We Don’t Need Another Hero: One Woman’s Disabled History

March 3, 2013, 8:55 pm

2235_regHarilyn Rousso, Don’t Call Me Inspirational: A Disabled Feminist Talks Back (Philadelphia: Temple University Press, 2013), 224 pp., paper $24.95.

From its title onward, New York activist Harilyn Rousso’s Don’t Call Me Inspirational: A Disabled Feminist Talks Back argues against the American romance with parables about everyday heroism and triumph over adversity. Instead, this book asks: what would a public that is welcoming to disabled people actually look like? An American Studies Association panel I attended last fall, riffing off of Dan Savage’s It Gets Better YouTube campaign for GLBT youth, put it this way: what if “it” doesn’t get better? What if there is no cure, no triumphant overcoming? What if the body you have is the body you get? Can we imagine instead narratives about rich and full lives with disability?

These are crucial questions, and it is is why you need Don’t Call Me Inspirational if you are teaching disability, feminist, gender or queer studies (to start with the short list.) You need this book if you have a disabled family member or friend. You need this book if you have ever confessed, to yourself or to an acquaintance, about someone disabled by severe injury or illness, “I wouldn’t want to live that way.” You most especially need this book if you attribute special courage and grit to disabled people trying to teach a class, pay their taxes, drive to work, buy shampoo or otherwise going about their business.

One of the first questions from the overflow crowd at Rousso’s reading, hosted by the Public Science Project at City University of New York last week, was the perfect setup: “Why don’t you want to be called inspirational?” an able-bodied listener asked.

It’s worth pointing out, of course, that you would never say this if you knew Harilyn Rousso. If you did, it might be because of her work as a psychotherapist, feminist, artist and long-time disability rights activist. But Rousso pointed out that it is not uncommon to have complete strangers – who know none of these things about her – go out of their way to tell her that her presence in, say, Rite-Aid, is an inspiration to them. Having the courage to leave the house, she said pointedly, is “a pretty low bar.”

Rousso elaborates on the real reasons behind this false praise early on in the book. “I know, I know,” she writes, “if you were me you’d never leave your house and maybe even kill yourself. So I’m an inspiration because I haven’t killed myself – yet.” Navigating an able-bodied world that doesn’t want to see her, much less deal with who she is or what she thinks, is an obstacle as real as her disability. “I put up with the barriers, the barricades, the bullshit you put between us to avoid confronting something – probably yourself,” she writes; “and still pay the rent on time and savor dark chocolate. Now that takes real courage.”

This strikes me as an extraordinarily important point. It is, perhaps, even more urgent at a moment in which in the United States, after ten years of war, can expect to welcome almost 200,000 veterans with permanent disabilities back into our families, communities and universities. As Rousso points out throughout her critical memoir, disabled people not only have to navigate “the barriers, the barricades, the bullshit,” but also they are tacitly responsible for making able bodied people feel comfortable in the presence of disability. For example, cerebral palsy can make it difficult for Rousso to speak clearly, sometimes causing people to believe that she is drunk or mentally impaired, and she would like to simply “acknowledge that fact and move on.” But to “most people, the news that another has a disability, speech or otherwise, would not be a neutral fact,” prompting commiseration or an expression of pity that “would transform the fact of disability into a stigma for me.”

The title of Rousso’s book, then, forces the reader’s attention to a crucial question of disability rights: the freedom to have a conversation about a utility bill, the price of a used car, or a national election without being forced to talk about what other people think about your body. A second right the book highlights is the freedom to live without forced dependence. Rousso credits her autonomy to her family’s – and especially her mother’s – determination not to allow other people’s doubts about her abilities to limit her opportunities. Not surprisingly, at a time when most disabled children were schooled at home or in institutions, Rousso (now in her sixties) was nearly always the only disabled person in any school setting, mainstreamed before mainstreaming had been invented.

Living in Washington, D.C. after graduating from Brandeis as an economics major, Rousso joined a feminist consciousness-raising group. There, she confronted her lack of confidence in her own femininity. At twenty-four, she had for some years wanted to explore the possibilities of sex and love with men, but had never dated, was critical of and self-conscious about her own body and worried that she would never be desirable to anyone. But as she soon discovered, that was true for able-bodied women too: “No one seemed freaked out by my tale of difference,” she writes. “Several other women had their own tales.”

Rousso learned to think about her body in new ways: she began to date, fell in love at least twice, and has for many years lived her life in an intimate partnership. She has since developed mentoring programs for disabled girls that focus, in part, on recognizing them as sexual beings. In this regard, as it turns out, it does get better: a difficult barrier for disabled youth is not being able to picture what it would mean for them not to be dependent on family; or to have an adult love affair, build a career, choose a home and furnish it. Trips around New York City with disabled mentors “even to McDonald’s, without their parents present and hovering made them feel grown up in ways they rarely had experienced before,” Rousso writes. “For a few, the prospect of eating out motivated them to learn how to use the newly accessible public buses.”

Don’t Call Me Inspirational reflects on Rousso’s life.  But it is also a personal history of the second half of the twentieth century when disabled people have come out as a visible, vocal, rights-seeking constituency. As Rousso points out, when she was growing up in Cold War America, a child with cerebral palsy would most likely have been kept at home or sent to a special school for disabled children. That she was not makes her an important lens on this experience, but also makes her a savvy guide for the barriers that disabled people face today as they navigate relationships with able-bodied parents, professionals, teachers and potential friends.

In fact, one lesson from the book is that well-intentioned able-bodied people who seek to be allies to disabled friends and family will make  unintentional mistakes. As Rousso points out, if her mother (who had taught herself to drive) overcame the dire warnings of others in helping her acquire her own drivers’ license, her father assumed that he would always choose and pay for his daughter’s cars — until she firmly asked him to stop. In one of my favorite social missteps in the book, Rousso notes that she hates the ceremonial, sisterly hand holding at the end of feminist conferences, as it causes the involuntary motion characteristic of her own hands to intensify.

This is a book that belongs in feminist and gender studies courses for many reasons, not the least if which is because it points up the near-absence of disability consciousness from otherwise progressive locations. Invited into important feminist circles, Rousso nevertheless too frequently found herself to be the only disabled person there, having to patiently move an agenda forward alone and encounter the frustrations of being among people of good will who had yet to think seriously about how they had made her the “token ‘crip.’” (168) Although now almost “every women’s conference addresses disabled women’s issues in at least a few sessions,” there are too few women with disabilities in leadership positions “and those who do are often ‘the first and only.’” (174)

This is a book that is full of generative critique, embedded in the story of a life that itself has many lessons to teach. Don’t call it inspirational: call it energizing. It is written in short chapters, with an accessible style that is alternately funny, wry, serious and acerbic. This able-bodied feminist finished reading the book before classes began and was moved to take a look at my introduction to gender studies course with a newly critical eye.  Sure, I had disability studies – but was it enough? And how was I using it? Despite my average acquaintance with this growing field, I saw new places where work on disability could enhance the week’s discussion about gender, race and sexuality, and made more changes.

Because those jerks who walk up to people in the Rite Aid and call them inspirational? I don’t want my students to be among them.

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