Perhaps the best opening line in disability studies comes from Georgina Kleege: "Writing this book made me blind." Following this honorable tradition, I begin my explication of disability studies through my own experience with a similar starting point: "Feminism made me disabled." Honoring as well the tradition of making theory through narrative, I also follow Helen Keller, who like Kleege situates her knowledge in the local. From these exemplary works of feminist disability studies, I develop an explication of how I grew disability studies and how it grew me. Throughout, I consider the categories of disabled and nondisabled and the ways in which they have developed in disability studies literature broadly. I conclude by asserting the importance of both access and identity and community for disabled people.
"Feminism made me disabled."
Perhaps the best opening line in disability studies comes from Georgina Kleege. "Writing this book made me blind," Kleege begins in Sight Unseen, her elegant 1999 explication of blindness and sight as cultural metaphors (Kleege 1999, 1). Following this honorable tradition, I'll begin my explication of disability studies through my own experience with a similar starting point: "Feminism made me disabled." Honoring as well the tradition of making theory through narrative, I'll also follow Georgina Kleege's thorn-bound predecessor, Helen Keller, who like Kleege situates her knowledge in the local. Keller's 1908 collection of personal essays The World I Live In and Kleege's Sight Unseen are exemplary works of feminist disability studies, which I'll follow in my explication of how I grew disability studies and how it grew me.
Keller begins with her particular body in the act of knowing her particular world: "I have just touched my dog" (1908, 3). This first line of her book's first essay, "The Seeing Hand," grounds Keller's knowledge of self and world in her embodied sense of touch, which for the deaf-blind Keller is what philosophers in the tradition of Merleau Ponty might call a phenomenological epistemology. I will call it disabled knowing. Kleege places her knowing body in the classroom on the first day of a new semester: "I tell the class, 'I am legally blind.' There is a pause, a collective intake of breath," she writes as she opens this critical essay that de-familiarizes the normative social practice of eye contact (9). By offering here the narrative of how feminism made me disabled, I'll not only follow the feminist disability studies practice of putting story in the service of theory, but will also affirm the central political slogan of what we call the second wave feminism of the 1960s through 80s: "The personal is political." Although this slogan and its ilk have been appropriately critiqued in subsequent critical theory, I want to reassert it here as a way to situate my own position as a critic, as a way to turn my disability studies practice toward a new materialism, and as a way to implement narrative ethics. 1 This Bildungsroman of my becoming disabled and a disability studies scholar is what Eve Sedgwick (1997) calls "a reparative reading," an earnest and optimistic critical position that is neither lament nor jeremiad. 2
"I was born this way."
For me, the originating narrative of how feminism made me disabled is what we might call the primal scene of disabled social life. It is the story "I was born this way," which is the answer I developed to present myself before the relentless question "What's wrong with you?"—asked sometimes with eyes and sometimes words. 3 Of course, I had no idea—no consciousness, feminist, disabled, political or otherwise—of what this meant when I began responding to this question at what must've been a very young age. This hailing by disability identity comes to us as the demand to account for yourself, embedded in the question, "What happened to you?" As philosopher Judith Butler notes in Giving an Account of One's Self (2005), recognition can only take place through a set of social norms. As I have suggested in Staring: How We Look (2009), because the ways of being in the world we think of as disabilities are virulently abnormalized, disabled peoples' challenge—and with it the challenge of disability studies—is to establish new modes of recognition within a context of profoundly discrediting received social norms. The hailing into identity of the more ordinary may range from something like "What's your name?" to "Where are you from?" or, perhaps in the new conceptual world of racial hybridity, "What are you?" But for the ways of being in the world that we consider disabilities, the majority world apparently understands us as people to whom something has happened, for whom something has gone terribly wrong. Indeed, this is the distinctive aspect of disability identity. This inquisitional targeting of people with perceptible disabilities is neither disability prejudice nor discrimination itself. It is what people in the world craft from this interrogational moment that makes disability discrimination and exclusion. This is my specific narrative response to "What's wrong with you?"—the primal interrogation that makes disability identity. This "I was born this way" account, so familiar and tedious for me, has transformed into "I have a disability," which establishes a claim to inclusion and access to resources.
This "What's wrong with you/I was born this way" exchange clarifies the fundamental bifurcation of disability identity. People with disabilities must simultaneously navigate two interrelated territories. One is body management, and the other is social management. Although not distinct from social management, body management focuses more on how a disabled person both experiences her own embodiment and uses her body in the world. Our ways of being in the world direct how we navigate and understand that world. Disability profoundly shapes the way we accomplish our tasks of daily living and relating to others. As we manage our bodies in environments not built for them, we perpetually counter social challenges. For a characteristic to transform from simply the way we are into a disability, it must manifest in some way in the network of social relations. All of the human variations understood as disabilities at a particular historical moment and place are embodied. We usefully sort these disabilities into categories such as cognitive, sensory, physical, psychiatric, intellectual, developmental, and environmental, as well as chronic illness, acute disease, and appearance impairments. All have different degrees of manifestation, or what we sometimes think of as disabilities, which affect their social meanings as well as the body management strategies of the people identified as disabled on the basis of these characteristics.
In other words, disability has effects in the world as it shows itself. For example, I wear my disability on my sleeve most of the time because the physical form of my arms and hands is quite unusual and noticeable. My subjective experience of my body is familiar because I have routinized most daily living tasks to fit my body and because I have inhabited this relatively stable body for a long time. At this moment in the workplace, however, my disability has become very salient, not in appearance but in function, because the mounting demand for digital manipulation of computers in our jobs has made me increasingly disabled. The account I must now give of myself in this context is not "I was born this way" but rather I require disability accommodations to do my job. Because the concept of equal access is legally mandated under civil rights legislation, becoming disabled this way includes rather than excludes me from the workplace, which is my access route to economic resources.
For disability to emerge from embodiment, then, it must be recognized. Even when a disability is seldom discernible or legible—such as psychiatric conditions or many illnesses—the potential for its emergence, especially spontaneous occurrences or revelations, makes disability as well. Sometimes disability claims us through our appearance and sometimes it claims us through our functioning. Someone with a chronic illness may not meet the temporal demands the workplace expects. Someone with a psychiatric disability may not meet the sociability expectations of interpersonal networks. Someone who has seizures, autistic spectrum disability, chronic illness, psychiatric diagnosis, or is hard of hearing may not be recognizably disabled always or even often, but they become disabled when that characteristic emerges in some perceptible way in the social environment. When a person with what we might call audiological limitations speaks with a Deaf accent or doesn't respond in the expected way in a verbal interchange, they become disabled. When someone living under a psychiatric diagnosis or with a chronic illness behaves or functions in unexpected ways, often because they have encountered barriers or require accommodations, disability occurs. The most definitive way we become disabled in this historical time and place, as I have suggested, is to request accommodations either formally through the legal codes of disability rights or more informally to request access not as special favors or exceptions but rather under the logic of the right of disabled people to be extended equal opportunities as full citizens. In other words, when our embodied ways of being in the world come to be understood as disabilities or when we understand our way as disabled, we then enter the category.
While the world demands that all people undertake dual body and social management, dealing with disability identity has distinctive aspects that center around the understanding of disability as having something wrong with you. Sociology offers the terms felt and ascribed identities to describe this duality. Critical race studies has offered W.E.B. Dubois' (1903, 1999) concept of "double consciousness," which captures elegantly the paradoxical, simultaneous experience of being hailed by nondominant identities. Simply put, one's felt identity is how one experiences oneself as an embodied, perceiving, conscious subject at the center of one's own world. One's ascribed identity is the subject position other people project upon one or understand one to occupy. Because the identity category "disabled" has traditionally been a subject position that Erving Goffman (1963) calls "deeply discrediting," it is an identity most people are reluctant to embrace. Only the framework of civil and human rights along with the emergent disability nationalism or disability pride movements that are modeled after US black nationalism, cultural feminism, or queer activism have offered disabled people a narrative of self worth, dignity, and pride to counter the virulent received cultural narrative that there is something very wrong with us and that this wrongness is our very bodies. For disability identity, this accusation of wrongness is, in late modernity, defined primarily through the epistemic regime of medical abnormality, as critical disability studies has so vigorously argued.
An accusation of moral wrongness clings nonetheless to what are still imagined as volitional conditions such as addiction, many illnesses, and even ideas of familial or ancestral curses. The imperative to establish causality—and with it narratives of continuity—that is so characteristic of late modernity shapes narratives of wrongness and rightness within groups, particularly within families. As Andrew Solomon shows in his book Far from the Tree (2012), most disabled people are understood as foreigners within their own families, as an interruption in the continuity of sameness upon which familial solidarity is founded. The narrative of likeness crucial to group unity fractures critically with the arrival of disability to a family or circle. This does not mean that disabled people are unloved or unaccepted within families or communities, but it suggests another way that congenital or early-onset disability can be understood as some version of wrongness, often a benevolent wrongness, because it violates the anticipated continuity of sameness as nondisabled status within families. In other words, the seeming wrongness of congenital disability lies in the narrative that the family has got the wrong child, a changeling for the nondisabled child who was expected. In such a case, the characteristic identified as disability becomes super salient, overwhelming the child's other characteristics and totalizing the family as nondisabled and the child as disabled. This distinction between the disabled newborn and the nondisabled family attenuates, as Solomon suggests and as my own experience supports; even though a child with a congenital disability may refocus the family around the child's disability management, the wholeness of the child can fully emerge in family systems that absorb and embrace what once seemed foreign in the child.
"One is not born disabled, but rather becomes disabled."
Not that this transition from "I was born this way" to "I have a disability" was simply accomplished. For me the transition began with my discovery of feminist theory, which predated for me a politicized disability identity. With no context for a politicized understanding of disability, I resisted engulfment by medical deviance and condescending benevolence. Those were the only available disability places I saw around me. I had no language for any of this; my resistance came from a sense of survival not political awareness. That left me with no identity navigation tools except denial. It was hard work to pretend my disability did not exist and had no effect on my life or on others. Since my entry into disability culture, I have heard this same story many times from colleagues with disabilities as salient as mine. Brenda Brueggemann developed elaborate passing strategies to avoid being identified as deaf. Stephen Kuusisto perilously rode bikes as a blind child. Many of us shunned the wheelchairs or the walking aids we needed but that would mark us as disabled. As a child in a pre-disability rights time, I went to public schools, for example, not because the schools could or would accommodate my disability or were in any way accessible but because I had developed a keen sense of how to navigate what I now understand as barriers and unwelcoming environments. Because I could read and walk I got in the door, but I did not flourish educationally and felt ashamed of what I understood as my inherent deficiencies. Nevertheless, I would have done anything to avoid the virulent stigma of the special school. I was quite educationally disadvantaged, however, by my adaptive practice of avoiding barriers because I had no way of imagining the concept of disability access, accommodation, or rights. As Andrew Solomon has pointed out, most of us were brought up in nondisabled families who mostly loved and accepted us but who nonetheless had no way of offering other versions of self-worth besides nondisabled pride and nondisabled dignity. In my own family, not only my disability itself but the very concept of disability went unmentioned, in part because it had become an unremarkable part of how we lived and worked as a family, but also because the matters of the body that feminism and black nationalism eventually liberated us into talking about were still considered faintly inappropriate topics in polite conversation. When we have no tenable way to be disabled with dignity and a sense of our own value, we often simply approximate nondisabled being as well as we can. This strategy for survival is less repudiation than a dearth of models. We cannot make up positive disability identity out of nothing if we are unaware of usable models or narratives to remake ourselves.
Perhaps the most important line from what is often called second wave feminism comes from Simone de Beauvoir's proclamation in her 1949 tome The Second Sex that "One is not born, but rather becomes, a woman" (1973, 301). With this line, feminism gave me—and anyone else studying feminism and the emergent history of women in the 1980s—the entire theory of social constructivism in a single elegant sentence. As I did with everything I learned from the feminism I was studying in graduate school in the late 1980s, I repurposed it into my own version of disability studies. The idea that culture, discourse, and social relations—rather than the rightness or wrongness of our bodies—make us who we are and who we are understood to be was an intellectual lightning bolt for me. The task of maintaining my personal dignity and legitimacy that I had been engaged in my whole life, and still am, appeared to me in a completely different way as I reframed who I was in the light of de Beauvoir's 800 page explication of how culture made women into women. Suddenly, what had been wrong with me all my life became what was wrong with the social order. I became disabled, then, similarly to the way I had become a woman. Although woman was an identity I had always claimed and which had claimed me, disabled was an identity, as I've suggested, from which I fled. The emergence of 1970s feminism and black nationalism in public conversation and consciousness gave me the new idea of reframing stigmatized identity as a matter of social justice.
What The Second Sex showed me I could do—indeed, authorized me to do—was to both acknowledge and cultivate an ambivalent relationship with my various identities. It made me understand that I inhabited a marked position within the gender and ability systems, but also that I was located within social systems, such as race and sexuality, where I occupied an unmarked position—although I didn't know exactly how to talk about it in this way at the time. Everyone else was positioned within social systems as well, and identity systems did their work through all cultural institutions. I realized that I could think about disability the way Simone de Beauvoir had thought about gender at midcentury. I began thinking about what a feminist disability studies might be. This was not just liberating but enlivening.
The women's movement was not new to me in the 1980s. I had thought of myself as a feminist whose consciousness had been transformed along with many women in the early 1970s. Feminist theory and women's studies, however, was a profound critical probing of the gender system through the scholarly methods of the humanities, social sciences, and even sciences. It brought political reform, social justice initiatives, and individual liberation into the structure of the academic enterprise's mission of knowledge-building and dissemination. It also brought a sense of shared mission and community in the intellectual project of making new knowledge together. Because I had been socialized in a women-centered family and had developed amid various communities of women, I had a sense of how a shared identity community can support individual identity development, even amid the differences, disadvantages, and dysfunctions that attend to identity-based communities. There were plenty of ineffective womanly ways, even deeply troubled gendered patterns in my family, yet a sense of shared and sustaining struggle prevailed.
I was alone with disability, however. My mother's response to my congenital disability, as I suggested, was to normalize it by ignoring it as fully as possible. When I talk about growing up disabled with other disabled colleagues, this astonishing family strategy for raising disabled children is their family story as well. In my family, we never talked about my disability as such even when we were navigating medical treatment or barriers. The coping strategy they used and taught me was that I was expected to do and to be what the average nondisabled person was. Positive disability identity or community did not exist in my world. Most important was that I could enter school, although I recognize in retrospect that I was an exception. Education as an institution could only serve me as a nondisabled person to the extent that I could emulate nondisabled ways of being. I navigated the gender system in exactly the same way. When masculine expectations were barriers to my feminized self, I navigated around them. These were sensible adaptive strategies widely used in an era before the concept of equal rights, equal access, and disability pride provided a rationale and momentum to change the environment, both ideological and material, rather than excluding individuals who didn't fit those environments.
So feminism made me disabled by showing me how positive identity politics could be mobilized in the service of the knowledge-building and dissemination project that is the academic mission. Most important for me as a humanities scholar, I learned from feminist studies the power of representation to shape the world. I recognized that both framing and enacting disability in the context of the positive identity politics which emerged from the civil and human rights and social justice understanding of disability was the route to dignity, equal treatment, and access for people with disabilities. Only through shifting my understanding of my disability as an identity category accorded recognition, rights, and equal access to opportunity under the principles of egalitarian government at its best could I and other people with a wide spectrum of disabilities act and be in the world outside of a deficit model of existence. This re-narration of disability is crucial both for subjective identity formation and for the reception of disability by other individuals and institutional structures. So the principle of equal rights for all citizens undergirds a legitimate pursuit of access and the accommodations necessary for inclusion. It also offers justification for challenging exclusion as a form of discrimination against which legal action can be taken. Without this framework, the logic of deficit that was the only pre-civil rights understanding of disability has no rebuttal.
Despite my developing framework of feminist disability studies, I was still left stranded without a disability identity community. Enlivened as I was intellectually by applying feminist theory and women's studies practices and theories to the subject of disability, it appeared to me to be a lone project in the English Department at Brandeis in the late 1980s, even though I received much support from mentors and colleagues there. The idea that disability might be a social construction and that it was a concept in a representational theme everywhere in literature and culture were completely new ideas to everyone I came in contact with, both at Brandeis and in the larger profession. Nowhere that I could find in the critical literature of English as an academic field was there any awareness of disability as a critical category or representational system that structures the social world. I was using the models of feminist literary criticism to write and think about representations of disabled women in American literature. About midway through my graduate study, my advisor asked me if I knew a Brandeis sociology professor that he thought did work in disability. That sociologist was Irv Zola, and I had never heard of him even though I knew and admired several of his feminist colleagues in the sociology department. I immediately found Irv, the avuncular and generous founder of disability studies, leader of SDS, and editor of Disability Studies Quarterly—which was a mimeographed newsletter at the time. Irv welcomed me into disability studies and presented me with an entire wall of bookshelves filled with disability studies books. I had no idea there was a field of study and a literature that framed disability as a politicized rights-based identity and a social construction. Irv introduced me to his own work and to the canonical work of early disability studies by scholars in the social sciences such as Adrienne Asch, Nora Groce, Robert Murphy, Richard Scotch, and Harlan Hahn. Irv insisted that I read Irving Goffman's Stigma: Notes on the Management of Spoiled Identity and Robert Bogdan's Freak Show: Presenting Human Oddities for Amusement and Profit (1988). Both titles terrified me and I initially refused, but Irv persisted. These titles expressed my worst disability nightmares; they confirmed the cultural message flung at me my entire life that disability had spoiled me and made me a freak. They seemed to be book-length versions of that primal disability scene: "What's Wrong with You?" that I had been navigating around as best I could my whole life.
Irv was what he called with sassy in-group irony "a Polio," and he told me about passing his whole life for nondisabled until politicized identity politics freed him to come out as disabled and to use the technologies he needed to access the world he needed to live in. Of course, the story astonished me because he seemed to me a perfectly obvious cripple—although I certainly never had or would use such words—whom I could not have imagined occupying disability identity with ambivalence. He was the first disabled person I had ever spoken with about disability identity and experience, and certainly the first person I've known well and with whom I could identify who had a politicized consciousness about disability. He encouraged me to attend SDS around 1989, where I presented my work on Toni Morrison. At that first SDS, I was the only presenter in literary studies and found only one other person from an English department at the conference. But SDS gave me my first disability community. I learned there the solidarity of disability pride and shared mission. I also learned the complexities of cross-disability affinity and the challenges of competing and conflicting access situations. As many of us have remarked to one another, the incredible relief from the isolation of being the sole disability studies scholar and the sole disabled person at our institutions was moving and motivating.
The new disability studies that I found through Irv Zola and SDS was founded on the theoretical premise that disability is a social construction, an ascendant concept in the discipline of sociology in the 1980s. Social constructivism, as we know, underpinned what we call the social model in early disability studies and provided the basis to move the shared cultural understanding of disability from the so-called medical model into an arena of political and social justice and cultural critique. The SDS of that period of early, new disability studies was made up primarily of social scientists, special education academics, and people in applied fields such as policy and rehabilitation. The methods and assumptions of social science led the field. The primary interdisciplinary conversations were between medical anthropologists and sociologists about whether there was disability culture in the anthropological sense. The work I presented on disability in literature seemed very fresh to the social scientists at SDS.
Humanists working on disability, largely literary critics, found one another when many of us responded to the call for a focused conference, Discourses of Disability in the Humanities, held at the University of Puerto Rico, Mayagüez in 1992. The conference organizers told us that they had decided on the topic of disability because it seemed interesting and underexplored in the humanities. The call for conference papers in a compelling location like Puerto Rico gathered disparate scholars who were explicitly thinking about disability in their work as well as those just beginning to formulate disability analyses. The collegial connections and intellectual synergy that sprung from the University of Puerto Rico conference forged a sense of scholarly community that we each brought back to our home institutions and academic circles with new ardor. Many of us initiated field building by mobilizing the resources at our own institutions, our professional organizations, and our scholarly networks to build disability studies in the humanities to complement and expand the social-science-focused disability studies represented by SDS. These networks expanded quickly and joined with other work being done by historians and other cultural critics. Professional organizations in the humanities such as the MLA and the American Studies Association responded to incorporate a disability studies that stretched across the social sciences and the humanities. Humanities scholars increasingly attended and contributed to SDS so that conversations about disability studies expanded.
What the humanities, in particular literary studies, contributes methodologically and conceptually to a social science base of the earlier US, UK, and European institutionalized disability studies is a focus on representation, narrative, and aesthetics. Because the objects of study in humanities cultural analysis and knowledge work are often aesthetic objects, images, and narratives rather than social or cultural systems, we bring a critical rendering of the social construction of world and meaning that is complementary to social science knowledge work. So the constructivist analysis of disability that literary and other interpretive studies in their broadest incarnation accomplish is to reveal how representational systems involving language, image, story, and objects construct meaning and thus make our world. This multidisciplinary critical fusion between the social sciences and humanities has made disability studies more robust.
My own recent critical rendering of the social construction of disability as a material arrangement draws from both a materialist and narrative perspective on disability identity and experience. Using the terms misfit and misfitting, I emphasize the dynamic material relation between body and world that makes disability (Garland-Thomson 2011). A sustaining environment is a material context of received and built things ranging from accessibly-designed public spaces, welcoming natural surroundings, communication devices, tools, and implements, as well as other people. A fit occurs when a harmonious, proper interaction occurs between a particularly shaped and functioning body and an environment that sustains that body. A misfit occurs when the environment does not sustain the shape and function of the body that enters it. The dynamism between body and world that produces fits or misfits comes at the spatial and temporal points of encounter between dynamic but relatively stable bodies and environments. The built and arranged space through which we navigate our lives tends to offer fits to majority bodies and create misfits with minority forms of embodiment, such as people with disabilities. The point of civil rights legislation and the resulting material practices such as universally-designed built spaces and implements is to enlarge the range of fits by accommodating the widest possible range of human variation. What I have called the misfit that makes disability and disabled subjectivity can be understood as relational. "A misfit occurs," I suggest, "when world fails flesh in the environment one encounters" (2011, 600). We become disabled when what seemed to be the unremarkable and familiar bodies that we inhabit encounter an unsustaining environment. The concept of misfitting, then, offers an alternative narrative to the "What's Wrong with You?" accusation by explaining in new ways our exclusion from the social and material institutions where citizens of a democratic order accrue cultural and economic capital.
In the spirit of the feminist practice of situating the critic, let me explain some specific points of misfitting in my own development as a disabled person. Machines—now understood as technologies—were what kept me out; they are now what let me in. Before the logic of civil and human rights produced not just the requirement but the logic of accommodation and access, the entire built environment—certainly to include machines—did not recognize the human variations we now understand as disability and the ways of being in the world we now think of as disability identity. A civil and human rights logic has forced the built environment to begin to remake itself so that we can use it to exercise not just our civil rights but our activities of daily life as well. The built and social environments make disability, and they can help to unmake disability as we know it. The category disabled is necessary to pressure social orders to produce an environment which sustains not only normates but the rest of us as well. We need access to disability things and to resources as people with disabilities. We need disability identity to do this. As my story illustrates, people become disabled even when they're born disabled. What that means is that disability identity hails us through the material confrontation with misfitting.
Disability studies has developed vibrantly and diversely just as many of us who practiced it early on in the 1980s hoped it would. Several of the complex conversations in current critical identity studies I take to be most compelling are: questions of who has the proper authority to undertake disability studies, which often restricted and caused conflict within the early development of African American studies and women's studies; the promises of resistance, transgression, and radical antinormative critique as critical/political moves; the critical turn born of the social upheavals and refusals of the status quo and redistribution of power and resources that we think of as democratization, egalitarianism, and the civil and human rights movements of the modern era; the limits of social constructivism to account for material environments and the particularity of embodiment; and the limits of critical deconstruction of disability identity, intersectionality, human and civil rights, integration, and neoliberal capitalism. 4 Perhaps the issue critical disability studies loops back to most consistently and that underlies all these conversations is the question of who counts as disabled and how we should determine the boundaries of the identity category disabled.
Although this question about disability identity merits and has been addressed by many critical articles and books in disability studies, let me suggest here that one way to think through the broad shape of this argument is to briefly—and somewhat reductively—juxtapose recent arguments put forward by two disability studies scholars, one from the tradition of high critical theory and the other from the tradition of disability activism. I should say at the outset that there are many conversations that put forward some version of for and against identity—notably the juxtaposition of the chapters by Lennard Davis and Tobin Siebers in the fourth edition of The Disability Studies Reader (2013). But for my illustrative purposes here, the conversation I am putting forward between disability studies scholars understood primarily as academic and activist might provide a more trenchant example.
To discuss the question of disability identity, academic disability studies theorist Jasbir Puar puts forward, among several important arguments in her article entitled "The Cost of Getting Better: Ability and Debility," the oft-made point that all people can and will enter the constituency of disabled. This distinctive aspect of disability identity that Puar eloquently calls "anticipatory disability" universalizes disability and thus effectively authorizes anyone to participate in disability studies (2013, 179). In a productive gesture to address the troubled task of deciding who counts as disabled, Puar further expands the leaky borders of disability identity by proposing the useful concept of "debility." This critical gesture toward "anticipatory disability" globalizes the working definition of disabled built through civil and human rights legislation in a largely Western context to encompass a worldwide category of those identified through economic exploitation for "slow death" (177, 179). Once the shifting constituency of those who count as disabled under the logic of civil and human rights—however conceptually unsound that established group might be—expands beyond the identity formation process established through civil and human rights understanding, Puar moves logically from the fraught category of disability into the critique of neoliberalism that "Debility is profitable to capitalism" (181). This elegant critical move from disability to debility holds theoretical promise even while, and perhaps because, it abandons the strategically crucial categories of disability identity, the very unstable binary upon which the social justice logic of late modernity now rests. So disability wanes while the more accurate and stable concept of debility ascends, leaving at risk both accommodation and inclusion for people identified either socially or legislatively as disabled.
A perhaps strategic or perhaps innocent stability of the identity categories disabled and nondisabled underlies disability activist Corbett Joan O'Toole's entreaty to disability scholars published in a recent article in DSQ (2013). O'Toole begins her article, "Disclosing Our Relationships to Disabilities: An Invitation for Disability Studies Scholars" in the same place as Puar: that is, the problem of establishing the borders of disability identity. But the problem of disability identity for O'Toole calls for a different solution from that presented by Puar. Whereas the instability and ambiguous sociopolitical truth value of disability identity are Puar's grounds for dismantling disability identity categories altogether, O'Toole insists on the political utility of claiming subject positions within a taxonomy of disability identities. Claiming our relationship to disability, O'Toole argues, "creates spaces for new engagements." Moreover, O'Toole goes beyond calling for self-identification regarding disability identity and indeed assigns people she discusses in her article to disability identity categories based on her own assessment. Acknowledging social positioning in relation to disability, O'Toole argues, is a political act akin to coming out that discloses epistemological privilege and subjective relations to oppositional consciousness. "We need," O'Toole exhorts, "to examine our reluctance to support public disclosure, open academic inquiries into public signifiers, encourage public disclosure, and use signifiers of one's relationship to disability in all Disability Studies contexts."
O'Toole briskly supplies working labels for her disability identity best-practice disclosure plan, inserting them as examples throughout her article, as if to propose that if we feel ambivalence about accounting for ourselves in response to her question "What is your relationship to disability?" then she will do this work for us. O'Toole's suggested category claims range from "spouse, sibling, parent" to the work relationships of "co-worker, teacher of Disability Studies" or the political relationships of "advocate, ally" and finally the controversial heart of the matter: (disabled) (nondisabled)—all of which she suggests adding parenthetically after our names as a kind of qualifying adjective. Of course, O'Toole's recommended practice can amount to a coercive outing, a crude form of essentialism, stubborn anti-intellectualism, border policing, or—most generously—a challenging exercise in thinking through the work disability identity categories do in the world. I lean toward the latter.
Where Puar's contribution is to call out the fluidity of disability identification, especially over the lifecycle, O'Toole's emphasis is less on stabilizing disability identity than on locating identity in time and space to mobilize its political potential in a particular context. Puar and O'Toole complement rather than contradict one another, in my view, with Puar opening disability's borders and O'Toole showing us the political utility of at least provisionally marking identity borders. O'Toole's complete omission of conversations in critical disability studies about the instability of identity that are at the core of Puar's call to "move beyond" disability identity suggests not so much a lack of awareness or even disagreement about this deconstruction of disability identity on O'Toole's part, but rather an intention to establish an explicit activist practice in the academic arena of critical disability studies (Puar 2013, 180). The political gain of disclosure thus trumps the critical nuances of analysis.
Claiming or Questioning
My point here is not to either fully support or fully repudiate either Puar's or O'Toole's positions on the politics or ethics of identity categories. I want to cautiously offer that both positions and the practices that follow from them can and perhaps should be strategically mobilized by people with disabilities and their allies in navigating the world, building communities, and making new knowledge about disability. One way of thinking about the conversation I've highlighted here between Puar and O'Toole is to consider Puar's academic explication as metatheory about the limits of category making and the violence of representation and to consider O'Toole's activist call as applied practice. The proper relationship between the theoretical and the applied is not opposition but, rather, context shifting. What I am suggesting here is that disability studies might understand something like the applied ambiguity that comes from putting Puar and O'Toole in conversation as what Sedgwick (1997) calls a "reparative reading" of disability identity and culture. Such a reading is characterized by pleasure, positivity, and generosity. I would add that reparative readings of disability recognize resourcefulness, creativity, and persistence—the persistence of disability in the world and those who inhabit it.
Disability studies is flourishing, as I hoped to suggest in a recent review essay in America Quarterly (2013), and the conversation between Puar and O'Toole is evidence of its breadth and vibrancy. The development of varying critical threads within disability studies has contributed to the field's capaciousness. These complementary yet sometimes conflicting approaches range from disability studies in the humanities to queer disability studies, disability autobiographical studies, global disability studies, critical race disability studies, new materialist disability studies (my own current interest), postmodernist disability studies, and most recently postconventional disability theory (a term I have adapted from Margaret Shildrick) and Asian American disability studies (recently described by Mel Chen). 5 This list is only a sampling of the versions of disability studies currently practiced. They are best and most productively understood not as repudiations of one another, but rather as a conversational, collective endeavor that draws from a wide spectrum of critical traditions to address different audiences in the service of growing disability studies. We might practice disability studies solidarity just as we cultivate disability solidarity across categories. 6
I am recapitulating here in my own story of the material circumstances of fitting or misfitting to suggest how disability identity might operate in the social world of relationships and subjectivity. I offer my story of becoming disabled—of entering into disability culture—in order to make a cautious argument for the productive possibilities of identification as an opportunity for community and oppositional consciousness rather than disclosure as a confessional strategy. As both Linda Alcoff (2006) and Robin Weigman (2012) have argued, our identities have high critical value to us because we are social beings. They help us recognize ourselves and others and to relate to one another. They give us rituals of daily life, mutual relations, connections with the past, and bonds to communities. We all have ambivalent relationships with our multiple identities; they contradict one another; they constrain us; they sustain us. They give us and others meaning in both violent and comforting ways. Like all other meaning-making systems, pressed far enough they become incoherent—they become some version of human life itself: at once vital and decaying. As Puar points out, the border between disabled and not disabled is not just indistinct and fluctuating but is, in fact, illusory in some fundamental sense. But when disability calls, we need to answer. Many of us answer with a story of identification. Perhaps O'Toole's activist hailing practice can serve some of us as a call.
The conversation between Puar and O'Toole suggests that disability studies might not too quickly critically challenge the categories of disabled and able-bodied but ought rather to tolerate the ambiguity and even incoherence of that system; to investigate the possibilities for positive identity politics, disability pride, disability resourcefulness, and disability role models; to give up seeking psychoanalytic models for disability prejudice on the part of those whom we imagine as nondisabled; to stop framing disabled people as victims. We might stay with disability identity and tolerate its inconsistencies even while we recognize that "disability is itself an unstable category" (Davis 2013, 271). We can continue to historically contextualize disability identity and recognize the material conditions it both arises from and produces even while recognizing that in this project "the distinction between disabled and not disabled becomes fuzzier" (Puar 2013, 182).
So Puar is certainly theoretically correct about "the insufficiency of disability as a category," as well as the "the profitability of debility," following as she does Lennard Davis's argument for universalizing disability identity on the basis that all embodied humans are equally vulnerable (Puar 2013, 182). Davis claims that disability identification requires overidentification with oppression in order to achieve the group solidarity and unity necessary for collective political action. Following Wendy Brown's concept of "wounded attachments," Davis asserts that disability studies should move on from "memorializ[ing] that category based on the suffering of people who occupy it" (Brown 1993; Davis 2013, 269).
While shifting focus from suffering to access is crucial, rigid, coherentist rejections of disability identity and/or the social and political narratives of disability identity risk losing track of practices and narratives that re-imagine disability not as deficit or unremitting suffering but rather as an occasion for demanding equal access to inclusion and resources. Disabled people need and benefit from the specific technologies and resources commercial culture develops and markets to us so we can navigate our shared world. Even while the borders of the category disabled need to be recognized as porous, contextual, and dynamic, to dismiss the political category of disabled as it functions in the material and social world in which we live at this moment in the service of some anti-normative critical move ignores the reality that most disabled people who identify as disabled or are identified as disabled are excluded from life-sustaining resources because the extant world cannot accommodate us. The logic of civil and human rights forces the built and social environments to reshape so that we can function as citizens within those environments. Those environments are normative institutions of late modernity, and they are the only place where people can flourish. Access to a sustaining environment grants the privilege that we need to exercise self-determination and to flourish as modern subjects. 7
The point of my story here is simply that being kept out is not good for us and never has been. As people who identify or are identified as disabled, we move between fitting and misfitting. Disabled people do not necessarily suffer as a result of disability more than any people suffer. Human beings suffer because they are mortal and because the flesh is vulnerable, and we are interdependent with other people not just for our needs, but also to be alive and to flourish. Disability can be an occasion for suffering, but it can also be an occasion for joy, knowledge, and connection. Disabled people do not suffer inordinately, but the conditions for human suffering are increased when we do not have access to the resources we need. To flourish among others and exercise the privileges and obligations of citizenship, we need access to the institutions, however flawed they may be, that provide these resources, which all human beings need. Without access to resources to put up against the accusation of wrongness, we will only find ourselves where we were before the concept and enactment of civil and human rights demanded access. We will be back to the asylums and the street corners, where many of us still are today.
- Alcoff, Linda Martin. Visible Identities: Race, Gender, and the Self. Oxford and New York: Oxford University Press, 2006.
- Bogdan, Robert. Freak Show: Presenting Human Oddities for Amusement and Pleasure. Chicago: The University of Chicago Press, 1988.
- Brown, Wendy. "Wounded Attachments." Political Theory 21.3 (1993): 390-410.
- Butler, Judith. Giving an Account of Oneself. New York: Fordham University Press, 2005.
- Chen, Mel Y. "Asian American Speech, Civic Place, and Future Nondisabled Bodies." Amerasia Journal 39.1 (2013): 91-106.
- Cohen, Lizabeth. A Consumer's Republic: The Politics of Mass Consumption in Postwar America. New York: Vintage, 2003.
- Davis, Lennard. "The End of Identity Politics: On Disability as an Unstable Category." In The Disability Studies Reader, 4th edition, edited by Lennard J. Davis, 263-277. New York: Routledge, 2013.
- de Beauvoir, Simon. The Second Sex. 1949. New York: Vintage Books, 1973.
- Dubois, W.E.B. The Souls of Black Folk. 1903, edited by Henry Louis Gates Jr. and Terry Hume Oliver. New York: W.W. Norton and Company, 1999.
- Garland-Thomson, Rosemarie. "Disability Studies: A Field Emerged." American Quarterly 65.4 (2013): 915-926.
- Garland-Thomson, Rosemarie. "Misfits: A Feminist Materialist Disability Concept." Hypatia: A Journal of Feminist Philosophy 26.3 (2011): 591-609.
- Garland-Thomson, Rosemarie. Staring: How We Look. Oxford and New York: Oxford, 2009.
- Goffman, Erving. Stigma: Notes on the Management of Spoiled Identity. 1963. New York: Simon & Schuster, 1986.
- Keller, Helen. The World I Live In. New York: J.F. Tapley, Co., 1908.
- Kleege, Georgina. Sight Unseen. New Haven: Yale University Press, 1999.
- O'Toole, Corbett Joan. "Disclosing Our Relationships to Disabilities: An Invitation for Disability Studies Scholars." DSQ: Disability Studies Quarterly. 33.2 (2013): np.
- Puar, Jasbir. "The Cost of Getting Better: Ability and Debility." In The Disability Studies Reader, 4th edition, edited by Lennard J. Davis, 177-184. New York: Routledge, 2013.
- Sedgwick, Eve Kosofsky. "Paranoid Reading and Reparative Reading: or, You're So Paranoid, You Probably Think this Introduction is about You." In Novel Gazing: Queer Readings in Fiction, edited by Eve Kosofsky Sedgwick, 1-40. Durham: Duke University Press, 1997.
- Shildrick, Margrit. Dangerous Discourses of Disability, Subjectivity, and Sexuality. New York: Palgrave Macmillian, 2009.
- Siebers, Tobin. "Disability and the Theory of Complex Embodiment." In The Disability Studies Reader, 4th edition, edited by Lennard J. Davis, 278-297. New York: Routledge, 2013
- Solomon, Andrew. Far From the Tree: Parents, Children and the Search for Identity. New York: Scribner, 2012.
- Wiegman, Robyn. Object Lessons. Durham: Duke University Press, 2012.
- See, for example, Joan Scott, "The Evidence of Experience," Critical Inquiry 17.4 (1991): 773-97, as well as many postmodern critiques of the authority of the subject and identity itself.
Return to Text
- I thank Adam Newman for reminding me of the critical utility of Sedgwick's concept of "reparative reading."
Return to Text
- "I was born this way" has been secondhand to me for as long as I can remember. For any of you who know me personally, this is a good joke.
Return to Text
- Moreover, the concept of intersectionality and intersectional analysis—however unwieldy or disappointing that practice may have proved to be—has nonetheless provided continued awareness in our critical practice that we are all multiply identified in ways that complicate any single identity system analyses and that all these systems operate together and are always mutually constitutive and often converging.
Return to Text
- See Margrit Shildrick, Dangerous Discourses of Disability, Subjectivity, and Sexuality (2009) and Mel Y. Chen, "Asian American Speech, Civic Place, and Future Nondisabled Bodies," Amerasia Journal 39(1): 91-106.
Return to Text
- As disability studies evolves from critical enterprises such as laying out the social construction of disability and explicating representations to whatever is imagined as next in the field, its earlier methods need not be repudiated in the interest of evolution. In other words, the dialectical nature of scholarly inquiry in the development of a theoretical conversation does not need to follow the Oedipal model which has laid waste to the concept of disability identity and community in the interest of deconstructing the borders that establish identity.
Return to Text
- As Lizabeth Cohen points out in A Consumer's Republic: The Politics of Mass Consumption in Postwar America (2008), the rise of consumer capitalism in post-World War II America consolidated the roles of citizen and consumer so that to participate in the public sphere and exercise the rights and privileges of the Democratic citizen, one needed to become a consumer. Cohen shows that the American civil rights movement demanded desegregation in order to have access to the public spaces where citizen-consumers could exercise the rights and obligations of that role. So an unintended benefit of the economic growth in a late capitalist democratic order is that equality of access to the economic exchange of work and spending can function to desegregate previously excluded groups who had limited access to participating in the rights and obligations of citizenship.
Return to Text