Editors' note: What happens when a penchant for abstract theorizing runs head on, splash, splat into lived experience? An academic in the field of Disability Studies, and the adoptive father of a child with autism, reflects on the emergence of his own disability.

I remember the orthopedist's exact words: "You're going to need a total hip. Actually, you're going to need two." I looked at him blankly. Total hip? I knew that he wasn't talking about the kind of makeover I'd received in graduate school at the hands of cooler colleagues–those Neiman Marxists, shall we say, who believed that an academic radical ought to look the part–but that's precisely what came to mind. If graduate work in cultural studies had done anything, it had exaggerated a natural proclivity for defensive wit: the turning of a phrase so as to distance myself from an unpleasant reality. No, the orthopedist was talking about joint replacements–two of them, in fact. "Mr. Savarese," he said, "you have some sort of arthritic disorder and you need to see a rheumatologist immediately." Then, he was out the door, rushing to the next patient, leaving me in my underwear to absorb the news.

I had made an appointment to discuss what I was certain was a minor, if nagging groin injury, an injury that hadn't even kept me off of the tennis court. How could I have an arthritic disorder? What, for that matter, was an arthritic disorder? If I really needed total hip replacements, why wasn't I in more pain? Question after question I batted against the examining room mirror–my backboard–only to have each return at a furious pace, unanswered, terrifying. The harder I swung the more I couldn't keep up with myself.

I was 37 years old, a new assistant professor of American literature at a small liberal arts college in the Midwest. I was in excellent shape, playing tennis at a very competitive level. Only a few years earlier, I had been ranked as high as #3 in the state of Florida in the men's 25 and over division, as high as 13 nationally. While in graduate school at the University of Florida, I had served as the practice partner for three N.C.A.A. women's champions, one of whom is still having a terrific career as a pro, remaining consistently in the top 20 in the world in singles and the top-one or two in doubles. (She's presently playing with the great Martina Navratilova on her latest comeback bid.) And so, it seemed inconceivable that my tennis days were over and that I would have to have an operation that I so associated with the old and enfeebled.

Even then, the irony of my panicked response did not escape me. No stranger to disability, I had spent the previous five or six years working in the field of Disability Studies, quick to mobilize social constructionist arguments in an attempt to combat the tyranny of the norm. By demonstrating the way that physiological difference had been historically construed--that is, produced--as abnormal, pathological, I had sought to imagine a future in which people with disabilities might not only be fully included in public life but actually celebrated for their difference.

A late arrival on the academic scene, Disability Studies borrowed from ethnic studies an emphasis on the way that bodily difference has been perceived by dominant social groups, understanding that act of perception as profoundly political and as having potentially devastating consequences. Witness the fate of African-Americans in 18th- and 19th-century America or the Jews in twentieth-century Germany. That kind of persecution requires a pernicious coding of difference; there is nothing, in other words, inherently animal-like or less than human (as alleged) about either group. Analogously, there is nothing less than human about people with disabilities, and scholars have similarly set out to demonstrate the operation of violence against them as well. Take, for example, the "mentally retarded." As James Trent (1994) reports in his aptly titled book, Inventing the Feeble Mind, only in a society that so fetishizes self-reliance and economic productivity could cognitive deficiency become a crisis. And only in a society so conflicted about issues of sexuality, could the "feeble minded" be imagined as sexually deviant, predatory, and thus in need of corrective measures such as sterilization and incarceration.

Of course, the rubric of disability is large, and there are less extreme examples. Distinguishing between, say, the physiology of paralysis and the social meaning of that condition, scholars have noted how unnecessarily harsh and restrictive the experience of paralysis has been, until recently, in this country. Moreover, they've pointed out how frequently our popular culture has used physical disability as a sign, a symbol, of a character's immorality and corruption, thus allowing people to imagine an innate connection between these phenomena. (Think of the villains in sci-fi thrillers who invariably embody their evil intentions.) Whatever the disability, the goal of scholars has been roughly the same: to undo the damage of oppressive representations by exposing their human origin and to begin the work of envisioning new, more positive representations.

Ultimately, the goal has been, as with other civil rights movements, a kind of radical empowerment and celebration. What, for instance, in the past would have been considered a disaster (the loss of the use of one's legs) might now be considered a mere transformation: something even to be extolled. Not the injury itself but the new reality of, say, person and wheelchair negotiating the world. Part of the larger project of postmodernism--that intellectual buzz word signifying, among other things, the collapse of all privileged binaries (white/black, man/woman, gay/straight, able/disabled, etc.), and the failure of any concept of the natural--Disability Studies has gone so far as to insist on the renunciation of the bodily norm altogether. In doing so, it has tested the very limits of the ethnic studies model, for while few would speak of the superiority of the white body, nearly everyone would speak of the superiority of the healthy heart or leg. Should doctors give up diagnostic value judgments in the name of that more neutral notion of difference? "Oh, that's a beautiful case of left ventricular dystrophy." The idea is astonishing, and it makes an important point about diversity, even as it is wildly impractical and hyperbolic. Even, I should add, as it does little to make me feel better about my arthritis.

In an essay that strives to question the value of neat, academic arguments, I probably ought to take more care with my language, neither blithely presuming familiarity with this specialized jargon nor arrogantly presuming this jargon's mastery of the problem. Indeed, the ease with which I was able to spout this jargon belied its impotence in the face of my diagnosis. One of the things I want to suggest is that there is a significant gap between progressive intellectual knowledge about disability and the often depressing psychological reality of it. The latter has remained stubbornly immune to the interventions of the former–in part because these interventions have been relentlessly theoretical. It's important to engage with these arguments, for in the long run they contribute to social change by opening up a space for thinking differently about disability. But they also overestimate their immediate positive effects, and sometimes they do so with an alienating arrogance. I don't wish to be anti-intellectual; rather, I wish to challenge the intellect's imperial authority.

And so, at the time of my diagnosis, I was comfortably ensconced in the field of Disability Studies. What is more, my own life was filled with disabled friends and relatives, relationships that no doubt fueled my academic interest in the subject and my activist mentality. My wife's uncle had suffered a stroke that left him paralyzed on one side of his body and unable to speak. A doctor friend of ours from Florida had been rendered a quadriplegic in a car accident not six months after she had been married. The son of my undergraduate advisor, a writer with whom I remain very close, had similarly been rendered a quadriplegic in an equestrian accident. The son, a famous movie actor, was frequently on television talking about spinal cord injuries. The father himself contracted polio as a child and has difficulty walking due to complications from late-onset diabetes. His wife is deaf.

No one, however, had brought home to me the experience of disability like my son, who has autism and who when my wife and I adopted him at the age of five-and-a half (some three years before my diagnosis) was still in diapers, almost entirely uncommunicative, and who carried with him the label of "profound mental retardation." By practicing what Doug Biklen (1997) has termed the "presumption of competence," we had fought to include our son in regular schools and worked to develop alternative means of communication, including that sometimes maligned, but now resurgent, form of accommodation for the non-speaking called "facilitated communication" (p. 187).^[1] Committed to the possibility of growth, however modest, and believing in his fundamental human worth, we had set out to nurture this badly abused and neglected boy. In truth, we'd fallen in love with him and seemed really to be following his lead--as though he had decided to adopt us. (My wife had worked professionally with the boy's birth mother, trying to instruct her on how to parent a child with autism, and when the boy was taken from her custody by the State of Florida and the woman later disappeared, we commenced the arduous process of trying to adopt him.)

In the seven years now that he has been with us, our son has progressed to the point of receiving all "A"s in a regular seventh-grade curriculum. He uses a computer to speak, and his lyrical way with language suggests extraordinary ability as a writer. He is completely aware of his difference, which he has struggled to accept, in the same breath declaring such things as "Autism sucks" and "I have a great mind. I see things you don't see." The older he has gotten, the more invested he has become in appearing "normal," a word he uses obsessively. "You treat me just like the other kids," he tells his favorite teacher. "You like my normal mind." My wife and I have wanted him to understand that we love him for who he is–autism and all. I have gone even further, telling him I have no desire for him to be anything but autistic. I don't mind that he flaps his arms when over-stimulated.

Accordingly, I ask: who better, who more prepared, than I to have been diagnosed with a disability, armed as I was with academic arguments and something like personal experience? I knew just what to tell myself; indeed, I could serve, I thought sarcastically, as my own therapist, thereby saving money and expediting the process of emotional healing. Well, those arguments and that experience proved insufficient. Put simply, nothing could have prepared me for my own disability. A bit like the liberal who decries the essential dignity of the poor while living in a comfortable home, I found the actual experience of disability unbearable. My disability depressed me; the pain, as my condition worsened, took over my life. How, frankly, could severe generalized osteoarthritis, a condition resulting in the rapid destruction of cartilage in the hips, knees and neck, be celebrated like blackness, say, or homosexuality? While I understood the salutary effect of representing disability as a kind of ethnicity, the notion fell flat in the face of lived life. No amount of pomo theorizing could finesse the need for–indeed, the agony of-- multiple surgeries. (In addition to the two hip replacements, it became clear that I would eventually have to replace my knees as well, and undergo a laminectamy for my neck, a dreadful procedure requiring a long rehabilitation.) A colleague joked that I would soon be a cyborg, my scars evidence of a new nature and even a new art. But I didn't like my more limited, if more decorative, body and the identity that was emerging from it. And I derived no pleasure from subversive, cyborgian fantasies.^[2]

Before my diagnosis, I had published an article (2001) in which I chided a disabled writer for refusing to move forward, for refusing to forge a positive self-image. I was in my activist mode, championing an unambiguous empowerment agenda: if black was beautiful, then disabled was–disabled must be--divine. The writer had suffered sexual abuse as a child, and in his book he imaginatively conflated the abuse with being disabled, believing the two things somehow intrinsically, causally, linked. The post-traumatic stress that the memoir recounted ended up serving, I argued, as a figure for disability generally, as if having a disability were necessarily traumatizing: an injury from which one might never recover. By the very logic of his book, the author was stuck: there could be no recovery from disability so long as recovery was needed. His very conceit had trapped him. Similarly, back when my doctor friend had become a quadriplegic and seemed stubbornly to cling to what she had lost, refusing for several years even to plan for another career, I had taken it upon myself to lecture her on her negative attitude. While I might have been correct in pointing out the absence of viable alternatives to moving forward, I didn't appreciate the psychology of disability, the depression, the self-loathing, the relative powerlessness of any program of encouragement.

Doubtless, living in a culture that glorifies youthful vitality contributes to a disabled person's unproductive feelings about himself. It's only that much tougher for him (or for her) to pull off the body shape we all seem to hold up as the norm but know paradoxically few can achieve. Can severe generalized osteoarthritis be sexy? My wife thinks so, but I have my doubts. Sexy or not, it affects the act itself, rendering many positions untenable. Since my diagnosis, I've developed something of a belly, unable to exercise as I used to. I feel less masculine now, less virile, less invulnerable. I do not like my body. Does it help to be able to write, "Ours is a merciless economy of the eye"? Perhaps, but in the end I fear that such rational mastery is like the hapless detective who keeps following, and losing, his stealthy nemesis. Which way did he go? I ask myself.

This academic radical now has to wear shoes without laces and loose fitting pants. It's hard to be hip in footwear for the enfeebled--unless you're a fan of clogs. (I'm not, though I wear them.) When I first started to limp, people felt free to ask me what was wrong and to push beyond any politely evasive answer I gave them. As word got out that I was suffering from a disease and not an athletic injury, I quickly became the object of others' pity, "What a shame," one person remarked, "You were such a good tennis player." (A few years earlier I'd encountered an especially egregious version of this logic when a stranger at a restaurant noted my son's striking good looks and deemed them "a waste.") When my neck got so bad that I had to wear a collar, the stares and intrusive remarks only worsened. I dreaded going to class and to faculty meetings–anywhere I might catch someone looking at me fearfully or, worse, gratefully. "Better him than me. Much better him than me," their faces seemed to say.

Countless scholars have commented on how disability reminds people of their own mortality; it forces them to think about just how vulnerable they are to forces beyond their control. Because our capitalist culture seems so committed to repressing this fact, offering up the myth of endless, purchaseable rejuvenation, disability only makes people that much more uncomfortable. So long as I was willing to play the role of valiant survivor, affably accepting my fate and triumphing over my limitations, I was a welcome addition to social life. But such a performance exacts a toll. As much as I find whining unattractive, even unacceptable, there are days where I do not have the energy to be positive. There are days, days when the pain is so constant and intense, that I want literally to scream.

And yet, for all of the cultural factors that make the experience of disability far more unpleasant than it has to be, far more difficult for an individual to develop a healthy sense of self, there is a physical reality, itself conditioned by cultural factors, which social constructionists often underplay. Recently in the field of Disability Studies, the pendulum has started to swing back to a greater appreciation of this physical reality, however off-putting and painful. Tobin Seibers (2001) has termed this movement the "new realism of the body," and it can be thought of as eschewing the compulsory cheerfulness and abstraction of the strict social constructionist approach.^[3] Returning to the debate issues of lived particularity, a given person's pain and feelings of loss, it seeks not to overturn the insights that make possible the politicization of disability, but to complicate them–even at the expense of engendering a new wave of prejudice. The last thing any disabled person would want is for someone to say, "Yes, that disability is as awful and as restricting as I thought it was."^[4] And yet, that is, at least in part, precisely what the new realism wants, understood, of course, as a corrective to too much easy theorizing.

Two examples. The nurse who attended to me in the hospital after my left hip was replaced had undergone gastric bypass surgery a few years earlier. She'd found the experience of being massively overweight unbearable and didn't, of course, pine for the nearly two hundred additional pounds she'd been carrying around with her once they were gone. When considering the woman's decision to have this rather draconian procedure, it would be intellectually irresponsible to ignore the country's obsession with being thin, but it would be equally irresponsible to ignore the physical reality of obesity, particularly the health complications. While my own investment in an athletic persona can be explained–that is, critiqued--in any number of culturally incisive ways, I want you to know that I desperately miss gliding around a tennis court, watching the points unfold, scrambling to retrieve an almost certain winner. I found that movement extremely pleasurable and I experience its absence, its impossibility, as a devastating blow. (That blow, one might say, is arthritis: a physio-cultural phenomenon with psychological effects, one in which bone-on-bone pain is never just that.) So, however masculinist my former identity, I mourn its passing. Testing the limits of conventional cultural studies, the new realism thus calls for an understanding of embodiment that can account for the forces of nurture and nature dynamically.

As noted above, the danger with too much realism is that it might encourage people to view disability pejoratively–with devastating effects. God knows we don't need to make able-bodied people more anxious about disability, and we certainly don't need to make people with disabilities feel worse about themselves. Depression is already an enormous problem. As Sharon Snyder and David Mitchell (2001) point out, the field has worked tirelessly to "disassociate disability from its mooring in medical cultures and institutions" (p. 368). It has worked tirelessly to de-pathologize this kind of difference. But there has to be a way of being both celebratory and realistic. In this regard, I've learned much from my son, who has struggled to achieve moments of self-affirmation. Consider this exercise in autobiography, produced in the fifth grade: the "scary things" to which he refers include being abandoned and then repeatedly raped and beaten in foster care.^[5] I reproduce the passage exactly, typos and all:

My name is D.J. Savarese. i'm glad I'm me. I am 11 years old. I'm proud to be in school. I want to be successful. I can do alot of things. I know i can be focused sometimes i forget. I hope you understand the way i am I wish I could fky. I like to go skating. I hear all that you tell me. I want to change scarey things. I play with my friends. I smile when I see miss innis in the morning. I love my mom and dad. I see what i want to. I believe in people who want to love me. I am thankful for my family. I will try to smaile at everyone. I enjoy being at school. I dream about life. I wonder what i will become of myself. I need to be focused. I wear buttned up shirts. I'm glad I'm D.J.

Like the writer about whom I had written the article, my son also conflated disability with sexual abuse; in his case the attacker had called him "fucking freaky" while perpetrating the act, in a sense compelling DJ to understand himself through this lens. We wouldn't even find out about the abuse until he began to communicate with a computer–long after he'd joined our family and long after I'd published the article on that writer. Only then did I understand just how devastating and intractable, how perversely realistic, was the rape-disability confluence. Watching DJ try to disentangle the attack from his autism and then his autism from the myriad ways he'd been made fun of for being different has been nothing short of amazing. "Thank you for not thinking I'm freaky," he told me recently after a therapy session.

Against all odds, he has found a way of moving forward that manages to acknowledge the hardships of disability. Yes, autism still "sucks" a good deal of the time–DJ, for example, desperately wants to speak on his own--but it also seems to have authorized an exquisite sensibility. What 12-year-old could begin a poem entitled "Alaska" this way: "Hours of light like heat hibernate. Great icebergs hear the cries of the hurt"? This hurt, however, hasn't stopped him from becoming a miniature activist. At school recently he intervened on behalf of a non-speaking girl stuck in special ed, saying, "She can do more." Unencumbered by academic discourse and abstract theories, though perhaps nonetheless influenced by them, DJ has accomplished that difficult balancing act to which I have alluded: being both celebratory and realistic. I'll never forget what he said to me the day after I returned home from my hip replacement surgery, feeling something of a freak myself. "Dad, you hurt my feelings," he typed on the computer. "How did I do that?" I asked, confused. "You didn't buy me any braces [his word for crutches]." "Why do you need braces, DJ?" "You know," he replied. "I want to be just like you."

I had to fight back tears. My 12-year-old son was trying to make me feel better about my own disability. He was in a sense choosing it for himself, establishing a common ground of suffering and resolve, a ground finally much larger than any particular affliction. Five months later, he'd establish that common ground once again when his 8-month-old cousin Charlie died of a brain tumor, presenting this short letter to Charlie's devastated parents. "Dear Uncle James and Aunt Eileen, Charlie is free. you dream being with him. It is so sad to be without him. You love him. he was so cute. You pleased him when you smiled. I love you. Greaf [grief] is not easy." The last lines are radiantly simple, the misspelling a touch of genius, as if to underscore just how difficult grief is. He understood their pain, this boy who had lost everything. Might thinking about disability retain its political edge while being attentive to the experience of living in the world? Might it not try too quickly to master that experience? That's my new life's joint resolution.

References

Biklen, D., Cardinal, D. (1997). Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy. New York: Columbia University Press.

Fries, K. (Ed.). (1997). Staring Back: The Disability experience from the Inside Out. New York: Plume.

Haraway, D. (1991). Simians, Cyborgs, and Women: The Reinvention of Nature. New York: Routledge.

Jeffreys, M. (2002). The Visible Cripple (Scars and Other Disfiguring Displays Included). In S. Snyder, B. Brueggemann, R. Garland-Thomson (Eds.). Disability Studies: Enabling the Humanities (31-39). New York: MLA Press.

Savarese, R.J. (2001). The Memoir Wars: Identity Politics, Recovered Memory, And Kenny Fries' Body, Remember. Prose Studies, 24, 93-124.

Siebers, T. (2001). Disability in Theory: From Social Constructionism to the New Realism of the Body. American Literary History, 13.4, 737-754.

Snyder, S., & Mitchell, D. (2001). Re-engaging the Body: Disability Studies and the Resistance to Embodiment. Public Culture, 13.3, 367-389.

Trent, J. (1994). Inventing the Feeble Mind. Berkeley: University of California Press.

Endnotes

¹ This isn't the place to discuss the FC controversy. Let me instead elaborate briefly on the technique's resurgence. In light of the recent Academy Award-nominated short documentary, Autism Is A World, which CNN co-produced, and articles on other FC users who have learned how to type independently, people are beginning to take a second look at the technique. Margaret Bauman, for example, a prominent pediatric neurologist at Harvard, who appears in the CNN documentary, has testified to FC's indisputable success in some non-speaking people with autism. See the extensive article, in which Baumann is quoted, in the February 28, 2005 edition of Newsweek.
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² The work of Donna Haraway, for example, comes to mind. See Simians, Cyborgs, and Women: The Reinvention of Nature. New York; Routledge, 1991.
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³ The punning title of Siebers' (2001) essay–"Disability in Theory"–succinctly captures the problem with social constructionist readings of disability: the experience of physicality drops out. In the recent MLA collection, Disability Studies: Enabling the Humanities, Mark Jeffreys makes a similar argument, concluding that we must not give in to either a strict biological or cultural determinism. See Jeffreys, M. (2002). The Visible Cripple (Scars and Other Disfiguring Displays Included). In S. Snyder, B. Brueggemann, R. Garland-Thomson (Eds.), Disability Studies: Enabling the Humanities (31-39). New York: MLA press. See also Snyder, S., Mitchell, D. (2001). Re-engaging the Body: Disability Studies and the Resistance to Embodiment. Public Culture, 13.3, 367-389.
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⁴ Kenny Fries, in the introduction to his anthology, Staring Back: The Disability Experience from the Inside Out, cites Anne Finger's response to a colleague who misinterpreted her public confession of hardship: "It is my old fear come true: That if you talk about the pain, people will say, "See, it isn't worth it. You would be better off dead." (2). Fries goes on to comment, "After knowing what I had gone through how could [my friends] believe there was so much more to living with my disability than pain" (2). See Fries, K. (1997). Introduction. In K. Fries (Ed.), Staring Back: The Disability Experience from the Inside Out. New York: Plume.
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⁵ Issues of privacy obviously come into play in the decision to publish this piece. As part of my son's recovery, he has decided to speak openly about what happened to him in foster care, believing that other kids with disabilities need loving families and special protection from potential predators. Thus, with his permission, I have gone ahead and published the essay. I deal with this issue at greater length in the introduction to my forthcoming book, Reasonable People: A Memoir of Family (Other Press 2007). The book traces DJ's development as a person who can represent himself; indeed, the final chapter is entirely his.
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