to human biodiversity—she glosses over the economic, social, and political factors that exist in relation to different forms of disability.

In a 2015 post on Somatosphere, Faye Ginsburg and Rayna Rapp draw upon demographic research to provocatively argue that disability is the “new normal” and that increasing numbers of people will experience disability of some form in their lives, as a result of aging, warfare, and the prevalence of new diagnostic categories. They hope that with this “new normal” some degree of public and political recognition of disability will accompany the proliferation of new “disability publics.” In contrast, however, the representations of disability and deafness in terms of diversity which we analyze are another kind of  “new normal,” one presumably (and problematically) without disability (after all, we are told that we need to deconstruct disability and move beyond disability in these representations). This is ironic because many of the attempts to represent deafness and disability as diversity are concerned with trying to carve out a space for deaf and disabled people in the world in the face of genetic testing and new medical technologies. What does it mean to erase the very category that you are trying to preserve?

As our examples also show, by presenting disability using the language and performance of diversity, what’s lost from the conversation is how disability is rendered into a marginalized category through social, political, and economic practices. The concept of diversity is implicated in a biopolitics that intentionally subsumes the ways in which disability is socially, politically, and economically produced (in relation to impairment) and which attempts to erase difference. Instead, we’re arguing for a recognition of difference, and the ways in which a biopolitical system is both implicated in practices of disablement and creates the categories on which it rests. It’s only then, we believe, that–to return to Brown again–we can make a world with others.

 

Acknowledgements: We wish to thank Liz Lewis and Kyla Schuller for helpful feedback on drafts of this essay. Michele also wants to acknowledge Annelies Kusters, Maartje De Meulder, and Steve Emery for generative conversations on deafness and diversity.

 

Michele Friedner is an assistant professor of Health and Rehabilitation Sciences at Stony Brook University. Her book Valuing Deaf Worlds in Urban India was published by Rutgers University Press in 2015. Karen Weingarten is an assistant professor of English at Queens College, CUNY. Her book Abortion in the American Imagination was published by Rutgers University Press in 2014.

 

Works Cited

Ahmed, Sara. 2012. On Being Included: Racism and Diversity in Institutional Life. Durham, NC: Duke University Press.

Bauman, Dirksen, H-L. and Murray, Joseph. 2014. Deaf Gain: Raising the Stakes of Human Diversity. Minneapolis: University of Minnesota Press.

Brown, Wendy. 2006. “Learning to Love Again: An Interview with Wendy Brown.” Contretemps: An Online Journal of Philosophy. <http://sydney.edu.au/contretemps/6January2006/brown.pdf>

—. 1995. States of Injury: Power and Freedom in Late Modernity. Princeton: Princeton University Press.

Davis, Lennard. 2015. Diversity. In Rachel Adams, Benjamin Reiss, and David Serlin, eds. Keywords for Disability Studies. New York: New York University Press. Pgs. 61-64.

Faist, Thomas. 2009. “Diversity- a new mode of incorporation.” Ethnic and Racial Studies. 32(1):171-190.

Garland Thomson, Rosemarie. 2012. “The Case for Conserving Disability.” Bioethical Inquiry 9: 339–355.

Ginsburg, Faye and Rayna Rapp. 2015. Making Disability Count: Demography, Futurity, and the Making of Disability Publics. Somatosphere.net

Lane, Harlan.  1992.  The Mask of Benevolence: Disabling the Deaf Community. Knopf: New York.

Piepmeier, Allison. 2013. “The Inadequacy of ‘Choice’: Disability and What’s Wrong with Feminist Framings of Reproduction.” Feminist Studies 39 (1): 159- 187.

__. 2013. “My Suspicions about ‘Curing’ Down Syndrome.” Patheos. <http://www.patheos.com/blogs/thinplaces/2013/10/my-suspicions-about-curing-down-syndrome>

Rabinow, Paul and Rose, Nikolas. 2006. “Biopower Today.” BioSocieties. 1:195-217.

Vertovec, Steven. 2012. “‘Diversity’ and the Social Imaginary.” European Journal of Sociology. 53(3): 287-312.

Weingarten, Karen. 2016. “Testing Eugenics.” Avidly: A Los Angeles Review of Books Channel.  <http://avidly.lareviewofbooks.org/2016/03/10/testing-eugenics/>

 

Notes

[1] Lennard Davis (2015: 61) presents the following simple definition of diversity: “that despite differences, we are all the same—that is, we are humans with equal rights and privileges.” Going forward, we critique an overemphasis on sameness and the categories of difference that it erases.

[2] We note that there will always be disability categories that remain outside of diversity representations and claims, categories which are unassimilable and associated with “feeling bad,” although as we discuss below, scholars such as Rosemarie Garland Thomson have argued for including all disabilities in the name of enhancing biodiversity. We wonder, however, whether true and absolute inclusion is possible. For isn’t the concept of inclusion premised on the exclusion of some individuals or groups?

[3] After the conference, there was a significant debate about the failure to include signed language users in the conference through providing interpreters. One of the conference organizers made a point about the needs of deaf people being very diverse and impossible to accommodate, thus using diversity discourses as a means to not provide access. See language policy scholar Maartje De Meulder’s Pigs Can Fly blog.


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