Executive Summary

Center for Research on Women with Disabilities
Department of Physical Medicine and Rehabilitation
Baylor College of Medicine

Research Team

Margaret A. Nosek, Ph.D., Principal Investigator
Diana H. Rintala, Ph.D.
Mary Ellen Young, Ph.D.
Catherine C. Foley, Ph.D.
Carol Howland

Gail F. Chanpong, M.S.
Don Rossi, M.S.
Jama Bennett, M.Ed.
Kathy Meroney, B.A.

Adjunct Research Team Members:
Mary Ann Board, MSW
Fae Garden, M,D.
Karen Hart, Ph.D.
Lila Laux, Ph.D.

Research Study

"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." - A 36-year-old polio survivor with scoliosis

I know the feeling of being anxious to form relationships very well, 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 of the 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.

Psychosocial Behaviors of Women with Physical Disabilities

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
  5. Abuse
  6. 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.

For copies of articles published in academic journals and other materials presenting results of this research, please contact the Center for Research on Women with Disabilities or click here.

Major Findings

1. Women with disabilities have limited opportunities to establish romantic relationships.

Compared to women without disabilities, women with disabilities were less satisfied with how often they date and perceived more constraints on attracting dating partners.

Even when women with disabilities were outgoing with strong social skills and many friends, their friendships were less likely to evolve into romantic relationships than for able-bodied women.

The large majority (87 percent) of the women with disabilities had had at least one serious romantic relationship or marriage. Fifty-two percent were involved in a serious relationship at the time of the study versus 64 percent of the women without disabilities.

Among the women with disabilities who were not married or in a serious relationship at the time of the study, 42 percent said it was because no one had asked them. Only 27 percent of women without disabilities listed that as a reason for not being in a relationship.

More than half of the women with disabilities believed that disability was not a major cause of the ending of a marriage or other serious relationship.

Only 38 percent of the women with disabilities in this sample had borne children compared to 51 percent of women without disabilities.

Women with disabilities were significantly more likely than those without disabilities to stay in a bad marriage for fear of losing custody of their children.

2. Self-esteem in women with physical disabilities is more strongly influenced by social and environmental factors than by the fact of having a disability.

More than three-quarters of the women with disabilities had high self-esteem and a positive body image. Whether the woman had a severe disability or a mild disability, incurred disability earlier or later in life, or had ever been in special education didn't make much difference in self-esteem.

Women who were working, who were in a serious romantic relationship, or who had never experienced physical or sexual abuse reported high self-esteem, whether or not they had a disability. Among women who were not working, not in a serious romantic relationship, or who had experienced physical or sexual abuse, the women with disabilities had much lower self-esteem than the women without disabilities.

3. Abuse is a very serious problem for women with disabilities. They have even fewer options for escaping or resolving the abuse than women in general.

The same percentage (62 percent) of women with and without disabilities had experienced emotional, physical, or sexual abuse, but women with disabilities experienced abuse for longer periods of time.

In addition to the types of abuse experienced by all women, women with disabilities were sometimes abused by withholding needed orthotic equipment (wheelchairs, braces), medications, transportation, or essential assistance with personal tasks, such as dressing or getting out of bed. Women with disabilities face serious barriers to accessing existing programs to help women remove violence from their lives.

4. Women with physical disabilities have as much sexual desire as women in general; however, they do not have as much opportunity for sexual activity.

Ninety-four percent of the women with disabilities had had sexual activity with a partner in their lifetime. Forty-nine percent were sexually active at the time of the study, compared to 61 percent of women without disabilities.

Forty-one percent of the women with disabilities believed that they did not have adequate information about how their disability affects their sexual functioning.

Women with disabilities reported significantly lower levels of sexual activity, sexual response, and satisfaction with their sex lives.

Level of sexual activity was not significantly related to severity of disability.

5. Women with physical disabilities encounter serious barriers to receiving general and reproductive health care.

Thirty-one percent of the women with physical disabilities who participated in this study were refused care by a physician because of their disability.

Women with physical disabilities reported considerable difficulty locating physicians who were knowledgeable about their disability to help them manage their pregnancy.

More women with physical disabilities reported chronic urinary tract infections, heart disease, depression, and osteoporosis at younger ages than the comparison group of women without disabilities.

There was a much higher rate of use of public health clinics, specialists, and emergency departments among women with disabilities compared to women without disabilities.

View the full report of findings from this study, or see:
Nosek, M. A., Howland, C. A., Rintala, D. H., Young, M. E., Chanpong, G. F. (2001) National Study of Women with Physical Disabilities: Final Report. Sexuality and Disability, 19 (1) 5-39.