Sheila Black


Last fall I inaugurated a course on the Literature of Disability at the large State University where I teach. The first day, I stepped in front of the class, I felt like—to steal a phrase from Anais Nin—"a spy in the house of love." I have X-linked Hypophosphotemia (XHL), a genetic disease sometimes classed as a form of dwarfism; I walk oddly; my legs are crooked, but while I once looked much more obviously "disabled," now in clothes—especially in a long skirt, black stockings, and seated behind a desk—I can almost "pass for normal." As we went around the room, introduced ourselves, went through the customary ice breaker and expressed "our interest in taking this class," my students, a mixed, rowdy, and generally genial bunch all gave what I have to say is the standard first response to the subject of disability: "We are all beautiful, every one of us, and everyone should know that and everyone should love everyone else." Which reminded me (unfortunately) of the first poem about disability—though I didn't call what I wrote poetry then—I ever wrote, one I never finished, one, in fact, which never went beyond the following two lines:

She hated the cruel ones,
but she hated the kind ones more.

This may well be a statement impossible for anyone but someone with a disability—a visible disability—the kind of disability that leaps out and shouts at you at first sight—to understand. And in case you don't, I will explain. I was remembering my childhood in the 1960s when political correctness around disability was barely a concept. In those days, people tended to be either thoughtlessly callous on the subject (“You aren't normal, good thing you are smart, a pity you won't get married, have kids,” etc, etc.) or overwhelmingly sympathetic--teary-eyed, hand-clutching, proffering gifts, imagining you a saint. And bracing and infuriating as I often found the first category of response, the second was invariably worse: more dispiriting, more limiting, more crushing.

As a child, I was given a variety of books about "people like me." I remember only two—the first not a single book--but a myriad of biographies of Helen Keller; the other was a book called Karen by Marie Kilillea. The story of a girl with cerebral palsy as told by her mother, the book is usually described as “heartbreaking, heartwarming and inspirational.” And there is, in truth, much that is terrible about the way Karen is treated and affecting about how her mother fights for her (for instance, Karen's mother was one of the founders of the Cerebral Palsy Association). But even thirty years later, I can recall with awful vividness the tremendous mix of emotions I felt on reading and rereading Karen. The plot was fairly straightforward: Other people, normal people were horrible to Karen, persistently and acutely horrible. She is teased and mocked and told she can't do anything; yet whatever is done to her, Karen, with the love of her supportive family, behaves angelically. She always turns the other cheek, is always so much nicer and kinder and better than those other normal people that you cannot help but see that she is blessed or as her mother puts it "Jesus loves you more and that is why you have to suffer." Naturally, I loved this story in many ways, but I also felt profoundly uneasy each time I read it; I was no Karen. I was proud and selfish and furious when people made fun of me and, far from turning the other cheek, I often talked back or fought back. I was not filled every minute of every day with a "love of life despite everything," as Karen so patently was.

Helen Keller, who, in the stories I read, wrote beautiful fairy tales about the Autumn leaves and adored her kind teacher Annie Sullivan, presented a similar model. It is very interesting to me that until I was quite grown up I never knew the other Helen Keller—the activist, the woman who opposed war and economic injustice and fought for the civil rights of women and African Americans. But there was a part of Helen's story—even in those simplified biographies—which I did love, and, perhaps tellingly, it was the chapter in my Scholastic reader in which deaf and blind Helen is described as a “small monster,” tearing up the parlor, throwing food, knowing exactly how to make her feelings known. I was horrified, of course, at how very bad Helen was, but I was also secretly (or not so secretly) thrilled; it seemed to me though I could not have put it into words that despite everything it might be better to be a monster like the untamable Helen that to be so good and so very ground down as the angelic Karen. None of which, strictly speaking, directly had to do with the pedagogy of disability or did it?

As I stood in front of my class, listening to my good, kind, well-meaning students speak of beauty and love, I thought to myself, in the words of another poet, “lies, lies and a grief.” It seemed important not only to explain what was wrong with the constructions of disability presented in my childhood readings, but to give them new prisms through which to view the disabled.

The challenge for me was plain. How can the literature of disability or the teaching of the literature of disability inspire a complex, honest, and careful dialogue of disability? How can it avoid the traps of discourse, which exist (it must be said) in the lives of disabled men and women?

I decided that evening, for my own enlightenment to list a few common lies—and I am using the word loosely here—I had heard in my own experience of disability along with my responses to them.

Lie # 1: We are all the same, and I don't see any difference between anyone based on appearance.

(To which I always want to ask why there are not disabled women (or men) featured in newspapers, magazines, or advertisements at roughly the same proportion, at least, as we appear in the general population?)

Lie # 2. I am really inspired by what disabled people can achieve and how it actually makes them achieve more in a way or be better people.

(This is a hard one to address; for at age 47 I can finally acknowledge the degree to which I love and even value my disability. On the other hand, I am uneasy with the implied deficit or supplement model this statement suggests—specifically the notion that being disabled must ‘gift’ me with other qualities which somehow make up for my disability in the mysterious department of fairness. For instance, I may have crooked legs but I have an extra big heart. In fact I am just nicer by far than other people (or smarter or more thoughtful--a real saint) and all because of my crooked legs.)

Lie # 3: Viz-a-viz Sex and power: These are things disabled people never lust after or enact.

(Response: Being a saint may be a tempting position for us disabled persons—it keeps people from beating up on us for one—but it is also a profoundly powerless position, not a fully human one.)

The French philosopher Michel Foucault, who is usually considered one of the founders of post-structuralism (though he would dispute this characterization), had the clever idea that often we think we are liberating ourselves from something by talking about it, but discourse itself often serves a normalizing and/or coercive function. Foucault is famous for his suspicion of such soft sciences as sociology, anthropology, psychology, etc. He is interested in questions of how such “ knowledges” are produced and what can be seen to be their function. Part of Foucault’s project is also to critique Enlightenment ideas of man's improvability—ideas that have had severe and specific consequences for the disabled. We tend to view disability in pre-modern times as a dark ages, in which the disabled were, on the whole, severely mistreated or not treated. Yet, following Foucault’s insights, in fact we know little from this period about who was viewed as disabled and how. Furthermore, as I have suggested with my small list of “lies,” the modern discourse of disability, while perhaps making “disability” a topic of discourse, tends to offer only a few “modes” for the disabled person to define him or herself—most circling around the twin poles of poor victim/unfortunate or wonderful person/saint/inspiration to others. I, like most of the so-called disabled, have frequently cast my own story in one mode or another, or sometimes even made heroic efforts to combine them:

I am a victim who has suffered horribly but also a happy well-adjusted (wife/ mother/profess- sional) who has integrated my disability successfully (and unobtrusively!) into my everyday life.

The problem of such “stories,” or “locations within a discourse,” is the veil they place over the specific experiences of disability, and, more pressingly, the way they facilitate the bigger threat the disabled face—that of erasure. Within such stories, the disability either “subsumes” the person beneath or the person is seen as “overcoming,” and thus somehow erasing the “disability.” In addition, such stories tend to strategically position the disabled person as “non-threatening,” or “no challenge to things as they are.” As I said to my students, the idea that “we are all beautiful and the same underneath and should all just love each other,” is at once a true and lovely notion and the most pernicious erasure of all because it denies the dialogue about disability, which is so effectively silenced in most of our daily discourse and certainly within our media outlets in general.

For example, when was the last time you saw a disabled person who was not being featured as an inspirational example or as part of a charitable appeal? Who was it? And how was he or she presented? In addition, what does the word disabled mean or not mean to you? The range of disabilities is so very broad and the experience of disability so various that it seems unfortunate that the appearance of the disabled in most books, films, television shows, and advertisements reduces a continent to a fairly small neighborhood—a soap opera, if you will, stocked with a small roster of familiar types:

Burden, victim, sufferer, inspirational and heartwarming survivor

Of course, the elephant in the room, as Lennard J. Davis points out in his brilliant essay “Constructing Normalcy” is the whole entire concept of “normal.” Davis uses as his epigraph Theodore Adorno's famous quote:

"If such a thing as a psycho-analysis of today's prototypical culture were possible...such an investigation would needs show the sickness proper to the time to consist precisely in normality.”

That seems as good a place as any to begin to consider what a literature of disability might or should consist of, for how would we define disability (or ourselves as disabled) without the persistent bedrock of normal? And perhaps this is why I am suspicious of categories of literature that foreground disability without locating it within a larger political or social framework or without a persistent consideration or analysis of ‘normal” I would also argue that any work of the literature of disability should be considered, first, as literature that is to say for its examination of the vicissitudes of a particular human life or lives. I would also argue for humor, sex, multiple perspectives. In short, in deciding what books to teach for a course on the Literature of Disability I chose books I liked as books. The list I eventually came up with was by no means comprehensive or scientifically arrived at or able to be universalized; it consisted rather in what I knew already and what I was reading at the moment (I might add, as well, that it left off a good many people I wish I had included such as Petra Kuppers and Kenny Fries, Stephen Kuusisto and many others. Indeed the number of writers today producing literary works of disability has grown exponentially and keeps growing.). There were, however, a few types of stories I purposefully left off.

I was not very interested in the pure victim story, unless unusually thoughtful, unusually self-interrogating. I was also, for obvious reasons, even less interested in the heartwarming inspiring version of the “poor me” story. I was more interested in stories—good stories with :"real" complex characters and complex trajectories; stories that did not necessarily seek to resolve or answer the question of disability either from the point of view of author or reader, which is not say that the works I chose did not have a direct political significance.

The poet Philip Levine once declared that it was impossible to write truthful poetry that was not political. As an example, he said that if you were to make a documentary film about “the way people live in the United States," many people would not like it, “they would find it an intensely political movie. And they’d be right….” I think this is true and particularly so for the disabled writer or for any writer honestly tackling the subject of disability; simply by describing we make political statements.

For instance, among the books I chose for the class, was Sophocles’ play Philoctetes. The story of a great Greek warrior abandoned on a desolate island because of the offensive wound on his foot, the play argues that "civilization" as it has formed is often more savage and duplicitous than “nature” in terms of how men treat other men. Sophocles uses the treatment of Philoctetes by the other Greeks to explore the notion of fate and our responses to it. Philoctetes is victimized through no fault of his own. Yet this gives him an understanding of the true nature of experience that his antagonist, the much smoother and more manipulative Odysseus, can barely reach at. In his essay The Wound and the Bow, Edmund Wilson describes Philoctetes’ wound as inseparable from his “genius.” This points up something we can feel without being easily able to articulate—namely that within the experience of a particular disability insights of unique value often emerge. Wilson’s point is not to privilege disability, but rather to point to the ways in which notions of wholeness and health can be interrogated as creating, in a sense, a false relation to what I will call for want of a better phrase "the reality of life."

A bumper sticker I have always hated but have slowly come to appreciate says “We will all be disabled one day,” and it strikes me that one of the powers of disability is that by its very nature and role within the larger society, it often forces a critique of the entire society. In his essay “Disability in Theory: From Social Constructionism to the New Realism of the Body,” Tobin Siebers notes that often the disabled body is discussed as if incorporating it into the so-called mainstream were just a question of shifting attitudes, but that, in fact, often disabled people require “types of care” for their bodies that so-called ‘normal-bodied” people don’t. While this can be made to fit formulations of the disabled as disadvantaged or burdensome, from a disability perspective, it can lead to a critique about how we set up our society, what we consider community. Why do we automatically view someone who can't take care of him or herself without some help as a burden?

In Constructing Normalcy Davis tracks how in the post-Enlightenment period, and in tandem with the development of the “science of statistics,” certain people become defined as disabled or deviant as standards of “normal” were reified. In my literature of disability class, as we moved from Sophocles to more modern works, what was fascinating was the degree to which many of the books we read mounted substantive critiques of mainstream society as a whole—focusing often on issues that did not apparently have to do with disability per se.

One such work was Precious Bane, by Mary Webb. Set in rural England during the industrial revolution, the novel concerns a hare-lipped girl living on a small family farm. Prue Sarn, due to her “precious bane,” is initially presented as the exile within the story—the girl who will never find a husband or take on a full role in her small rural settlement. When her father dies, her brother, Gideon, persuades her to work for him to improve the family fortunes. Through the events of the novel, however, during which Gideon becomes ever more obsessed with getting ahead, Mary Webb suggests that the handsome Gideon is the one who is truly deformed; unable to experience life as anything but a machine—a method of production. While Prue's sense of the land they farm is engaged and sensual, his is clinical—he views it as a resource to be stripped. The novel thus positions itself equally as the story of a disabled heroine and a far-ranging analysis of modern industrial society and notions of progress.

This is a theme—the idea that normal "standards' of judgment often reduce life and the people who live it to machines, computers, pure material, with a subsequent devaluation of lived experience and threat of automization—that appeared in other works we read from Toni Morrison’s Sula to Lucy Grealy’s memoir Autobiography of a Face. In such works the disabled perspective often involves an experiential and even spiritual vision of life as set against a mechanistic or materialist one. For example, in Autobiography of a Face, Grealy describes herself as afflicted less by her experience of jaw cancer, her illness itself, than by the perceptions of her in regards to social standards of "beauty." A kind of spiritual autobiography, the work traces her efforts to conceptualize beauty as experience and being rather than surface or just an aspect of the body.

The chimera of beauty—the Western ideal of beauty—is perhaps one of the most persistent and hardest to discuss in the pedagogy of disability. I still remember my shock when as a college student I first encountered the section “On Beauty and Deformity” in Enlightenment philosopher David Hume’s “A Treatise on Human Nature,” and understood he was arguing that the surface—the dimensional aspect of beauty—must reflect some fundamental and rightful “essence.” I also remember being profoundly moved when I read Toni Morrison’s afterword (written two decades later) to her first novel The Bluest Eye in which she states that she wrote the novel to make beauty “a verb rather than a noun,” underlining the destructive force of beauty in passing judgment on those who exhibit difference. On the topic of beauty, I find the place where my experience and my notions of the pedagogy of disability intersect most viscerally. Like most patients with XLH, my childhood was a long round of braces, orthopedic shoes, fixators and surgical interventions. While much of this was overtly functional, it had often simultaneously the quality of a religious pilgrimage. Many of the interventions did not work but were somehow necessary in the quest to replace my ‘deformed’ body with a more ‘acceptable’ or even ‘beautiful’ model. It strikes me that in terms of disability studies, the effort to reconfigure such notions of beauty as primarily dimensional and to challenge, too, the often unspoken primacy of beauty as an ideal within the humanities are among our most foundational tasks. The problem for the disabled is not so much “arriving at self acceptance,” as questioning the grounds of such acceptance or valuation of our actual bodies.

For my students, the more our discussions in class shifted to looking at “what is normal,” the more able they were to be honest and thoughtful about difference. Interestingly, what emerged for virtually every member of the class, was the sense they had of the damage that such notions of beauty, wholeness, normalcy, and even health had inflicted on them. One said: “I think the truth is none of us feel normal no matter how we look on the surface.”

Even more dramatic in terms of forcing the class to interrogate constructions of normalcy—and in particular of “the body beautiful”—was Jim Ferris’s autobiographical poetry collection The Hospital Poems. Describing his experiences as crippled child in need of correction, he focuses on the hospital—strange and melancholy homeland of so many of us disabled. For most of my students, used to the hegemonic construction of doctors as healers and hospitals as institutions of salvation, Ferris’s portrayal of the institution from a disability perspective was shocking and disorienting. In one poem, “From the Surgeons: Drs. Sofield, Louis, Hark, Alfini, Millar, Baehr, Bevan-Thomas, Tsatos, Ericson, and Brennan,” Ferris tracks his progress—or rather lack of progress—through a series of corrective surgeries. The poem concludes:

10-30-20. Progress Notes. Final discharge. The patient is essentially unchanged since last visit. His leg lengths measured to the heel on the right measures 101 and 86 on the left from the anterior superior disc spine. He has occasional episodes of pain. He is still wearing the long leg brace with the high lift below and there was no indication on the mother’s part that she plans on having anything done in the near future.

The class had to read to the poem six times before they were even able to absorb it on a simple informational level.

One student said in response to the question: What changed for him?

“There was no improvement, but that doesn’t make sense. I mean why would they do all that if there is no improvement?”

There was a long silence, until a second student piped up: “Because if you're disabled they need to fix you.”

“To revise you,” someone else said.

No one said anything for a moment, but the room crackled with the uncanny and somehow liberating energy of new vistas, new ways of looking at the world abruptly laid bare.


Sheila Black was born with X-Linked Hypophosphatemia (XLH), more commonly known as Vitamin D Resistant Rickets. She is the author of a full-length poetry collection, House of Bone (CustomWords Press, 2007) and a chapbook How to be a Maquiladora (Main Street Rag Publishing, 2007). A second full-length collection Love/Iraq is forthcoming from CustomWords Press in 2009. She is currently the Visiting Poet at New Mexico State University in Las Cruces, New Mexico.