"I always felt like a neutral sex. It's like I'm not a woman, not a man. I don't know what I am because I was never approached like a woman and I guess that as I grow older and mature more, I have begun to proclaim that identity as a woman and thinking even if no man approached me, I am still a woman, I am still attractive."
- 36-year-old polio survivor with scoliosis
I know the feeling well--anxious to form relationships, but no one approaches you for a date; raised to expect that you will never marry; given little information on reproduction except that it should be avoided at all costs. I am a woman and only discovered that a few years ago. Until then, disability was a much larger presence in my life. I am also a rehabilitation researcher, and I leaped at the opportunity that arose in 1992 through the National Institutes of Health to investigate why this discovery takes so long for some women like me who have physical disabilities. What my colleagues and I at the Center for Research on Women with Disabilities found is that many women around the country have also experienced negative stereotypes and barriers to understanding and nurturing their womanhood. What we also found is that many women with disabilities have overcome the effect of those stereotypes and have had wonderful success in developing relationships, families, and satisfying lives. In this report, we will explain some factors we identified that seem to make the difference.
Many of us weren't supposed to live this long or this well. Those of us with severe physical disabilities have beat all the odds. From the time we were born or acquired our disability, we were told or we assumed that life would be short. The fact that we have survived, that we are having children, and that we are even living with gusto astounds the medical profession. In so doing, however, we are presenting medical science with a number of anomalies, mysterious conditions that defy diagnosis and treatment. Special disability-related needs during pregnancy, premature aging, unexpected responses to standard courses of treatment, and masking of symptoms by disability, frustrate those who are trying to deliver good health care to us. We are a population that medicine does not understand very well.
In 1992, we were awarded a three-year grant by the National Center for Medical Rehabilitation Research within the National Institutes of Health to examine the "Psychosocial Behaviors of Women with Physical Disabilities." Our enthusiasm for this topic, and the enthusiasm that greeted us from around the country in response to the announcement that we were about to begin this study, prompted us to establish the Center for Research on Women with Disabilities (CROWD) to conduct research on issues of concern to women with disabilities and disseminate the findings nationally.
Our study examined a broad range of issues facing women with physical disabilities. It consisted of two phases. Phase I was a qualitative interview study of 31 women with physical disabilities which helped us understand all the various aspects of sexuality from the point of view of the woman with a disability. You will see quotes from these women scattered throughout this report. The themes we identified in these interviews fell into six basic domains:
1. Sense of self
2. Relationship issues
3. Information about sexuality
4. Sexual functioning,abuse
5. General and reproductive health
With the assistance of national and local advisors, including consumers, researchers, medical professionals, social workers, and educators, the research team developed a questionnaire that represented all the primary themes from the qualitative study and issues raised in the literature. In Phase II, we identified 1,150 women with physical disabilities around the country who volunteered to participate in the study or who were recruited through independent living centers in each federal region. We sent each of them two copies of this questionnaire, one for her to complete and one for her to give to an able-bodied female friend to complete. We received responses from 45 percent of this sample, or a total of 946 women, 504 of whom had physical disabilities and 442 who did not have disabilities.
We collected an enormous volume of information in this study. The survey included 311 questions with more than a thousand variables, yielding more than a million bits of data. For the last few years, we've been analyzing these data in each of the six domains we identified early in the study. Thanks to supplemental funding through the Centers for Disease Control and Prevention, we were able to spend an additional year conducting further analysis of our data on health issues for women with physical disabilities.
The findings of this study will, we hope, lay the foundation for further research on issues of concern to women with disabilities, and empower advocates to press for change in service systems so that they can more effectively assist women with disabilities to achieve independence, equality, and quality of life. If this report peaks your interest, we invite you to contact our office or dial up our World Wide Web page for more detailed information.
Margaret A. Nosek, Ph.D.
