Enabling Whom? Critical Disability Studies Now

Julie Avril Minich

More than twenty-five years since the passage of the Americans with Disabilities Act (ADA), the promise of “equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation” has not been fulfilled.1 In a 2011 report, the World Health Organization and the World Bank demonstrated that disabled people still “experience worse educational and labour market outcomes and are more likely to be poor than persons without disabilities.”2 In the United States, these disparities are particularly sharp: The Department of Labor reports a labor force participation rate for disabled people of 19.2%, compared with 68.1% for nondisabled people, as of December 2015.3 According to legal scholar Samuel Bagenstos, ongoing barriers to the full civic participation of people with disabilities in the United States can be found in “the structure of our health care system, under which people with disabilities can lose important Medicaid coverage if they take remunerative jobs; the continuing lack of accessible transportation and technology; and the failure of the government to fund personal attendant services.”4 Yet the public perception is that the ADA ushered in a new era of equality and rights so that no further intervention is needed. Indeed, Lennard Davis reveals that several of those who secured the law’s passage “have asserted that if the ADA came up for a vote in 2015, it would be defeated.”5

Despite this dismal legacy, the field of disability studies is thriving, as the following anecdotes attest. The Department of English at George Washington University began the 2014-2015 academic year announcing its areas of strength as Crip/Queer Studies, American Literature and Culture, British and Postcolonial Studies, and Medieval and Early Modern Studies; the positioning of Crip/Queer Studies alongside three canonized fields in a traditionally-defined department at a major research university signals institutional recognition of the field and equates the theoretical innovations of disability theory with those of queer theory. The following fall, the Women and Gender Studies Department at San Francisco State University announced a tenure-track position in Crip Theory, seeking applicants “whose work challenges parameters of the normative.”6 Acclaimed political theorist Nancy Hirschmann has provocatively claimed disability as “the new gender.”7 In fact, the inclusion of disability as a keyword for this very forum suggests that it is now seen as a necessary site of scholarly inquiry. The question, then, becomes: What are we to make of this flourishing of disability studies at a time when the lives and life chances of disabled people remain so precarious?8

Without abandoning my personal and intellectual investments in (and to) critical disability studies, I am troubled by a lingering suspicion that the field’s emergence as a major academic enterprise in the humanities is linked to the intensification of neoliberalism in higher education and health care. Neoliberalism, as defined by David Harvey, is “a theory of political economic practices that proposes that human well-being can best be advanced by liberating individual entrepreneurial freedoms and skills within an institutional framework characterized by strong private property rights, free markets, and free trade.”9 Neoliberal doctrine applied to higher education, according to Henry Giroux, results in “the corporatization and militarization of the university, the squelching of academic freedom, the rise of an ever increasing contingent of part-time faculty, the rise of a bloated managerial class, and the view that students are basically consumers and faculty providers of a saleable commodity such as a credential or a set of workplace skills.”10 In health care, neoliberalism codifies the idea that health status results from personal choices, a notion of the body as personal property whose care is an individual (not public) responsibility. For instance, despite the successes of the 2010 Patient Protection and Affordable Care Act (ACA) in making health care available to people without insurance, the law relies on discourses of individual choice and autonomy. It expands employers’ ability to offer “wellness incentives” that purportedly encourage healthy behaviors but, as Carrie Griffin Basas argues, discriminate against people with disabilities and chronic illnesses.11 The ACA thus encodes into law the perception that it is an individual’s responsibility to maintain him/her/themself in a state of maximum able-bodiedness. In other words, curricular recognition of disability occurs even as opportunities for people with nonnormative bodies and minds to access higher education and health care are curtailed.

As a result, not all disability scholars and activists celebrate what Alyson Patsavas calls the “strange new cultural capital” of disability studies; Patsavas writes: “I worry that cashing in on this capital can too easily happen without any thorough, sustained engagement with the history of the field, its deep roots in the disability rights movement, and the responsibility that disability studies scholars have to disabled people and the fight against systematic disability oppression.”12 Where Patsavas fears a disconnect between the study of marginalized social locations and the lives of those who occupy them, others take the critique further to suggest that the embrace of certain fields may occur at the expense of the communities those fields purport to benefit. Chandan Reddy, for instance, argues that the “institutionalization of the study of race can become dangerously aligned with […] the repressive functions of the state;”13 Nirmala Erevelles and Andrea Minear note that “individuals located perilously at the interstices of race, class, gender, and disability are constituted as non-citizens and (no) bodies by the very social institutions (legal, educational, and rehabilitational) that are designed to protect, nurture, and empower them.”14 These critics urge us to ask how the embrace of disability studies might foster complacency about ongoing injustices faced by disabled people. I raise this question not to advocate the abandonment of disability studies but to encourage robust discussion about disability scholarship in a moment when the field enjoys unprecedented prominence. Where do we want the field to go? How might we foment ethical relationships between disability scholarship, disability activism, and communities of disabled people? In other words, what do we want our work to do?

To begin, I propose an approach to disability studies that emphasizes its mode of analysis rather than its objects of study. As disability scholars have long noted, there is an immense body of scholarship about disabled people that few in the field recognize as disability studies: work that objectifies disability; places it under the medical gaze; pathologizes it; deploys it as a device of characterization; or uncritically treats it as a metaphor for decay, decline, or failure. At the same time, there is also an enormous body of scholarly and activist work that has until recently gone unrecognized by disability scholars as critical disability studies, despite advocating a radical politics of corporeal variation and neurodiversity: protests against racialized disparities in health, education, and policing; struggles for environmental justice and reproductive freedom; HIV/AIDS and fat activism; the writings of Audre Lorde on blindness and cancer and of Gloria Anzaldúa on early menstruation and diabetes.15 Recognizing disability studies as a methodology rather than a subject allows us to explain more precisely why we might not name the former as disability studies, despite the fact that it addresses disability; it also explains why the latter might constitute a disability studies archive, even if it is not directly identified with disability.16

The methodology of disability studies as I would define it, then, involves scrutinizing not bodily or mental impairments but the social norms that define particular attributes as impairments, as well as the social conditions that concentrate stigmatized attributes in particular populations. In the words of the San Francisco State University Crip Theory job ad, the work of disability studies is to engage “actively with cultural and material productions of difference.”17 In this framework, the principles informing disability studies might be applied to contexts that extend well beyond what is immediately recognized as disability. Topics for disability scholarship would include many that have been inconsistently or only recently recognized in the field: fatness, STDs, mood disorders, addictions, non-normative family structures, intimate partner violence, police brutality, neurological differences, pregnancy, cancer, aging, asthma, and diabetes, to name just a few. And I must emphasize that this scrutiny of normative ideologies should occur not for its own sake but with the goal of producing knowledge in support of justice for people with stigmatized bodies and minds. In other words, I argue for naming disability studies as a methodology rather than a subject in order to recommit the field to its origins in social justice work. Furthermore, when I locate the origins of the field in social justice work, I mean not only the widespread US disability rights movement but also other movements for the liberation of people with bodies and minds that are devalued or pathologized but who do not consistently identify (or are not consistently identified) as disabled.

My call for a more capacious recognition of the activist movements to which disability scholars should be accountable is critical because of the field’s persistent difficulty in addressing questions of race. This difficulty famously led the late Chris Bell to name the field “white disability studies.”18 More recently, Sami Schalk writes that despite frequent citations of Bell’s work, there remains a need for “disability studies to make stronger academic and political connections to other identity-based fields, particularly race/ethnic and sexuality/queer studies—connections that the field has not yet been able to make thus far in substantive and lasting ways.”19 The continued paucity of work on race and disability is particularly troubling because disability is so highly racialized—both in the sense that disability is disproportionately concentrated within communities of color, which receive unequal health care and experience elevated risk of experiencing workplace injuries, environmental contamination, and state violence, and in the sense that disability is often used rhetorically to reinforce white supremacy (just as it is also used to reinforce heteropatriarchy, transphobia, colonialism, and capitalist exploitation). As Erevelles and Minear argue: “The association of race with disability has been extremely detrimental to people of color in the US—not just in education, but also historically where associations of race with disability have been used to justify the brutality of slavery, colonialism, and neo-colonialism.”20 The history outlined by Erevelles and Minear has meant that efforts to resist the pathologization of non-normative bodies and minds in communities of color do not always take place under the name of disability scholarship/activism, even as they deploy what I am naming as a critical disability studies methodology.

Reframing disability studies as methodology also demands attention to the practice of teaching as well as research. In the final paragraphs of this essay, I turn to questions of pedagogy, a topic not often discussed in research publications like this one, to address how the neoliberalization of higher education impacts the accessibility of knowledge in disability studies classrooms. Giroux critiques universities’ increased reliance on adjunct faculty and expanded administrative apparatuses; these trends exacerbate a situation in which, as Amy Vidali notes, instructors rely on campus disability resource offices to dictate accommodations. She writes: “teachers often respond to students with disabilities with a fearful attitude of ‘getting it right,’ which typically means abdicating to professionals who often know less about teachers’ classrooms … than they do.”21 This problem is compounded by at least two factors. First, student disability services often rely on a medical model of disability (for instance, requiring documentation or diagnoses that can be costly, time-consuming, unsafe, or impossible for students to produce, particularly students with inconsistent health care access) that is at odds with the theoretical premises of critical disability studies.22 Second, instructors who occupy a position of institutional vulnerability as adjunct, temporary, or untenured faculty may find meeting students’ access needs overwhelming and, in some cases, unachievable; this is especially true when teachers have unmet access needs of their own. And yet the question remains: If we are not giving careful thought to how attendance policies, seating arrangements, assignments, lighting, and mode of instruction make the knowledge generated in our classes accessible or inaccessible, can we claim to be “doing disability studies,” no matter how anti-normative the theory used in our research might be?

Scholars like Vidali and Margaret Price advocate supplementing disability policy blurbs on syllabi with access statements that invite students to discuss their needs with instructors regardless of whether those needs are institutionally recognized; as Alison Kafer notes, what “is powerful about the framework of access—as opposed, for example, to ‘accommodation plans’—is that it requires neither diagnosis nor documentation.”23 As a teacher with an untenured but tenure-track university appointment, a teaching load of two courses per semester, and no unmet access needs of my own, I have found it immensely beneficial to my own teaching to invite students to read my syllabi carefully for access barriers and speak with me individually about how to minimize them. By placing the emphasis on barriers and not on students’ impairments, I am able to mitigate (somewhat) my university’s reliance on diagnosis as the criteria by which accommodations are distributed. Even more importantly, I have found that my students have much to teach me about access and pedagogy, and that my own effectiveness as a teacher improves when I make it possible for my students to have frank conversations with me about access.

At the same time, real access in education will not happen at the level of the individual course. Providing access statements on syllabi when university accommodations fall short means that the labor of access becomes individualized rather than institutionalized—and, furthermore, that it is often the most precarious faculty (untenured, disabled, adjunct, and/or temporary) who end up performing access labor that is better performed by institutions. How many departments that pride themselves on their disability studies curricula support faculty in going beyond standard accommodation models? How many universities offering disability studies courses discourage faculty from offering accommodations outside of the disability resource office? And, of course, as long as access is not institutionalized, faculty with tenure, lower teaching loads, leverage with the administrators who assign classrooms, and lighter service burdens will remain those most able to provide accessible classes.

The methodology of critical disability studies must be both a research and a teaching methodology. It must be a methodology that proceeds not from narrowly-defined notions of what “counts” as a disability but one that seeks to radically disrupt the multiple sociopolitical ideologies that assign more value to some bodies and minds than to others. Finally, it must be a methodology enacted in and through a commitment to accessibility.

[Editors’ note: Responses to this piece by Jina B Kim (“Toward a Crip-of-Color Critique: Thinking with Minich’s ‘Enabling Whom?'”) and Sami Schalk (“Critical Disability Studies as Methodology”) are published in Lateral 6.1 (Spring 2017), with a response by Minich.]

Acknowledgements

My gratitude to Alison Kafer, for feedback on an earlier draft of this essay; to Annyston Pennington, for research assistance; and to the students in my Fall 2015 class “Deviant Bodies: Disability, Race, Sexuality” for challenging the accessibility of my pedagogy.

Notes

  1. “The Americans with Disabilities Act of 1990 and Revised ADA Regulations Implementing Title II and Title III,” Americans With Disabilities Act, accessed December 4, 2015, http://www.ada.gov/2010_regs.htm.
  2. “World Report on Disability,” World Health Organization, 2011, accessed January 26, 2016, http://www.who.int/disabilities/world_report/2011/en/.
  3. United States Department of Labor, Office of Disability Employment Policy, accessed January 26, 2016, http://www.dol.gov/odep/.
  4. Samuel Bagenstos, “Disability Laws Are Not Enough to Combat Discrimination,” The New York Times, July 26, 2015, accessed January 26, 2016, http://www.nytimes.com/roomfordebate/2015/07/26/the-americans-with-disabilities-act-25-years-later/disability-laws-are-not-enough-to-combat-discrimination.
  5. Lennard J. Davis, Enabling Acts: The Hidden Story of How the Americans With Disabilities Act Gave the Largest US Minority Its Rights (Boston: Beacon Press, 2015), 8.
  6. “Crip Theory Job Ad,” San Francisco State University Women and Gender Studies Department, accessed December 3, 2015, https://sites.sfsu.edu/wgsdept/crip-theory-job-ad.
  7. Nancy J. Hirschmann, “Disability as a New Frontier for Feminist Intersectionality Research,” Politics & Gender 8, no. 3 (2012): 396.
  8. Throughout this paragraph, I have employed the terminology used by those I cite, making it appear that “disability studies” and “crip studies” are interchangeable, as they indeed sometimes are. However, some scholars do identify a radical potential in the word crip that is often missing from mainstream definitions of disability. As a nondisabled scholar, my current preference is the term critical disability studies. I also alternate between person-first language (“people with disabilities”) and identity-first language (“disabled people”) to emphasize that both have benefits and limitations. For theorizations of the term crip, see Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013); and Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York: NYU Press, 2006).
  9. David Harvey, A Brief History of Neoliberalism (Oxford: Oxford University Press, 2005), 2.
  10. Henry A. Giroux, Neoliberalism’s War on Higher Education (Chicago: Haymarket Books, 2014), 16.
  11. Carrie Griffin Basas, “What’s Bad About Wellness? What the Disability Rights Perspective Offers About the Limitations of Wellness,” Journal of Health Politics, Policy and Law 39, no. 5 (October 2014): 1035-1066.
  12. Alyson Patsavas, “Disability Studies Gains Cultural Capital? And Now What?,” The Feminist Wire, November 22, 2013, accessed December 4, 2015, http://www.thefeministwire.com/2013/11/disabilities-studies-gains-cultural-capital-and-now-what/
  13. Chandan Reddy, Freedom with Violence: Race, Sexuality, and the US State (Durham: Duke University Press, 2011), 30.
  14. Nirmala Erevelles and Andrea Minear, “Unspeakable Offenses: Untangling Race and Disability in Discourses of Intersectionality,” Journal of Literary & Cultural Disability Studies 4, no. 2 (2010): 129.
  15. Examples of what I would call critical disability work by Lorde and Anzaldúa include the following: Audre Lorde, Zami: A New Spelling of My Name: A Biomythography (Berkeley, CA: Crossing Press, 1982), The Cancer Journals (San Francisco: Aunt Lute Books, 1997 {1980}), and A Burst of Light: Essays (Ithaca: Firebrand Books, 1988); Gloria Anzaldúa, “La Prieta,” This Bridge Called My Back: Writings by Radical Women of Color, eds. Cherríe L. Moraga and Gloria E. Anzaldúa (Albany: State University of New York Press, 2015 {1981}), 198-209, Borderlands/La Frontera: The New Mestiza, 4th ed. (San Francisco, Aunt Lute Books, 2012 {1987}), and “now let us shift … the path of conocimiento … inner work, public acts,” This Bridge We Call Home: Radical Visions for Transformation, eds. Gloria E. Anzaldúa and AnaLouise Keating (New York: Routledge, 2012), 540-578.
  16. While not all of my examples here seem controversial, it should be noted that taking the approach I advocate may require disability scholars to confront work that directly interrogates guiding principles of the mainstream US disability rights movement. For instance, in her recent work on the maiming (not killing) of Palestinians in Gaza and the West Bank, Jasbir K. Puar argues: “Expressed {by Palestinian advocates} is the conviction that debilitation is a fate worse than death—death is preferable to disability—that contravenes the human rights model of disability. Why maiming is especially striking in this historical moment is because in the face of the rise of disability as a recognized vulnerable identity in need of state and global human rights protections, seeking to debilitate or to further debilitate the disabled, contrasts heavily with the propagation of disability as a socially maligned condition that must be empowered to and through a liberal politics of recognition.” Jasbir K. Puar, “Inhumanist Occupation: Palestine and the ‘Right to Maim,’” GLQ: A Journal of Lesbian and Gay Studies 21, nos. 2-3 (2015): 219.
  17. “Crip Theory Job Ad.”
  18. Chris Bell, “Introducing White Disability Studies: A Modest Proposal,” The Disability Studies Reader, 2nd ed., ed. Lennard J. Davis (New York: Routledge, 2006), 275-282.
  19. Sami Schalk, “Coming to Claim Crip: Disidentification With/in Disability Studies,” Disability Studies Quarterly 33, no. 2 (2013): no page, http://dsq-sds.org/article/view/3705.
  20. Erevelles and Minear, “Unspeakable Offenses,” 132.
  21. Amy Vidali, “Embodying/Disabling Plagiarism,” JAC 31, nos. 3-4 (2011): 261.
  22. As Ellen Samuels puts it, “medico-administrative definitions of disability {…}, developed and implemented in isolation from one another, are often violently contradictory in ways that severely impact disabled people’s access to employment, social participation, and even the basic needs of survival.” Ellen Samuels, “Fantasies of Identification,” Fantasies of Identification: Disability, Gender, Race (New York, NYU Press, 2014): 124-25.
  23. Alison Kafer, “Un/Safe Disclosures: Scenes of Disability and Trauma,” Journal of Literary & Cultural Disability Studies 10, no. 1 (2016): 1-20. See also: Margaret Price, Mad at School: Rhetorics of Mental Disability and Academic Life (Ann Arbor: University of Michigan Press, 2011).
Julie Avril Minich

Julie Avril Minich

Julie Avril Minich is Assistant Professor of English, Mexican American & Latina/o Studies, and Women’s and Gender Studies at the University of Texas at Austin, where she teaches courses in U.S. Latina/o literary and cultural studies, disability studies, and feminist/LGBT studies. Minich is author of the book Accessible Citizenships: Disability, Nation, and the Cultural Politics of Greater Mexico (Temple UP, 2014), winner of the 2013-2014 MLA Prize in United States Latina and Latino and Chicana and Chicano Literary and Cultural Studies. Additionally, she has articles published or forthcoming in journals such as GLQ, Modern Fiction Studies, MELUS, and the Journal of Literary and Cultural Disability Studies, as well as in several anthologies. She is currently working on a new book about U.S. Latina/o literature, compulsory able-bodiedness, and the racialization of health, which is tentatively titled Enforceable Care: Health, Justice, and Latina/o Expressive Culture.