Disabilities

Lesley settlement flags food allergies and campus dining

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Justice Department settlement with Lesley U. suggests that colleges may need to add specialized mealtime services for students with food allergies.

Review of Kim E. Nielsen, "A Disability History of the United States"

There's a mean streak at the heart of a certain kind of American optimism -- a rugged, go-it-alone, dog-eat-dog strain of individualism that is callous at best, shading into the sociopathic. It values independence, or says it does, but only by regarding dependency as a totally abject condition. The reality that illness or old age threw even the hardiest pioneer into reliance on others hardly factors into this worldview; the notion that civilization implies interdependence is, for it, almost literally unthinkable.

As I say, this outlook can manifest itself as optimism (the future is one of unbounded possibility, etc.) not always distinct from wishful thinking or denial. And it’s just as likely to pour out in resentment that is keen, if not particularly consistent. “I am a victim,” the logic goes, “of all those people out there playing victim.” Absent a frontier, the frontier spirit starts wallowing in self-pity.

The absence of pity of any sort from Kim E. Nielsen’s new book A Disability History of the United States, published by Beacon Press, is hardly the most provocative thing about it. Nielsen, a professor of disability studies at the University of Toledo, indicates that it is the first book “to create a wide-ranging chronological American history narrative told through the lives of people with disabilities.” By displacing the able-bodied, self-subsisting individual citizen as the basic unit (and implied beneficiary) of the American experience, she compels the reader to reconsider how we understand personal dignity, public life, and the common good.

Take the “ugly laws,” for instance. During the late 19th and early 20th centuries, major American cities made it illegal for (in the words of the San Francisco ordinance from 1867) “any person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object” to appear in “streets, highways, thoroughfares, or public places.”

The laws were unequally enforced, with poor and indigent people with handicaps being the main targets. For one thing, the impact of the Civil War plus the incredible frequency of industrial accidents meant there were more unsightly beggars than ever. But while deformed and damaged bodies were being cleared from the streets, there was a pronounced public appetite for the exhibits at “freak” shows.

Now, the two phenomena in question have been studied in some depth over the years. A monograph on the ugly laws appeared not that long ago -- and while there have been more detailed studies of the world of “human oddities” than the late Leslie Fiedler’s cultural history Freaks: Myths and Images of the Secret Self (1978), I doubt many have been nearly as thought-provoking. Nielsen’s historical narrative is presumably meant for undergraduates and the general public, so it’s natural to lose nuance in the treatment of either topic. But the breadth of the survey also means there is a gain in perspective.

No direct link exists between the policing of disabled bodies and their exploitation as entertainment, yet there is a connection even so. “In contestations over who was fit to be present in the civic world and who was not,” Nielsen says, “people with disabilities often found themselves increasingly regulated. Those not considered fit for public life were variably shut away, gawked at, [or] exoticized.”

It was a far cry from the norm of a century earlier. “The general lack of discussion and institutional acknowledgement of physical disabilities” in 17th- and 18th-century America “suggests that they simply were not noteworthy among communities of European colonists in the period before the Revolution,” Nielsen writes. “Indeed, it suggests that such bodily variations were relatively routine and expected – and accommodations were made, or simply didn’t have to be made, to integrate individuals into community labor patterns.”

Over time, in other words, disability became abnormal. Or at least it quit seeming “normal” in the way that it once did: a hard fact of life, to be sure, but just in the nature of things. Consider the way severely wounded veterans of the Revolutionary War reintegrated into the life of the new Republic. Citing recent historical work, Nielsen indicates that they “labored, married, had children, and had households typical in size and structures, at rates nearly identical to their nondisabled counterparts." They “worked at the same types of jobs, in roughly the same proportions” as well, and as a group they experienced poverty at the same rates as others of their background. The wounded returning from later wars had a much harder time of it.  

Not all handicaps are created equal, of course. Nor is it self-evident that they should be lumped together (war wounds and birth defects, blindness and retardation, mental illness and dwarfism) under the common heading of “disability.” Nielsen sketches the changing ways political and medical authorities responded to the afflicted -- by trying to help them, or hide them, or both. In any case, the trend was to define them not by what they could do, but by their handicap. At the same time, attitudes towards the disabled were becoming tangled together with other prejudices. If certain people weren’t allowed to vote or otherwise exercise much power, it was only because their race, gender, or foreign origin left them physically or mentally unfit for it. Stigma and inequality fed off one another.

The very idea of being profoundly, inescapably limited in some way makes for anxiety when the cultural norm is the expectation “to create successful and powerful selves” that are ready to “stand on our own two feet” and “speak for ourselves.” Nielsen points out that the last two figures of speech are part of the problem. There are people who literally can’t “stand on their own two feet” or “speak for themselves.” While my exposure to the kinds of disability activists Nielsen writes about in the final pages of her history has been limited, they do seem to have an ironic and sarcastic (rather than po-facedly indignant) response to such "able-ist" imagery -- regarding it less as an insult than as evidence that the speaker is a bit thick. Which is usually true. The "unchallenged," as we might be called euphemistically, tend to be somewhat lacking in imagination and insight about their struggle for greater equality and autonomy.

And yet they have won some battles – by demanding help. By demanding a redistribution of resources on the basis of their intrinsic right, as human beings, to the dignity they could not enjoy otherwise. Someone in a wheelchair can zip around the neighborhood just fine, getting to her job at the pharmacy on time, provided the curbs are made accessible. And no, the person in the wheelchair is not responsible for paying for that, any more than her customers are responsible for mixing their own medications. Interdependence is not a failure of independence; it is the condition for enjoying the sort of independence that means anything at all.

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Essay on the experience of teaching a student with intellectual disabilities

To protect the student’s privacy, the author of this piece has chosen to remain anonymous and has changed all potentially identifying details.

Almost daily I am reminded of the truth in Oppenheimer’s observation: The best way to learn is to teach. Whether the lesson is academic or ethical, there is no other activity that so clarifies one's thoughts. Through questions, misunderstandings, and occasional challenges, students reacquaint us with uncertainty and doubt. They force us to reconsider what we believe ourselves to know and reckon with what we do not. I am most acutely aware of this when the only thing I can say with certainty is, "I don’t know."

This semester I have said those three words more often than I did during my first year of teaching. For the last 14 weeks I have been struggling with some variation of the question: What should I do about Jacob?

Jacob is failing my course on the memoir. Well past the withdrawal date and just days away from the final, his average is 39. Out of eight writing assignments, he has received credit for one, and this was partial. On exams, he scores something just better than statistical chance.  

By itself, this would be a concern, but would not keep me awake at night. There are other students — 3 out of 57, to be precise -- who are also failing the class. After more than a decade of teaching at a commuter campus where many students are not only the first in their families to attend college but the first to earn a high school diploma, I've come to accept that a good 5 percent of those enrolled in my lower division courses will not pass. And so it is not Jacob's performance that worries me, but what I know about the reasons behind it.

Depending on which of the counselors in the disabilities office I am speaking with, Jacob is either "intellectually disabled" or "cognitively impaired." In the words of my generation and the ones still used by those without special training, he is "slow" or "mentally handicapped."

We were just a week into the term when I began to suspect that Jacob was having trouble. I was in my office going through the in-class writings I’d collected that morning. Since it was the first written work I’d assigned, I’d kept the requirements simple: provide a brief summary — four or five sentences — of the first three chapters of Girl, Interrupted. More than anything it was a reminder to complete the day's reading before class and a chance to provide students with a gentle introduction to my expectations and grading policies.

Taken as a whole, the stack of 60-odd papers atop my desk reflected the wide range of skills and capacities — of comprehension, expression, and prevarication — I’ve come expect. The majority satisfied the requirements without being remarkable. A few, for better and worse, stood apart and furnished the left- and right-hand tails of the normal distribution. But Jacob's submission did not fit. 

His penmanship was not exactly neat, but it was precise and with it he'd filled nearly half the page. What he'd written, though, was more connected to the title than the book itself: There was a girl. A girl wrote this. A girl says what she did. The girl was stupid. Building whole paragraphs around the title isn’t a novel strategy and I’ve seen it used, with varying degrees of creativity, by those who haven’t cracked the book. Jacob’s paper, however, didn’t seem to belong to the same category. 

At a loss, I wrote what I had on the other papers that had not met even the minimum standard for passing: No credit. I do not find evidence that you read the chapters. If you are having trouble with the material, or do not understand the instructions for assignments, please come see me during my office hours — 2-4 Monday and Wednesday.

But Jacob did not come to my office or contact me. After writing the same grade and message on his next two papers — the only modifications being a change of the word "please" to "you need to" — I knew that something extra needed to be done. I just didn’t know what, exactly, that should be.

From the first day of classes I'd known that Jacob was registered with the Office for Students with Disabilities. Before I'd even handed out the syllabus, he'd given me the familiar cream-colored envelope that contained a summary of the Americans With Disabilities Act of 1990, his counselor’s contact information, and the special provisions and supplementary resources she'd recommended for him.

The list of accommodations to which he was entitled was extensive: designated volunteer note-taker to be secured by instructor, extended time — up to double — for exams and in-class assignments, ability to complete tests and written work in a distraction-reduced separate location, transcriptions of all audio and video and materials, alternatives to oral presentations, preferential seating near the front of the room, permission to record lectures, and tardiness leniency.

Nothing in the packet I had been given offered any indication of why he needed these things. Information about a student's disability is confidential. Specifics about the nature of the limitation or illness are shared only on a "need to know" basis. And in the rare event that an instructor is deemed in need of knowing, it is unlikely that she will become privy to the exact nature or extent of the condition. For instructors it is, then, a kind of binary category — a student is either designated as disabled or he is not. By law and the university policies that derive from it, in making the necessary accommodations, I had already done all that I was obliged to do. The onus was on Jacob to seek additional help if he needed it, to accept or decline my invitations to discuss his performance, and, most of all, to determine for himself whether he was able to meet the requirements of the course. 

Over the years I have taught a number of men and women with physical, mental, and learning differences. Until Jacob, I had not felt the need to review their performance with anyone other than the students themselves. To discuss someone enrolled in one of my classes, by name, with a third party, outside of the student's presence and without his knowledge or consent is something that seemed to me (and still seems) a violation of privacy and trust. The decision to contact Jacob’s counselor, then, was not an easy one to make. But I had other concerns that stemmed, directly, from my knowledge of his disability status. At the front of these was a dilemma about whether or not I had an additional ethical obligation to Jacob, a duty that went beyond the provision of accommodations. 

From the few interactions I'd had with Jacob and what I’d seen of his work, I had the impression that he lacked the intellectual capacity to either benefit from or pass the course. But more troubling was my sense that his limitations prevented him from fully understanding his situation. 

Students who have not been identified as having a disability can display a wide range of traits, attitudes, and abilities. When one seems to be struggling, either academically or emotionally, I do not feel automatically compelled to address the matter. I try to use my best judgment. I make the extra effort to reach out, or I don’t. I pull them aside after class, or I don’t. I write something pointed in the margins of their tests and assignments, or I don’t.  I make calls that are informed by experience, even though I know that these will be imperfect.

And I feel able to exercise this discretion because I presume that those with whom I am interacting are, for the most part, not unlike most other students I’ve encountered. Rightly or wrongly, I begin with the premise that they share some minimal level of cognitive and social functioning. Too, I proceed from the idea that whatever behaviors or ability levels I encounter are squarely owned by the individual whose name is on the class roster. I do not find myself wondering whether it might be a function of illness, chemical imbalance, learning difference, cognitive deficiency, or mental condition. While I may speculate about underlying issues, the pool of possible explanations I draw from is qualitatively different.

When I phoned Jacob’s counselor, it was with the hope that she would tell me that my impression of Jacob was wrong. Or, at the very least, provide some practical advice for working with him, while at the same time absolving me of responsibility for the outcome. And so in some ways I wish that I had not made that call. I did not want confirmation that the work I had asked him to do was beyond his abilities. I did not want to know that he was, most likely, unable to average his grades or grasp their significance. I did not want to hear that he was a senior and scheduled to graduate in December. I did not want to listen to her say ,"The only thing I can tell you is that you should hold him to the same standards as his peers." I did not want learn that both Jacob and I had been set up for failure.

Meeting Jacob has prompted me to reconsider my roles as an educator and the functions and purposes of higher education generally. His situation and, by extension, mine, raise a number of difficult questions.

But when it comes to putting them down here, in print, I find myself struggling for words. This isn't because the words don't exist or because I can’t locate the ones I want. Instead, I am afraid of using the wrong term or saying the wrong thing. I am aware of the need to tread carefully. And that is, I think, part of the trouble.

It's rare that a week goes by without my engaging in a conversation with a colleague or reading an article about the issues of student preparedness and ability. These discussions are commonplace and we have developed the necessary vocabularies and frameworks for having them. This holds even when we bring in such thorny matters as race, ethnicity, class, and gender. We can and do talk about how changes in the student body affect our experiences and policies in the classroom and how these, in turn, are reshaping postsecondary education. But we seldom mention one of the fastest-growing groups on campus: students with disabilities. 

The Americans With Disabilities Act and its amendments have allowed men and women with physical, psychological, and emotional impairments to participate in higher education in a way that previous generations could not. At the same time that this legislation has transformed the lives of millions of students, it has also transformed higher education: Roughly 11 percent of first-year college students identify as having a disability, a figure that will likely increase in the coming years, with the greatest growth expected in what is often referred to as "invisible disabilities," a category that includes learning disorders, cognitive impairments, ADD/ADHD, and other conditions that are not quite so easily diagnosed or straightforward in terms of the accommodations required by the students. Campuses that receive public funds must maintain a Section 504 compliance office, which is charged with meeting the needs of those who have documented disabilities and require support services. Instructors are required to make “reasonable accommodations” for those who qualify for them. 

It goes without saying that the developments of the last two decades have affected students, instructors, individual campuses and the institution of higher education. And so long as it goes without saying, we are kept from addressing the benefits and challenges — both practical and philosophical — these create. 

Over the last 14 weeks I have had the chance to experience these firsthand. In the process of thinking through how best to balance my obligations to Jacob with those I have to my other students, my discipline, and my vocation, I have formulated, imprecisely and in halting language, a number of questions related to teaching students with impairments and, more broadly, the changing nature of postsecondary learning.

  • What responsibilities do we, as instructors, have to our students? Are we differently obligated to individuals based on what we know about their particular aptitudes and personal circumstances?
  • Should instructors be allowed to participate in determining what adjustments a disabled student should receive?
  • How do we define "reasonable accommodations"?
  • In cases where instructors are required to make special provisions or alterations to our courses, are we entitled to ask why these are necessary?
  • Do formal diagnostic categories and special designations facilitate or hinder our appreciation of human diversity?
  • Under what conditions is a student with an impairment accountable for his or her actions and performance and when should we excuse or overlook these as functions of the individual’s condition? How does one separate an individual from his or her disability?
  • Is it possible to hold a student to "the same expectations as his peers" while, at the same time, making substantive modifications and adjustments to grading structures and assignments?
  • How can admissions criteria and course expectations be modified so that we remove barriers to learning for those who are qualified, while simultaneously maintaining academic rigor?
  • How do we define equality of access? How is this related to equality of expectations?
  • What does it mean to say that a student is prepared — intellectually, socially, and physically — for college?  Should there be some minimum standard and, if so, what metrics will be used to determine qualification?
  • Is it realistic, or even desirable, to make the attainment of a college degree a requirement for full membership and recognition in society? How might we reimagine our standards for inclusion so that we honor the full spectrum of human potential?
  • What is the purpose of higher education, for both the individual student and for society as a whole?

Engaging with the issues raised by the increased presence and visibility of students with disabilities, no matter how messy or uncomfortable, is something that we — instructors, administrators, advisers, students, and parents — can no longer afford to avoid. And, once we get beyond our squeamishness, we may find that the dialogue surrounding these seemingly particular concerns can shed light on other issues related to equality, diversity, and the meaning of education.

I still do not know what I should have done for Jacob. I only know what I have done, what I will do, and how I explain these to myself. I have continued to mark each of his papers and exams according to the guidelines I have set for the class as a whole, though I make a point to find something positive, no matter how small, to say about his work. A few days from now, I will do the same with his final. And even though holding him to expectations I know that he cannot meet seems like a form of cruelty, I justify this, to myself, with terms like "fairness" and "honesty."

There isn’t, at least as far as I can see, a right answer. Like Jacob, I was placed in an impossible situation. And, like him, I did the best that I could with what I was given. 

Here I am reminded of another quote, this one from the lyric poet Rainer Maria Rilke: "Be patient toward all that is unsolved in your heart and try to love the questions themselves. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions."
 

The author of this article is anonymous.

Appeals court rejects suit by ex-student against medical school

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Federal appeals court rejects suit by woman kicked out of medical school, and backs college groups on issues related to bias claims.

college's e-mail to faculty about language used in class spurs questions

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A dean at William & Mary sends out an e-mail to faculty members asking them not to use the word "retard."

University Accused of Housing Bias

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Nebraska-Kearney faces federal discrimination charges -- which it disputes -- after barring student from bringing therapy dog with her to live in university-owned apartment.

Bachelor's for Autistic Students

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For some students with autism, the idea of operating in the social environment of a college classroom can be so debilitating as to derail the pursuit of higher education at all. For those who do enroll, their condition can make it difficult to succeed in a traditional classroom setting.

It Shouldn't Be So Hard

After the cover letter and CV, there is probably no single criterion more critical to job candidates’ success than their ability to demonstrate collegiality. The ideal job candidate must be able to smile, make eye contact, and converse smoothly on topics ranging from her own research to her favorite light reading. He must be able to give a formal presentation of research, but also deliver a quick "elevator speech" on any aspect of that research at any moment.

The Real Issues at Gallaudet

As the smoke settles over the Gallaudet University campus, there’s still a lot of steam rising. Now that the Board of Trustees has decided to conduct a new search for a president of that institution, there are still heated emotions and fuming misunderstandings that surround this event that captured the attention of the media and the nation. Given the sturm und drang of the past weeks, it’s possible to make a few observations.

First, and most amazingly to me, the internal events at a small educational institution for the deaf have become a major media event. When I was a small boy with two deaf parents growing up in the Bronx in the 1950’s, I never imagined that the issue of deafness and the problems at a deaf university would ever end up on the front page of The New York Times. But the fact is that deafness and disability in general have gone from a marginal and marginalized experience to one that is central to the fabric of this country. Whether we are arguing about Terri Schiavo’s right to live, the fate of prenatal genetic screening, or sign language at Gallaudet, we are still, in effect, saying that disability and deafness are front and center in our sense of what it means to be human. Whereas in the past to be disabled or deaf was to be abnormal or somewhat inhuman, now we are beginning to define our humanity in a dialogue with our disability.

So the events at Gallaudet were momentous not just because a little university had an internal disagreement but because the issues raised around identity resonated with the general public. One issue that surfaced early was that Jane Fernandes, the candidate chosen by the trustees to be president, was not a "native signer." What this means is that although Fernandes was born hearing impaired, she didn’t learn sign language until graduate school. Reportedly her signing isn’t fluid and natural -- she in effect speaks sign language with a heavy accent and in a way that most deaf users of ASL would feel was inadequate.

For non-deaf people, this issue was perhaps the hardest thing to understand. Why would anyone reject a president for not being "deaf enough" when the person was in fact unable to hear since birth? The difficulty might be easier to understand if you imagined deciding to elect a president of the United States who spoke with a heavy accent and whose command of English was less than perfect. Add to this the fact that one of the new definitions of being deaf isn’t that your ears don’t work -- it’s that you belong to a linguistic community the way that Hispanics or the French do. Your community has a literature, a culture, a history, and a language -- but the leader of your community doesn’t share fully this cultural palette. Wouldn’t you want someone who was fully of your identity?

This argument, made early on in the anti-Fernandes campaign, was quickly shot down within Gallaudet for a number of reasons -- although the press continued to mention it as a factor in the demonstrations. The logic behind the “not Deaf enough” argument was flawed because the “deaf community” or DEAFWORLD, as the ASL sign indicates, is broad enough to include a range of people from hard-of-hearing to profoundly deaf, from those whose parents insisted on oral education to those who attended exclusive schools for the deaf that only used ASL or other sign languages. There are deaf people who use real-time captioning and don’t know any sign language. And of course there are the children of deaf adults (CODA’s) who are native signers but may be hearing. Do we really want to say that some of these people aren’t "deaf enough?" Would we want to exclude various people of color because they weren’t "black enough?"

The argument at Gallaudet quickly moved on from this starting point to other issues around Fernandes. Here the argument stopped being a national issue and became a local one. Many on campus didn’t like the selection process, felt it wasn’t open enough to student and faculty input, and felt that some candidates of color were passed over. Other folks on campus felt Fernandes, who had been in the administration of Gallaudet for a long time, wasn’t a "people person" and had made some unpopular decisions. Now the issue becomes one of bottom-up student/faculty governance versus top-down administrative decision-making. The by-laws of Gallaudet specify that the job of picking the president is solely that of the Board of Trustees, but any institution can only work if the consent of the governed is factored in. What happened at Gallaudet was that there was a loss of confidence in the administration and in Fernandes. And, in turn, both the administration and Fernandes seemed singularly inept in being able to slow down the protests and bringing rational discourse and process to Gallaudet. Instead, they chose, until Sunday, to “stay the course.” Even The Washington Post wrote an editorial in which it advised the Trustees to hold fast.

But “stay the course,” as we’ve learned the hard way, isn’t a particularly good strategy, especially if the course is a disastrous one. There is something to be said for the groundswell democratic process that happens from time to time on campuses and elsewhere. When people take to the streets, when teach-ins and public discussions transform a body of people so that they are united against a particular policy or person, then a kind of muscular democracy is taking shape. Of course, there is always the danger that this kind of improvisational democracy can become mob rule. But the flip side of this is that decisions by the appointed few can become tyranny. Those of us who recall issues from the past like civil rights, the Vietnam War, apartheid, sweat shops, and the World Bank will also remember how effective and important campus protests were.

As it turns out, the trustees were able to read the visible signs of discontent on the part of the students and faculty at Gallaudet, voting to restart the selection process. The good that will come out of this is that this new selection process will have to be more open, sensitive to the issues, and mindful of issues around deaf culture, affirmative action, and democracy in general.

But Gallaudet itself will have to learn from these trying times. First and foremost, I’d advise, as someone interested in the subject but as a non-Gallaudet person, that the issue of "not deaf enough" isn’t going to go away, although it may have dropped out of the Fernandes discussion. New calls for Gallaudet to become an ASL-only campus (now courses are taught in a variety of ways, including orally) smack of a kind of new deaf elitism.  While it is more than legitimate to expect students to learn ASL (as it would be for students attending the Lycée Français in the United States to learn French), there must be ways to insure that people whose ASL isn’t up to snuff don’t get snuffed out in the education process. After all, identity is a complex and fragile thing. When you try to make it ironclad and rigid, you end up enforcing the kind of identitarianism that created discriminatory behaviors in the first place. Imagine the case of a person whose parents chose cochlear implants for them at a very early age, but now wants to come to Gallaudet and explore what it means to be deaf. Would there be room for such a person in an ASL-only environment?

The second area to develop at Gallaudet is a more democratic process for decision-making. Most people don’t realize that Gallaudet is one of a small number of universities (the military academies and Howard University being among the others) that receive substantial operating support from the federal government. The reason for this status is complicated, but at base initially was for Gallaudet a kind of paternalism on the part of the nation toward deaf people. While this notion that the nation had to protect and educate deaf people turned out to have great benefits, the legacy of paternalism remains. Perhaps the by-laws of the university reflect this stance, and it would seem a logical and progressive goal to increase the democratic processes at Gallaudet so that the legacy of paternalism can be erased forever.

Finally, it would be only right and just for all sides to bury the hatchet and look toward the future. There is no question that Jane Fernandes was on paper a very viable and possible choice to be president of Gallaudet University -- only real events in the real world changed all that. The trustees did their best, the students and faculty did their best, and in the end a solution was reached. There are no bad guys in this story, only passionate positions and a struggle for justice.

Author/s: 
Lennard J. Davis
Author's email: 
info@insidehighered.com

Lennard J. Davis is professor of disability and human development at the University of Illinois at Chicago and the author of Enforcing Normalcy: Disability, Deafness and the Body (Verso) and the newly re-edited second edition of The Disability Studies Reader (Routledge).

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