Disability Memoirs in the Academic World:

Abstract

This article aims to examine how academic memoirs by disabled women exert a specific cultural mediation in contemporary society's perception of disability. Mary Felstiner's Out of Joint (2007) and Simi Linton's My Body Politic (2006) are two examples of what G. Thomas Couser has called the “new disability memoir,” as they are so highly self-aware about the issues involved in representation and disability (2009, 164). Moreover, inasmuch these texts focus to a significant degree on the narrator's professional life, I would like to analyze them also as academic memoirs; in both, we invariably find the academic background as the platform from which they are able to build up a renewed identity. As their academic careers unfold (Linton's in psychology and Felstiner's in history), these women try to understand the deep changes their lives and bodies undergo with a severe impairment. In this context, I will look at the identity strategies these authors consciously use in order to become affirmative models of disability, showing the “damaging effects not of disease or impairment but, rather, of the cultural mythologies that interpret those conditions in reductive or disparaging ways” (Mintz 2005, 1).Mary Felstiner and Simi Linton live quite parallel lives. Both have Jewish family backgrounds, both are happily married, both are feminists, and both will eventually become university professors. Before all that, they also share a generational time frame. They were born in the 1940s, and it is around 1970 (Felstiner in 1969 and Linton in 1971) when, still in their twenties, they meet disability most unexpectedly. This is the turning point at which both choose to begin their memoirs. Felstiner recounts how, shortly after the birth of her first child, she awoke at night with a severe pain: “I was still young, [when my joints] suddenly turned old. Then from one day to the next my life got thrown out of joint. An ailment called rheumatoid arthritis took hold of me, along with two million other people, mostly women” (2007, xi). In her book, Felstiner offers a multilayered investigation of the personal, political, and cultural aspects of coping with a debilitating illness while juggling the responsibilities of a university professor, wife, and mother (Margolis 2006, 250).Simi Linton, on her part, suffers a car accident while hitchhiking from Boston to Washington, D.C., in 1971 to protest the war in Vietnam. In a shocking beginning, we read how they never got to Washington: “By the end of the day, my friend Carol was dead and my husband John, the ferociously smart man I'd married much too young, was in a coma he would never wake up from,” while Linton was “tethered to tubes and machines, breathing hard to keep myself alive” (Linton 2006, 2). She is left with a severe spinal cord injury which will immobilize her legs forever. And she adds, “The meaning this new body would have for me took years to know” (3). These years are recounted in her memoir; eventually she “gained the vantage point of the atypical, the out-of-step, the underfooted” (3), as she puts it. It takes her some time at Berkeley, a degree in psychology from Columbia University, and graduate work at New York University, to finally find her way into disability studies and thus be able to feel comfortable with her new perspective on the world.Thirty years later, in the 2000s, both women publish powerfully moving and carefully written memoirs that recount the process that took them from tragedy and catastrophe to a positive identity as disabled women. As reflected in the book titles, both texts move constantly between two different levels of living disability, as a political and as private experience: My Body Politic involves the parallel stories of Linton's own disability and the disability rights movement, while Felstiner's subtitle is also rather explicit as she recounts her “public and private story of arthritis.” Both manage to identify the social and cultural barriers faced by disabled people, thus aiming to make a change in the perception readers have of disability and illness.Specifically, these two memoirs are reinforcing an “affirmative model of disability” defined by Swain and French as “essentially a non-tragic view of disability and impairment which encompasses positive social identities, both individual and collective” (2000, 569). This model questions the divide between disabled and nondisabled based on impairments, on wrong perceptions, and on a lack of understanding of disability.1 Personal narratives are able to cross this divide challenging negative perceptions of disability, as they show that being disabled “need not be a tragedy … but, on the contrary, enhance life or provide a lifestyle of equal satisfaction and worth” (570). Since an affirmative model is by disabled people about disabled people (581), personal narratives of disability are a suitable means to work for it. It is basically from their position as academics that Linton and Felstiner set out to describe their vital processes of overcoming emotions such as pity, shame, or self-blame concerning their disabilities, thus validating themselves and their experiences.My Body Politic and Out of Joint show a close relationship between a professional and personal life. Not only are the writers' academic fields and topics of research chosen autobiographically: their whole trajectory as academics, from graduate school to tenure to consolidated research, is inseparable from the development of their own disability and personal acceptance and understanding of it. Thus they can very self-consciously embody the new meanings of illness and disability; in a way, we could even say that their life narratives support theoretical and critical studies concerning disability and illness.In both cases the academic world helps them keep going, both materially and intellectually. Materially, it is their tenured position that provides them with steady health insurance that covers their expensive treatments and rehabilitation sessions. Moreover, the flexible nature of the academic job allows adapting time and place, quite necessary in the case of disability. Thus, Linton and Felstiner are very aware of their privileged situation and how academics with disabilities are not very representative in this way of the larger community of disabled people (of whom so many are unemployed) (Felstiner 2007, 102–3). This awareness is what partly makes them write their memoirs; for Felstiner to realize that rheumatoid arthritis (RA) is much more prevalent in people below the poverty line “comes as shock that calls for true-life stories” in order to give voice to those that “have my elbows minus my income” (102).Intellectually, these authors are in the best position to tell their stories. First, they are constantly nurtured and guided through their respective disciplines—Felstiner as a historian and Linton as a psychologist—and they are able to find new approaches that solidly support disability consciousness and their own identities. Moreover, they are professionally trained to do research on the physical and psychological consequences of their impairments. In the second part of her memoir, “Getting Wise,” when confronted with the disease, Felstiner decides to do some research, what academics do best, teaching herself along the way (47–49). Moreover, she recounts how she looked for a book about someone struck by arthritis and how his or her life turned out, and she discovered that nothing existed to prepare her for what she would have to endure: “Here we have a monstrous malady and no full story from a sufferer or even one account of its long-term impact on human society” (92). As an academic, she simply needs to read more about it, “health books … library abstracts, catalogs” (92).2 So Felstiner turns to literature exhaustively. She goes back to a distant past to search for references to arthritis, and the few mentions she finds to this disease function as a kind of relief for her.The title of her memoir is already hinting at the cultural background she is relying on, as it refers to Hamlet's famous dictum “The time is out of joint” (Hamlet, 1.5.206). She also finds very meaningful words in Psalm 22: “I am poured out like water, and all my bones are out of joint” (Psalm 22:15); Felstiner writes, “In these ancient words my despair sounds recognized” (88). Moreover, from the Romans, she learns words that actually help give a name to what is happening to her: calor, rubor, dolor, turgor (“heat,” “redness,” “pain,” “stiffness”) (Felstiner 2007, 43). She will often go back to these words as part of the fluency of language that she needs to cover up for the loss of fluency in motion, as she puts it (186). In fact, one of the most dramatic moments in her memoir is when she realizes she is losing her voice: “Chronic pain has trouble talking” (53). Soon she becomes a “proverbial silent woman … for me the end of free speaking is the end of being” (98). While narrating this, she is also making up for it in the very narrative she is weaving around those events. She looks for public figures of collective history who could have shared her experience. Thus we are also provided with scattered information about her fellow sufferers in literary and cultural history: Thomas Jefferson, Adrienne Rich, Eudora Welty, and Flannery O'Connor, among others, who actually stopped writing because of the arthritis. These learned references place her in a cultural tradition that will help transform disability discourse and conscience, adding another layer through which the reader can make sense of the disease.Specifically, Felstiner's and Linton's academic background allows them to effectively build up an affirmative model of disability. Feminism and Jewish studies are going to provide these authors with a theoretical framework to further understand and appropriate their new disability identity. Linton narrates how when she was doing psychology at Columbia, she took a course on women's psychology and she found nothing on disability. So she had to set to develop the academic field herself, starting with the application of feminist concepts to what disabled women were experiencing. Since there was no existing material to base a paper on, she conducted a series of interviews with disabled women, and she found common patterns of abuse and discrimination. She also found “how doctors presumed to speak for us and made pronouncements about our needs and experiences” (Linton 2006, 65).For her part, Felstiner turns to history and its research methodology to make sense of her multiple roles, evolving toward a new identity as a disabled woman. Combing library stacks for memoirs, library abstracts, chronicles, journals, diaries, she assembles her own fragmented history. “I have no where to go but history…. Think back through the joints” (Felstiner 2007, 109; italics in the original). She then recounts the process of “healing by history” (207). Treating memoir as “a form of history” (x), Felstiner turns to her Jewish family history (141), to her medical history (135), to the history of medicine, to her domestic history, always in search for meaning. With this thorough historical revision, Felstiner is then in a position to project a new image of arthritis, thus modifying the common ways in which arthritis is generally perceived, reflecting both the political neglect and the personal shame that has surrounded it for years (174). One of her constant complaints is how privately RA is suffered by millions of Americans. She now provides abundant data and statistics that show that it is a major public health problem: “I wake with 40 million other Americans whose consciousness of day is consciousness of pain” (54); two million of these individuals suffer from the same degenerative arthritis she has (69). If when she first met arthritis, it was an unpictured body and unvoiced pain (55), she now provides a full picture of it, historical, artistic, personal, intimate, through her own body, and her own voice, “thus giving a voice to a silenced, pained majority” (Millett 2006).Therefore, both texts show how a disability status may even provide their authors with certain “benefits,” as Swain and French explain, regarding a common feature of writings by disabled people (2000, 574). The most beneficial effect has to do with gaining a new perspective on the world that provides the authors with a “heightened understanding of the oppressions other people endure,” and thus with an improved ability to empathize with disabled people (575). It is actually during the years they recount (from the 1970s to the 2000s) that a disability rights movement develops and consolidates; definitely, the inclusion of references to the political and social advances of the disabled people's movement becomes a defining characteristic of the new disability memoir (Couser 2009, 190), thus reinforcing the idea that the affirmation of positive identity is necessarily collective as well as individual (Swain and French 2000, 577).3As a feminist historian, Felstiner also shows how disability rights draw on feminist insights: “Sex and impairment come from biology,” she argues, “while gender and disability takes cues from society…. Only prejudice makes impaired people disabled” (2007, 171). Moreover, she will also point out certain parallels between Jewish history and the history of disability. In a class she teaches, she draws “a genocide timeline on the black-board, from ‘Native Americans’ to ‘African slaves’ through ‘Armenians’ up to ‘Hitler's Reich.’ … After class I'm thinking that the example is extreme but history works this way, including the history of disability” (166). Felstiner recounts how she was devastated by one incident that showed the presence of anti-Semitic feelings on campus: “An artist makes a Malcolm X fresco at San Francisco State's student union, painting Stars of David next to ‘African blood’ and claiming that ‘Jews owned 75% of all slaves, … I summon the nerve to speak about the dangers of Judeophobia, but some students only ask, ‘You believe the Holocaust matters more than other genocides?’” (90). She compares the physical pain caused by RA with the pain racism produces, adding that if she were offered a choice, she would choose RA: “When the fresco is finally removed, I know its lies have burned me as deeply as joint pain. If the Angel of Anatomy ever offers me a lifetime choice, anti-Semitism or arthritis, I won't turn down my disease” (90).Thus, it is this constant blending of personal criticism and lived experience what enables these authors to somehow function as correctives of the negative perception of disability, as it is generally viewed through the so-called tragedy model, whose central assumption is that disabled people want to be other than as they are, always in search of or hoping for a cure. Linton describes in detail the process that took her from a medical to a social model of disability, that is to say, from victim and patient, to psychologist, academic, and activist. It is in Berkeley in the 1970s where she awakens to the collective experience of disability, realizing that “society was configured for those who walk” (2006, 54), and that she was supposed to “squeeze” herself “into their world” (41). Her political activism then wakes up: “Might I play a part in reconfiguring the world to let me in?” (41). When her mother calls her to tell her of new research on cures for spinal cord injury, Linton explains in which terms she is actually rejecting the medical model: “There is no cure for this condition I have…. Not a get-up-out-of-bed, stand, get-dressed, walk-to-the-supermarket kind of cure. Not a Christopher Reeve kind of cure, which he told the public would be right around the corner if we just donated enough money…. I wasn't rejecting ‘cure,’ I was choosing not to participate in the quest for one” (69). And she further explains, “I did not want to risk losing [this] new vantage point on the world…. I am more interested in finding a way out of the tunnel, doing away with tunnels, building accessible campuses and laws to insure them, than intrigued by finding a way to get my legs moving” (69).In contrast, Felstiner does search longer for a cure, before she is able to gain a disability perspective on the world. One of the key moments in this process takes place when she realizes that she is wrongly perceived by the doctors. She makes an interesting comparison between how she feels at the time and how doctors see her. She quotes from her medical records: “She feels that she lacks the energy but she is really one of the most incredibly energetic people I know” (2007, 24). Although we might think she should be flattered by this apparently positive view of her, she actually reacts rather differently. While she is not being underestimated, as in many other cases of disabled patients, she is wrongly perceived and her condition simplified. If she gives the impression of being energetic, it seems to her, her terrible pain and constant exhaustion are not taken care of. This disparity in patients' and doctors' perception of RA is part of the reason that she sets out to write her own version of what living with RA is actually like. Moreover, she is keen on challenging other wrong perceptions and prejudices against RA, such as the well-established one between RA and old age, showing how it affects any age group in the United States (49).Linton and Felstiner appropriate the medical discourse and infuse it with life and new linguistic efforts in order to reflect their newly acquired perspective. We may argue that these texts, as well as other academic memoirs on disabilities, serve to shift the images and narrative structures through which we see people with disabilities, in a way that is intellectually as well as more emotionally compelling than theory or analysis alone could be (Franklin 2009, 267). Some of the more emotionally engaging passages are those that deal with the authors' personal relationships. Linton and Felstiner provide ample evidence of how disabilities affect these, demonstrating how it is not impairment itself that may prevent them from having satisfactory relationships, but rather private shame and the social stigma attached to their condition. Both authors work hard to arrive at an understanding of the new emotional bonds they establish with their partners, until they can finally cast a rather positive view of those relationships. In this regard, the moment when Linton recounts the first assumptions doctors made about her is revealing: It wasn't until the third or fourth week [after the accident] that a doctor came to tell me that my legs were paralyzed….The doctor stood over me, and delivered his news, not hurriedly, not insensitively, but briefly. It seemed he might leave then, but he turned back to me lying there in my bed. “You know,” he said, “there are many young men coming back from Vietnam in the same situation as you, and I know you'll find someone really nice to settle down with.”That woke me up. How absurd this man was. Did he not know my husband had just died? … Did he think that I could now simply be matched up with a Vietnam vet, two people with nothing in common but our wounds? (2006, 4)From this shocking, firsthand experience of the prejudices and shame attached to disability, Linton will move on to obtain a high awareness of the importance of this dimension of women's lives; in order to make a change, one of the first projects Linton tries to implement at the beginning of her career were sexual educational programs for disabled women.Linton also constantly emphasizes a rather positive perspective in other areas of her life. Through wit and humor, she introduces a cast of remarkable characters (which include friends who teach her to dance in a wheelchair and a professional dancer with one leg) who can radically change the way we “walkies” understand disability. When she says things like “Everything I know about dancing I learned from a quadriplegic” (77), she is humorously challenging traditional ideas of dancing and artistic expression. It is this perspective of disability as an alternative identity, not just as pathology, that makes people with disabilities constitute a minority, in fact, the largest minority in the United States (United Nations 2006). In this paradigm, disability is located “not in the individual body, but in the body politic. Thus paralyzed individuals are immobilized not by their inability to walk but by aspects of the built environment that impede wheelchair travel: lack of curb cuts, ramps and elevators” (Couser 2008, 354).The basic narrative pattern upon which these narratives are built further supports an affirmative sense of disability. These stories are based on a turning-point structure that counteracts disruption; thus instead of disconnected fragments, there emerges “a story of continuity with phoenix-like affirmations of new meaning in life” (Rimmon-Kenan 2002, 17).4 Using a conversion narrative pattern, Felstiner summarizes the main stages in her life since RA: “I've been moving like a pilgrim through stations … getting hurt by arthritis, then getting wise to it, then getting help for it” (2007, 174). These stations reflect the chronological, emotional, intellectual, and physical stages of the disease, and how they shape her identity as a mother, a patient with RA, a historian, a wife, a daughter, and a friend.This acceptance of her identity as a disabled woman is finally expressed in a coming-out narrative. Although usually associated with queer autobiography, the coming-out pattern also readily applies to disability, as it “makes visible formerly invisible subjects” (Smith and Watson 2010, 152). Felstiner first thinks, “Am I disabled? Probably not” (2007, 82). However, after encountering people and texts from disability studies (she reads No Pity by Joseph Shapiro, activist Paul Longmore is hired in her department, and so on), Felstiner realizes that she has to “come out”: “By now my safeguard—nobody knows my trouble—seems to have lost its use. There is no point in pretending I can pass, all handicaps hidden” (84). This turning point is very common in many other illness narratives. An illustrative example of this pattern can be found in “Normal Is a Place I Visit,” where Suzanne Fiala, a family doctor with bipolar disorder, recounts the secrecy, isolation, and shame that accompany illness and disability: “I have lived in fear that one day I will be unable to continue the pretence of being normal and I will be ‘found out’” (Fiala 2004, 2925). She explains that she has rebelled against this situation and that “it is time to give mental illness a name, a face, a story”; that is why she is “stepping out of ‘the closet’” (2926). In publishing their stories, in no longer pretending to be other than they are (2916), these authors realize that they can make a comprehensible social and political claim that will benefit many others.Both Linton and Felstiner consciously connect their private lives to the social history of disability in the last decades of the twentieth century. Felstiner, while arguing that she is “trying to heal by delving into history,” also acknowledges that “tracing a private timeline, and splicing it into a public one, has been the single best discovery of my chronic years” (2007, xiii). For her part, from the very beginning Linton seems to be weaving her private story with public U.S. history, since the accident that provokes her disability has a close link with the Vietnam War and because her later life will follow a new path of political activism (significantly, the book closes with her opposition to the war in Iraq). As James E. Ryan explains, Linton's memoir contributes substantially to “the labor of giving voice and dignity to persons who had long been relegated to the margins of American society” (Ryan 2006).Far from being complacent about what has already been achieved, these texts provide evidence of the number of cases in which disability rights are not respected. They point to the failures of the application of the American with Disabilities Act, issued in 1990 and a major touchstone in the history of the achievements of disability activism. Felstiner denounces, for example, the invisibility of RA sufferers as disabled people: “Rarely do RA patients recover, and most decline into disability after just five years. What's worse, no one notices their early expiration date. RA is an indirect cause that isn't listed on death certificates. So patients and politicians don't realize arthritis kills” (2007, 76). This political neglect is exemplified in her personal experience of being denied help for her research during a sabbatical (82). This awakens her to the realities of disabled people and brings her closer to accepting her identity as a disabled woman.Furthermore, we could argue that this affirmative model might help counterbalance the negative criticism directed at the autobiographical project, both the academic memoir and the disability memoir, basically in terms of their supposedly narcissistic and individualistic nature. The proliferation of the genre has been met with some skepticism from disability scholars and activists, who are concerned about the implications of pursuing the self-referential path of Western autobiography (Mintz 2007, 7–8). As David T. Mitchell argues, when disabled writers comply with autobiography's “devotion to narcissistic self-revelation,” they may endorse a myth of sovereign individuality at the expense of fostering “documentation of disability as a communal identity” (2000, 311).Nevertheless, it seems to me that these memoirs cannot be considered individualistic acts, as they do have a definite social and cultural impact on the way disability and illness are generally perceived. As Couser points out, “Disability life writing … should be seen not as spontaneous ‘self-expression’ but as a response … to the traditional misrepresentation of disability in Western culture” (2005, 604). Felstiner's and Linton's books, like other disability memoirs, while adopting traditional narrative patterns, avoid the trap of autobiographical solipsism by manifesting an identification with others who share their condition (Couser 2009, 178). Thus these authors are able to challenge preconceived ideas about their position as disabled women through their writing. They actually recount success stories, not in the traditional sense, of describing the experience of being cured, but in portraying disabled people leading fulfilled and satisfactory lives (Swain and French 2000, 571). It is in this way that, as Rocío Davis has argued, these autobiographical projects can be read as the performance of an ideological position, much more than just as an individualistic portrayal of the self (2009, 2). We can also appreciate how academic theories are not used in the memoirs to cast a shadow of abstraction over individual experience, but rather are usefully applied to disability theory. In fact they come to prove that a major “strength of disability studies has been its close connection between scholarship and activism” (Corker and Shakespeare 2002, 13). Moreover, as Cynthia Franklin extensively argues in her book Academic Lives, memoirs by academics that engage disability studies provide a particularly good vehicle for conveying to a crossover readership the personal effects of, and thus the need to resist, forms of oppression that other genres can represent as abstractions, because “they can demonstrate the power of the connections between emotional or empathic intelligence and institutional analysis” (2009, 27). Thus narratives of disability can refuse individualist representations of the subject as autonomous and independent without dismissing the importance of or equating individualism with the possession of a sense of agency and self-determination (223).5In conclusion, the ultimate and most effective strategy these women use in order to rewrite cultural mythologies about disabilities is the publication of their first-person testimonies. In them, we see how well-crafted and self-reflexive narratives can be a call to witness in a thought-provoking and accessible manner to a variety of diverse audiences and not just to “expert” readers of academic journals (Smith and Sparkes 2008, 25). From their academic backgrounds, both Linton and Felstiner can now offer an alternative discourse of disability, a discourse which allows for self-understanding and self-representation, as it engages intellectually and emotionally. As Susannah Mintz argues regarding disability memoirs, “The various kinds of narratives crafted by these authors are not just manifestos for resisting oppression, detailed accounts of medical conditions, or sociological case histories, though they contain elements of each of those rhetorical genres…. They are also open-ended histories of embodiment, tales about anomalous physicality that emphasize a poetics as much as a politics of disability identity” (2007, 4). Thus, these personal narratives effectively contribute to the generation of a distinctive culture that emerges around disability, a culture that, having learned the lessons of race and gender, is now ready to be a positive affirmation of difference.