Sexuality and Disability, Vol. 12, No. 2, 1994

E d i t o r i a l : W h e n is a W o m a n N o t a W o m a n I Carol J. Gill, Ph.D. 2

My primary physician and several specialists I respect all practice at a major university medical center fairly close to my home. Recently, though, when I requested a gynecology referral there, I was told that I would not be seen unless I could bring my own assistants to help me get on the examining table. This is a huge world-renowned hospital. This is the era of the ADA. Still I am treated as though I don't belong with the other women who seek services in OB/GYN unless I can make my disability issues go away. This news makes me weary. I know it means once again that I can't simply pursue what I need as an ordinary citizen. I can't be just a woman who needs a pelvic exam; I must be a trailblazer. I must make the many phone calls and present the many bits of legal information and persuasive arguments it will take to get me into that clinic. It's hard w o r k and I don't feel like doing it. I don't want to contact all the advocates to check on my latest rights and remedies. I don't want to modulate my tone of voice into polite but assertive diplomacy. I resent having to convince people in the health system that I deserve integration. It would be easy to postpone it. I could join all the women with disabilities who have been turned away by this clinic and have stayed away because they didn't have the energy or resources to fight for their right to accommodation. I could join them in jeopardy. How many women fail to receive timely health services and prenatal exams because they don't feel up to the great magic trick of making their disabilities disappear so they will be worthy of mainstream medical practice? My rage (as usual) overtakes my fatigue. As I write this, I am waiting for the OB/GYN clinic coordinator to hear the message I left for her to call me. I am rehearsing my most good-humored, reasonable and informed approach so I can threaten to act on my rights while remaining likeable. JThis article appeared in the May/June, 1993 issue of The Disability Rag. Copyright 1993 by The Avocado Press. Reprinted with permission of the publisher. 2Address correspondence to Carol Gill, c/o The Disablility Rag, Box 145, Louisville, KY 40201. 117 0146-1044/94/0600-0117507.00/0 9 1994 Human Sciences Press, Inc.

118

Carol J. Gill

I have been placed in this ridiculous position because the health service system, like society, views me as anomalous--as some special version of human unlike all others. Medicine says the needs of disabled people are not the business of all medicine; our needs are to be addressed in special departments, usually rehab. How foolish of me, then, to seek reproductive health services in my neighborhood at a highly regarded clinic where other women I know go. Question: When is a woman not a woman? Answer: When she's disabled. And so I am told to arrange the 60-plus-mile round trip to a rehab hospital where the staff are "accustomed" to people like me. Ironically, I am on the advisory board of the women's health center at that rehab hospital. Alongside a staunch core of other women with disabilities, I have been working to make this women's health center as much a part of our community as it is a part of rehab. Veteran survivors of the rehab system who are reading this may scoff at the idea that anything housed in a rehabilitation hospital can be co-owned by the disability community. I don't blame you. After working for years as a psychologist in rehab settings, I have developed my own cynicism abut the power structure of rehab medicine. I know the professional versus patient dynamic is highly political and has effectively bulldozed any real consumer control of health services. Nonetheless, I am strangely captivated by the idea that the strength of women and the strength of people with disabilities can combine to negotiate with rehab for quality services that we are not getting anywhere else. Where should we put our energy: making rehab address the needs of women, or making woman's health settings accommodate people with disabilities? In thinking about disability identity, I have always appreciated the tension between acknowledging our uniqueness on the one hand and, on the other, affirming our oneness with the rest of humankind. Because women with disabilities have authentic disability-related needs that are to some degree "unique," surface logic supports the advisability of serving those needs in settings where doctors understand disabilities. Physicians who lack knowledge of disability can harm women by drawing uninformed conclusions, e.g., "You won't have to worry about osteoporosis because you don't walk" or "If she's living under staff supervision in an institution, she won't need contraception." But are my disability-related needs any more unique than the unique needs of African-American women, battered women, or lesbians? Are all minority women to receive health services in their own special places? Or is it that I am more disabled than I am a woman? Some women with disabilities that I meet who fight for integration on all other counts strongly prefer gynecological services at a rehab facility. They feel comfortable in surroundings where they believe their disabilities will be understood--where medical staff may have worked with many other women with sexual, parenting or menopause experiences similar to theirs. Other women I meet feel dehumanized in the rehab system--where they feel categorized and

Editorial: W h e n is a W o m a n Not a W o m a n

119

diagnosed into the powerless role of patient--and resent being forced to go there for services related to being a woman. They see mainstream feminists increasingly wresting control of their health services from the male-dominated medical establishment. Understandably, they feel insulted when denied breast exams and Pap smears in clinics where all other women are welcome. Maybe this all comes down, right now, to one of those items of choice. Maybe women with disabilities in the world as it is right now deserve a chance to choose for ourselves whether, as individuals, we want our health needs addressed in a rehab hospital or a mainstream clinic. Maybe our comfort or sense of endangerment in either setting should be the deciding factor for each of us. Women's rights activists are debating whether the needs of all women would be best met by a specialized women's health discipline or by pushing providers in all areas of medicine to learn more about women's issues. Analogously, wouM the needs of women with disabilities be best met in a specialty focusing on "disabled women's health needs" or by pushing all providers who treat women to learn more about disability (including how to use consultations with rehab doctors as needed)? The women with disabilities who sit beside me at advisory board meetings for the rehab women's center seem to feel that if they are successful in working out a truly collaborative relationship with rehab, they will be empowered to: 1) provide health services and information of the highest quality available to disabled women, 2) improve our chances of getting better health services in the mainstream through educating health professionals and through supporting our self-advocacy efforts. So far, I have often been the cynic. I have wondered how segregation can spawn improved integration. I have wondered how an organization residing in rehab can belong to the community. But women activists with disabilities are an impressive force. And the rehab professionals who support this great experiment--most of them w o m e n - - a r e gratifyingly committed, respectful, idealistic, and nonterritorial. I work to keep my mind open. Since I started writing this article, I have won the long-cherished object of desire: an appointment at my local OB/GYN clinic. It wasn't easy, but it suddenly got a lot easier when I followed my husband's suggestion to ask for the medical center's ADA compliance officer. Once I uttered those magic words "ADA," "January 26" and "reasonable accommodation," a miracle transpired. I was told that all the stuff I had been told about bringing my own assistance was "ridiculous" (nervous laughter). "Who could have told you that?" they asked. "Everybody," I answered. "Please accept our apology. This is such a big place and it takes awhile before everyone learns changes in policy." Yeah. I thought of all the people with disabilities and our allies who fought to get the ADA passed. I thank them. Although the law is weak in many ways, it feels so good to be able to pull it out like a secret weapon to command respect from all those people who really don't seem to care whether I get a life-protecting medical exam or not. Thanks to my activist sisters and brothers, my foot's in the door now, and undoubtedly my body will get on that table!