Book Review: Don't Call Me Inspirational (Harilyn Rousso)

Reviewed by Michael Northen

Life writing is probably the most flourishing subset of disability literature. Works like Stephen Kuusisto's Planet of the Blind, Simi Linton's My Body Politic and Lucy Greeley's Autobiography of a Face are not just required reading in college courses, they are genuine best sellers. Even so, there are still a flood of feel-good life stories about people with disabilities, calculated to tug at the heart with pity or inspire through a tale of overcoming. In other words, narratives that refuse to see a person with a disability as equal. Activist that she is, Harilyn Rousso is well aware of this. With the title on the cover of her recent autobiography, Rousso holds out her mantra against pity and second-class citizenship like a cross held out against a vampire: Don't Call Me Inspirational: A Disabled Feminist Talks Back.

The subtitle of Rousso's book, published last month by Temple University Press, is a bit misleading. Far from the feminist invective that it implies, Don't Call Me Inspirational is a remarkably even-handed account and reflection on a life with cerebral palsy. Even beyond that, however, the book has a pedagogical purpose, one that she announces in the first chapter.

"Having come to a place where I not only accept but at times appreciate and celebrate my disability status, I'd like to offer support and a bit of advice to young people who may be struggling with the fact that they have a disability and whom may be hoping be young hope that it will go away and that nobody will notice. I'd like them to consider the possibility that they can stop hiding and pretending, that they can claim disability and be all right."

In the devising a structure for her book, Rousso faces two tasks one a negative, the other a positive. As G. T. Couser emdash; who has studied the genre perhaps more than any other scholar — pointed out, disability narrative generally co-ops the structure of linear fiction. The practical implications are that a writer tends to be corralled into a narrative that demands a climax and conclusion. For writers with a disability this generally results in producing either a narrative of overcoming or a narrative of conversion. Implicit in Rousso's title is the need to avoid either of these structures. That is the negative challenge. The positive task that Rousso faces is how to tell her story in a way that achieves her stated purpose of providing some kind of help to girls and young women with disabilities today. What she comes up with is an organization that avoids strict chronological narration but focusing on major themes: five areas of interest that might be the most useful for her targeted readers to know about. Rousso's plan is such an effective one that the best way to discuss Don't Call Me Inspirational is simply by using the chapter divisions she has set out.

Close Encounters with the Clueless. The first section of DCMI is an apologia in the classic sense of the word and, from a literary point of view, the most creative section of the book. The title of the first chapter, "Whois Harilyn?" is answered in a way that gives her both an experiential authority and rationale for writing the book. As the author points out, cerebral palsy is not a sexy disability. She knows what it is to experience "the stare," as Goffman put it decades ago. In the opening line of his poem "To My Familiar, Queequeg" Mark Burnhope states, "I too am tattooed," and indeed, the visible physical differences that accompany CP mark one out in contemporary society as marginal as surely as Melville's south sea islander was marked. Rousso illustrates this feeling of marginalization both through a list of comments that she and many others with a disability are more than familiar with — not just "What's wrong with you?" but the equally condescending "You're so courageous." She recounts an instance in which a beggar, perceiving her as a cripple, refused to take money from her and a dialogue in which she imagines what she wishes she had had the courage and presence of mind to say at the time. It is this lived experience and the wish that she had had more support and resources to deal with these situations that motivate Rousso to write. One of the great lines in the book comes in at the opening chapter 7, from which is titled "Why I Am Not Inspirational." "My feet are too large, for starters—size twelve, huge for a woman." Then she continues, "I'm damn boring…I worry about paying the rent, eating too much chocolate, and finding telltale wrinkles–sound inspirational yet?"

On Leaving Home. For Rousso, one of the crucial steps towards independence for a person with a disability is to move out of their parent's home. This is closely followed by learning to drive. Because of her high academic achievement Rousso was accepted to college and, much to her horror, was told by her mother "in no uncertain terms" that she would be going away to school. As in the first section, the author's experiences help provide touchstones for college-age women today. Even to women without the means to attend college she insists, the importance of trying to live on their own cannot be underestimated.

On Not Looking in the Mirror. Of all the sections of the book, this third section may prove the most enlightening to non-disabled readers because it is the most specific about the lived-in body. Cerebral palsy affects the muscles of the body in such a way that it can influence almost every aspect of a person's life including, quite often, appearance, walking, speaking, facial expressions, and manual coordination. Rousso recounts an event at the age of fifteen when, after being questioned about her disability by a stranger, she came home looking for sympathy from her mother.

She responded in the same way she always did to my disability tales of woe. "Well, if you'd practice walking straight in front of the mirror like I keep telling you to, people would stop staring. I don't know why you won't do it. Don't you want to walk straight?" "No, as a matter of fact I don't!" I shouted and retreat to my room slamming my door.

Unlike poet Ona Gritz whose writing describes how her milder form of CP generally allowed her to "pass" as able-bodied, Rousso recognized early on what her mother could or would not, that she would never be able to hide her physical differences. In this section, Rousso discusses from the inside out the frustrations of dealing with facial muscles that would not cooperate, emotional modulations in her voice that she could not control and a wayward hand   and the greater frustration of society's response to her.

What's a Woman. "At age twenty-four, although anatomically female, I did not feel very womanly." With these opening lines in the fourth section of the book, Rousso addresses some of the topics foremost in the minds of many young women, ones that most clearly illustrate ways in which disability is as much a social construction as a physical impairment. As with the previous sections of the book, Rousso demonstrates her own authority to speak on these topics through illustrations from her own experiences. For me, one of the most poignant and disquieting moments of the book comes in chapter 31. Rousso was sitting with her father in their Long Island home feeling down. Her father, recognizing his daughter's mood, told her that he knew why she was depressed — she had no dates and men did not want to go out with her. With prodding, the author admitted that it was because of her disability. When she asked her father if he would ever want to go out with a woman with a disability, he replied, "No, I guess I wouldn't."

From examples such as this that emerge from her own life, Rousso covers topics of dating, sexuality, being jilted, finding a partner and "mixed couples." In all of these situations, Rousso is learning as she goes along. Because she has had to deal with her own ambivalent feelings, she is rarely didactic.

Why Claim Disability. Right from the beginning disability activism and feminism were linked. Saxton and Howe's With Wings (1987), one of the first anthologies of disability literary writing was published by Feminist Press. It is no surprise then that Rousso's own activist involvement came about, at least in part, through her involvement in women's groups. What is perhaps less well known is that women with disabilities and able-bodied feminists have not always had the same concerns. In her a book on the life of Diane Devries, Geyla Frank records a feminist meeting in 1982 in which the main speaker announces, "the concerns about sexual harassment affect all women" to which another conference participant responds, "You know, I use a wheelchair….when I go down the street I do not get to be sexually harassed." Even beyond the differences in agenda, though, Rousso recounts the tokenism she experiences and the initial lack of efforts on women's groups to take inclusion seriously prior to the days that she became involved with such luminaries of the disability rights movement as Corbett O'Toole and Simi Linton.

Interesting also in this section is the author's work in founding the Networking Project for Disabled Women and Girls. Early in her career as a psychotherapist, Rousso was very aware that many girls, especially those from minority groups with little family support, would not be able to have her experiences of a college education to help them become independent. She founded the project to try to give these girls/women some support, but, on Rousso's own account, often doubted that she was making much difference. What she discovered years later was that the greatest service she provided was simply to get these young women out into the community to see and experience all those things that others took for granted.

The last five chapters of Don't Call Me Inspirational form a coda that distills the experiences, observations and musings that make up the book. Using Linton's well-traveled phrase Rousso asks, "Why Claim Disability?" She rejects silence as a course of action, then says two good-byes. The first is to her non-disabled self, something that she can never be; the second is to her freakish self, a categorization that she rejects. The final answer is in the acceptance of her disabled self. This is not the denouement of sudden self-discovery. It is a reasoned conclusion from what life and experience have taught her.

Several years ago I made the rather flippant remark that life stories by people with disabilities were practically becoming a cottage industry. There is some truth to that. Certainly, the long drought between Helen Keller's The Story of My Life and the insightful autobiographical writing of Nancy Mairs is over. As critic Robert Scholes points out, life writing is the fringe genre by means of which previously excluded groups enter mainstream literature, and it has been a particularly fruitful entrance in the case of writers with disabilities. Such potential canon-busting is all to the good. The other side of that coin, however, is that not all of this writing is Pulitzer Prize-worthy. Much of it still gets branded on the cover by the publisher — if not the author – as inspirational, much is rather tediously written, and even much that is engaging simply has little new to say.

Given this context, Harilyn Rousso's Don't Call Me Inspirational is certainly a welcome arrival. While young women with disabilities can benefit greatly from the book, the author also has a larger audience in mind. Rousso states, "I hope to reach a broad range of audiences including those interested in disability issues, women's issues, youth issues--and simply those who like a good story." Indeed, there are few people who will not gain something from the book. Able-bodied readers are almost guaranteed to discover that they are guilty of many of the condescending phrases or inconsiderate actions that Rousso has described herself the object of — and not everyone with a disability is let off the hook, either. She poses tough questions about passing, something Rousso admits that as an adolescent she desperately wanted to do. Another major factor in DCMI's favor is that it is accessible. The chapters are short and the writing style conversational. The book is also mercifully free of jargon. While it is intelligently written, no college degree is needed to enter the pages. If academic credentials are necessary to place it on a classroom shelf, however, it is backed by Temple University Press, which has a long history of publishing work in the field of disability studies.

To some extent the author's reputation already guarantees the book's success. Even as it is coming off the publication line, Don't Call Me Inspirational is already inscribed in some classroom syllabi. Yet in writing an account that responds to the needs, hopes and fears of young women, Rousso has inadvertently set up a challenge to male writers. Though it may be less obvious from supermarket magazine covers, young men with physical disabilities, too, experience social marginalization. In a culture bathed in machismo, I'm waiting for Rousso's counterpart: the male memoirist with CP who can summon respect without climbing mountains or dropping out of airplanes, who can convince boys that manhood need not be equated with being photographed drunk next to a half-naked woman, who can provide the kind of assurance and guidance that Rousso does and still say, Don't Call Me Inspirational.