The mission of the Center for Research on Women with Disabilities is to promote, develop, and disseminate information to improve the health and expand the life choices of women with disabilities.
CROWD was established in 1993 in the Department of Physical Medicine and Rehabilitation at Baylor College of Medicine, under the direction of Margaret A. Nosek, Ph.D. Its formation was inspired by the outpouring of support from women with disabilities around the nation in response to the announcement of the team's first federally-funded study of women's issues. The National Study of Women with Physical Disabilities was funded by the National Institutes of Health in 1992 to examine sexuality and associated concerns in this population. After completion of qualitative interview of 31 women and a survey of nearly 1,000 women (about half with disabilities and half without disabilities), data analysis revealed major new findings in five areas:
- Dissatisfaction with sexual activities
- Difficulties in establishing intimate relationships
- Low self-esteem
- Very high rates of emotional, physical, sexual, and disability-related abuse
- Pervasive problems with obtaining appropriate reproductive health care
Sexuality and Reproductive Health
Research on sexuality and reproductive health in women with disabilities lags far behind studies of men, particularly those with spinal cord injury. Contrary to the general stereotype, we found that nearly the entire sample of women with disabilities were sexually active at some time in their lives.
Although women with disabilities had the same amount of sexual desire as the comparison group of women without disabilities, they were significantly less satisfied with their level of sexual activity. They listed a number of problems that interfered with sexual functioning, such as weakness, vaginal dryness, joint pain, and spasticity, but a more important factor underlying their dissatisfaction was difficulty establishing intimate relationships. Issues of concern in reproductive health were high rates of hysterectomy, many for non-medical reasons, difficulty finding a knowledgeable doctor to handle their pregnancy, and unresolved questions about breast cancer and menopause.
The powerful role of the mind in maintaining wellness as a woman with a disability was strongly evident in the National Study. We found that severity of functional limitations was not always the main factor in determining satisfaction with relationships, sense of self. More important was the degree to which the participants felt they were a person of value.
In 1998, when Rosemary Hughes, Ph.D., a psychologist with a disability specializing in wellness, joined our team, we launched a series of intervention studies. Under her expert direction, and with funding from the National Institute on Disability and Rehabilitation Research and the National Institutes of Health, we have gathered preliminary evidence that our psycho-educational workshops can help improve problems with self-esteem, depression, and stress among women with physical disabilities.
The Centers for Disease Control and Prevention and the National Institutes of Health enabled us to continue analyzing our data from the National Study for an additional year. Our focus was on examining the health promoting behaviors of our participants and determining disparities in certain health problems among women with physical disabilities compared to women without disabilities.
We found serious problems with overweight and obesity, smoking, and lack of physical activity. Women with disabilities had substantially higher rates of major depression, chronic urinary tract infections, depression, osteoporosis, than the non-disabled comparison group. This gave us the grounding to pursue the question of what factors help women with disabilities maintain good health. Our research showed that psychosocial factors, such as believing that you have the power to change your behaviors and having social support, were strongly associated with better health promoting behaviors and better health. Environmental factors also played an important role.
The health promotion workshop we developed showed evidence of having a positive effect on the health of participants with disabilities and also those who were aging with long-term disabilities.
With our preliminary evidence of health disparities in women with physical disabilities compared to women without disabilities we began to look deeper into this poorly understood problem. Thanks again to a major grant from the Centers for Disease Control and Prevention, we were able to recruit 443 women from the Harris County Hospital District plus private outpatient clinics and interview them seven times over the course of one year to find out about their health problems and use of health care services.
Our particular focus was on depression and its association with other secondary conditions, and the health care cost incurred in treating these conditions.
View additional information from our work related to secondary conditions and women with physical disabilities.
Access to Health Care
One of the loudest outcries we heard from participants in our National Study was dissatisfaction with the health care services that were available to them. Problems stemmed not only from inaccessible doctors' offices and unusable equipment (exam tables, mammography machines, etc.), but more importantly from the lack of knowledge among medical professionals about how disability might affect their health.
To address these problems, we published articles on the health care needs of women with disabilities and developed a continuing medical education curriculum for primary care physicians, obstetricians/gynecologists, and physician assistants.
Violence against Women with Disabilities
There were extremely high rates of emotional, physical, and sexual abuse reported by both the women with disabilities and women without disabilities. We also identified certain types of abuse that were only possible because of the woman's disability, for example, refusing to help her go to the bathroom or taking her wheelchair away from her.
We pursued this line of research in several subsequent grants, examining in more depth the prevalence of abuse, factors contributing to greater risk for abuse, and interventions to help women with disabilities increase their level of safety.
Setting the Research Agenda
In June 2003 we convened a symposium of researchers, clinicians, and advocates entitled, "Improving the Health and Wellness of Women with Disabilities". Discussions focused on gaps in current research and practice, and identified high priority topics in need of further attention. An executive summary of the symposium is available with a list of participants and recommendations proposed.