Finding My Way
by Harilyn Rousso
It is a few days since I have arrived in this lush city in South America to attend a working conference on violence against women, bringing together twenty community leaders from Latin America, the United States, and Canada. The goal is to build an inter-American network, but the conference is poorly designed, with too much emphasis on “talking heads” and not enough on dialogue and informal networking. As the only disabled woman there, I face the usual barrier of being seen as an unwelcome outsider to a group of women who are trying to be respectful of cultural differences but draw the line at disability. Disability is seen as deficiency rather than difference, with no redeeming qualities; at best, it evokes guilt, since few around the table have made an attempt to include disabled women in their work, although when challenged, they agree they should, or at least somebody should. They appear unable or unwilling to conceive of the possibility that disability could be a source of strength and culture, that inclusion could strengthen, not burden, their programs. Cut off midstream because of time restrictions, my presentation, limited to statistics on the high rates of abuse of women and girls with disabilities, reinforces the notion of disabled women as victims rather than survivors and advocates. As a talking head with slow, halting speech patterns and unfamiliar body movements, my very presence further confirms their stereotypes about what it means to be disabled and female—sick, dependent, incompetent, vulnerable. Yet the fact that I am at the table as a peer rather than across the table as a client simultaneously challenges their negative assumptions. During the Q&A period, no questions are directed at me, although at the break, a woman approaches me with tears in her eyes: “You don’t know how much it meant to me to hear you” (“and to see you,” I imagine her thinking, “out of the institution where you belong”). Such emotional responses are typical in my life as a public speaker and are the clearest evidence of my failure to take listeners to a new level of awareness about disability and the lives of disabled women. There is little about my life that merits crying, other than my constant exposure to people who insist on crying about me; they infuriate me more than those who are overtly hostile. I feel most tempted to scream at, if not smack, the criers. But I remain a well-adjusted crippled girl and accept the woman’s comments with as much graciousness as I can muster. I tell myself that being cried at is better than being rendered invisible, although I am not entirely convinced.
Later on in the conference I talk with a few participants who have done a bit of work on disabled women or are making some convincing noises to the effect that they’d like to. Their comments help move me off of my island, that isolated, I’m-the-only-one space that I am quick to retreat to when I am not readily welcomed by a new group of nondisabled people. That island is an easy answer for me, one that has become part of my identity after years of exclusion; it is familiar, if not necessarily comfortable, and hence hard to give up. To attempt to push my way in rather than passively withdraw always feels riskier. My rational self knows that there are other participants at this conference who feel a similar isolation for different reasons, such as race or income level, yet don’t retreat quite so quickly.
By the end of the conference I’ve built a few bridges, albeit unsteady ones that need further reinforcement to hold. And I remember what I know but usually resist and resent, which is that I am inevitably seen as a freak or “the other” at first but that time is on my side. As hours, and preferably days, pass, I begin to blend in with others and slowly shift from the periphery to a place slightly closer to the center. The shift has its advantages—at the very least, there’s company for dinner—but it also comes with a price, sometimes too dear to pay. With those women uncomfortable with disability, I need to be cautious, to avoid appearing too different, too weird, so that I am not exiled once more. The island, however, the place in my head where I retreat in the face of real or anticipated rejections and say what I really know and feel, tolerates my most outrageous self who flaunts her differences with pride and fights exclusion without apology.
*This piece was previously published in my memoir, Don’t Call Me Inspirational: A Disabled Feminist Talks Back (Temple University Press, 2013); the painting is a self-portrait which appears on the book cover. Further information about the book is available at www.harilynrousso.com
Harilyn Rousso is a disability activist, feminist, psychotherapist, writer and painter. Considered one of the “founding mothers” of the U.S. disabled women’s movement, she has worked on issues of women and girls with disabilities for more than twenty-five years. She is the founder of the Networking Project for Disabled Women and Girls of the YWCA/NYC, the executive producer of the documentary Positive Images: Portraits of Women with Disabilities, the co-editor of Double Jeopardy. Addressing Gender Equity in Special Education, and author of numerous publications on gender and disability, including Disabled, Female and Proud! Her memoir, Don’t Call Me Inspirational: A Disabled Feminist Talks Back, was recently published by Temple University Press.