Disability Narratives

Ask most people living with a disability to name their least favorite question and “what happened to you?” will be high on the list. “Wanting to educate yourself about disability and learn more is ...

Ask most people living with a disability to name their least favorite question and “what happened to you?” will be high on the list. “Wanting to educate yourself about disability and learn more is great, but there’s a time and a place,” writes Erin Tatum in Everyday Feminism magazine. “You should have enough sensibility and tact to know that someone who you’ve been acquainted with for all of ten minutes probably isn’t the ideal springboard for all of your burning questions.”1

There is an etiquette to asking. But the fact remains that disability raises burning questions about origins and causes, whether or not they are spoken out loud. “Disability demands a story,” Michael Bérubé puts it succinctly.2 Where an able body may appear blandly ahistorical, disabled bodies cry out for a narrative to explain when and how they came to be.

Christina Crosby gets all of that out of the way in the first sentences of her riveting memoir, A Body, Undone: Living On after Great Pain. She opens with the facts: “On October 1, 2003, I caught a branch in the spokes of the front wheel of my bicycle, and hurtled toward the pavement.” The following sentences describe the devastating impact on her body: “My chin took the full force of the blow, which smashed my face and broke the fifth and sixth cervical vertebrae in my neck. The broken bone scraped my spinal cord, and in an instant I was paralyzed.” Crosby’s voice is straightforward, clinical as she reports smashing, breaking, and scraping that she has no memory of experiencing but that left her forever changed. She will retrace these details again and again throughout the narrative, a melancholic reminder of how easily and instantaneously the line between ability and disability may be crossed.

Before the accident, Christina Crosby enjoyed her career as an English professor at Wesleyan University, where she was a popular teacher, productive scholar, and campus leader. She loved the life of the mind, but she also loved to drink and socialize. She delighted in physical activity and took pride in her body’s strength, stamina, and appearance. She had problems with gas and she loved to fuck, her word of choice to describe the sexual life she shares with her lover, Janet. “The idea of fucking still makes me happy,” she writes. “Its Anglo-Saxon frankness is closer, I think, to the pleasures of sex than the anodyne phrase ‘making love,’ and the possessive register of ‘having sex’ is all wrong.”

Words matter to Crosby, who maintains the exacting attention to language of one who has devoted her life to reading and writing. But writing of fucking is not just about using language that’s arresting and precise. It also typifies a powerful strain of ambivalence that runs through the memoir. On the one hand, using the word “fuck” allows Crosby to assert her connection to a past self that has “always loved fucking, ever since I discovered love and imperative desire” in the 10th grade. Crosby insists on the ongoing vitality of her desire for Janet, the enlivening persistence of sex in their relationship. On the other hand, fucking is a painful reminder of all she has lost. “For me, fucking is so changed from what it was that, try as I may, I cannot reconcile myself to my losses,” she writes. Fucking reminds Crosby that she is alive, and also of the diminished pleasures of the life she currently lives.

“How I miss the way sex used to feel!” Crosby exclaims. Her lament is notable for exposing sentiments that are often taboo in disability memoir. Advocates decry the tendency of able-bodied people to think of disability in terms of suffering, loss, and tragedy. For example, Deaf activists H-Dirksen Bauman and Joseph Murray argue for redefining “hearing loss” in terms of “deaf gain.”3 In keeping with this position, life writing by authors such as Simi Linton, Harriet McBryde Johnson, and John Hockenberry affirms not just that living with a disability can have meaning and value, but also that it can entail unexpected benefits. Narratives about acquired disability typically trace a path from despair to acceptance and even growth. Crosby traces this narrative arc back to the realist consensus that grew out of Renaissance humanism and the Anglo-European Enlightenment. The belief in a world that is “expansive, comprehensible, and rationally ordered” gave rise to narratives that chart a movement from chaos and suffering to insight and personal growth.

From the perspective of disability advocacy, there are clear advantages to a “disability gain” perspective. It provides an important corrective to ableist narratives that see disability only in terms of lack, limitation, and tragic suffering. But is something amiss when people with disabilities resist talking about what they have lost? In his 2014 book, The Disarticulate: Language, Disability, and the Narratives of Modernity, James Berger probes disability studies’ reluctance to acknowledge trauma. “Disability studies has not yet conceived a way of thinking the negative,” Berger writes.4 Disability studies has emphasized the social barriers arising from prejudice and inaccessible spaces, but impairment itself, Berger also insists, may be a source of trauma, pain, and loss.

Crosby confronts her trauma, and the ongoing experience of loss, head-on. She makes no attempt to deny the lasting physical pain resulting from her injuries, the longing for her formerly healthy body, or the frustration, loneliness, and depression arising from her current condition.

Crosby recognizes how fortunate she is to be a tenured professor whose “mind was intact” after such a severe accident. A reduced teaching load allows her to continue her work as a teacher and a scholar, a job that does not depend on possession of an able body. Even under these ideal conditions Crosby refuses the false separation of body and mind, often using the single word “bodymind” to suggest their imbrication. Her mind is part of the body that was irrevocably smashed, broken, and scraped.

disability raises burning questions about origins and causes, whether or not they are spoken out loud.

Take, for example, the pleasure of collegiality Crosby enjoyed before the accident, when her work as a scholar was supplemented by “a social life of drinking, dinners, and parties.” After evening lectures, she particularly enjoyed parties at the home of her colleague Betsy, where generous amounts of alcohol and well-prepared food made for raucous evenings. Crosby is grateful that she can continue to attend lectures and parties, even after the accident. But the very fact that she can soon underscores what she has lost. When she arrives at Betsy’s house one evening, she has to call a friend on her cellphone to help her get inside. Extendable ramps must be dragged from Crosby’s van so that she can roll up the stairs. Having been bumped over the threshold, Crosby finds the living room is too crowded for her to go any further. There she remains, parked in the vestibule, aware of all she is missing just beyond. Of course, friends bring her food, drink, and company, but Crosby’s primary sensation is that the party itself—the lively, free-flowing sociality of the evening—remains inaccessible. “I left after about an hour and went home sober and sad,” she writes.

If regret and longing are the dominant affective registers of A Body, Undone, Crosby also provides an unsparingly candid account of fear. Crosby rejects the familiar pattern of disability memoirs, which tend to treat fear and distress as a stage to be overcome as the narrative progresses “toward a satisfying conclusion of lessons learned and life recalibrated to accommodate, even celebrate, a new way of being in the world.” She can see no such satisfying course for her own journey. “I can’t resolve the intractable difficulties of disabling incapacity, any more than I can suggest that everything will be (more or less) okay.” Crosby self-consciously adopts the mode of horror to portray these contradictions. “I’m not writing a horror story, I’m living one,” is how she describes the awareness of her compromised condition and the terror of aging in an already vulnerable body. “I fear living with interminable pain, both neuropathic and emotional, and I fear interminable grief,” she writes. “It colors the world and is just too hard sometimes to bear. I fear not death, but living.”

One generic convention of horror skillfully deployed by Crosby is the figure of the double. Think of the creepy twin gynecologists played by Jeremy Irons in David Cronenberg’s Dead Ringers or the gorgeous Judy and Madeleine (both played by Kim Novak), who obsess James Stewart in Hitchcock’s Vertigo. In A Body, Undone, a series of doubles calls attention to the precarity of all bodies, the “deeply affronted” sense of bodily integrity Crosby experiences after the accident, and the awareness of interdependency introduced by her changed circumstances. There is the story of Crosby’s vibrantly healthy friend John, who introduces her to the pleasures of cycling for sport, only to be felled by cancer in his 50s. There is the doubleness of her femme-y butch / butch-y femme coupling with Janet. Most importantly, there is her uncanny relationship to her brother, Jeff.

<i>Sombra</i>. Photograph courtesy of Marta Diarra / Flickr

Sombra. Photograph courtesy of Marta Diarra / Flickr

Jeff died at age 57, almost completely paralyzed from the multiple sclerosis that afflicted him since his 20s. Throughout their youth, Crosby enjoyed a loving but competitive and fiercely physical closeness to Jeff, who was her only sibling and just over a year her senior. Through grade school, Crosby harbored the illusion that she and Jeff were equal in all things. Aware that girls were considered inferior to boys, Crosby identified with boyishness and the privilege it entailed. One day, exasperated by the siblings’ endless quarreling and roughhousing, Crosby’s father enjoins them to “fight it out.” Crosby recalls her utter humiliation when Jeff emerges victorious from a violent and protracted struggle. Over time, what she comes to think of as “The Fight” assumes deep symbolic significance as the moment when her father “established the (supposed) universal difference of a simple hierarchical binary, masculine over feminine, as it expresses the (supposed) foundational difference of sex.”

Those seemingly intractable hierarchies of sex and gender are defeated by Jeff’s illness. As his body declines, Crosby’s glowing health stands out in ever-sharpening relief. But only after the accident does she truly understand the extent of Jeff’s dependency. When Jeff visits her bedside in his wheelchair, Crosby contemplates, with a dawning sense of horror, how her “fantasy of being Jeff’s twin had been finally, malevolently realized.” The extent of their twinning is vividly illustrated in Crosby’s account of the “bowel program” each must endure. Moving one’s bowels is a regular, universal, and absolutely essential aspect of all animal life. But it is also highly symbolic. Dominion over the bowels is among our most primary achievements, signaling a child’s entry into the adult world of privacy, cleanliness, and self-sufficiency. Losing that control—a plight Crosby comes to share with her brother—is also an affront to her sense of dignity and personhood.

Painful as it is to recognize her newfound kinship with Jeff, it is even more wrenching for Crosby to realize their differences. As she recovers from the accident, Jeff continues to decline. His bowel program signals progressive loss whereas hers signals a miserable but necessary aspect of persistence after grave injury. After Jeff dies, Crosby acknowledges that his memory enables her to endure, but with the sad recognition that “I am not Jeff’s twin. I don’t even resemble him as much as I had thought. That revelation helps me to see him more as he was—and is yet another loss.”

Crosby seeks to make sense of a transformation that in many ways defies meaning, understanding, and belief.

Running through the book is a powerful recognition of interdependence. Repeatedly, Crosby acknowledges her debt to others. She does so to recognize the compassion and generosity of the community that emerged in the wake of her accident, but also as an aspect of the book’s ethical stance. Crosby reflects on her desire to lead a “complexly relational life and [her] wish to help others.” In addition to her ambivalent ties to her biological family, she develops a “far-flung network of elective affinities.” The accident stretches the bounds of relational life to include the paid caregivers who enable Crosby to carry on with a modicum of independence. During her extended hospitalization, she meets Donna, a beloved caregiver who agrees to work for Crosby part-time once she returns home. Donna, who lost her mother around the time of Crosby’s accident, becomes yet another double as the two women share intimate experiences of mourning, storytelling, and bodily care.

Crosby is also powerfully aware of her differences from Donna, who is a Pentecostal Protestant and single mother. Through Donna, Crosby develops intimate knowledge of “how bitterly, sometimes desperately, hard it is to be working poor.” Like Donna, the majority of Certified Nursing Assistants are women of color. Their work is low-paying, stressful, and physically grueling. Donna, who is in her early 40s, suffers from a painful neck injury, arthritic knee, and frequent headaches. In this, she exemplifies a population that is prone to “slow death.” Their suffering makes a mockery of Michelle Obama’s chipper promotion of a healthy lifestyle involving exercise and wholesome food. It is no wonder that the working poor smoke, eat fried foods, and drink soda, Crosby writes understandingly, as these cheap pleasures provide an opportunity to do “what their bodies desire in an otherwise dreary and repetitive day.”

Attuned as she is to the structural injustice that underlies Donna’s plight, Crosby is also aware of the limits to their relationship. Donna necessarily has intimate knowledge of Crosby’s private life, while her life remains, for Crosby, “in many regards, unknown to me and unknowable.” Aware of Donna’s financial precarity, Crosby and Janet offer to help if she finds herself in need. But offering to help provokes further anxieties. “What if Janet or I somehow patronize Donna? The prospect makes me ill,” Crosby writes. “My delicate feelings, however, are no guarantee against patronage—our intimacy is very real, but it’s we who have the money.” Writing candidly about the contradictions of her interdependence with Donna is essential to the ethics of Crosby’s project, as is her call to improve working conditions for caregivers.

In its powerful recognition of interdependence, A Body, Undone reveals the multiplicity at the heart of the question, “what happened to you?” For Crosby, the “you” in that sentence is profoundly interconnected with those who love, rely on, and care for her. That “you” is also internally fractured. Having dispensed with the clinical details of her injury, Crosby’s memoir is devoted to exploring the jarring incoherence that arises from her effort to comprehend the answer to the question “what happened to you?” for herself. Crosby seeks to make sense of a transformation that in many ways defies meaning, understanding, and belief. Ultimately, the answer is not to be found in the details of how a body was undone, but in how one lives on in the wake of its undoing. icon

  1. Erin Tatum, “5 Things Not to Do When Interacting with Physically Disabled People,” Everyday Feminism, August 1, 2014.
  2. Michael Bérubé, The Secret Life of Stories (NYU Press, 2016), p. 43.
  3. See H-Dirksen L. Bauman and Joseph J. Murray, eds., Deaf Gain: Raising the Stakes for Human Diversity (Minnesota University Press, 2014).
  4. James Berger, The Disarticulate: Language, Disability, and the Narratives of Modernity (NYU Press, 2014), p. 160.
Featured image: Christina Crosby and Janet Jakobsen. Source: News @ Wesleyan