Background

History of Research on Women with Disabilities

The Role of the Center for Research on Women with Disabilities

Recommendations from the 1994 NIH conference on Women with Disabilities

Description of the Population

There are 28 million women with disabilities in the U.S., constituting 21% of the population of women, according to the 1995 Survey of Income and Program Participation.¹ According to the 1994-1995 National Health Interview Survey conducted by the National Center for Health Statistics,² functional limitations affect women more severely as they age, increasing from 6% of women ages 18-44 to 40% of women age 65 or older. Women with three or more functional limitations are significantly more likely than women with no limitations to live alone, be divorced, have less education, be unemployed, and live in poverty. It has been well documented in the literature that population groups who experience the worst health status are those groups who have the highest poverty rates and the least amount of education. In terms of health care needs, women with functional limitations, especially younger women, are more likely to see a specialist, delay getting care due to cost, and be unable to get care for general medical conditions or surgery, mental health needs, dental needs, prescription medicine, or eyeglasses. Although hypertension, depression, stress, smoking, and being overweight are concerns for women in general, these problems are significantly greater among women with functional limitations. Nearly a third of women with three or more functional limitations rate their overall health as poor compared to less than 1% of women with no limitations. These dramatic statistics warrant expanded research and dissemination of findings on improving the health of women with disabilities.

History of Research on Women with Disabilities

The study of disability and rehabilitation has made its most significant advances during and after periods of war and, therefore, has been primarily concerned with the health and vocational problems of men. Guidelines for clinical treatment and interventions for reintegration into society have been developed for the most part based on the needs of men with spinal cord injury, amputation, and other adventitious musculoskeletal problems. For issues related to congenital disabling conditions, such as cerebral palsy, spina bifida, or neuromuscular disorders, and adult-onset chronic disabling conditions, such as joint and connective tissue disorders (arthritis, lupus) or multiple sclerosis, gender has rarely been considered important in intervention development. Interest in examining the needs of women with disabilities took an early focus on sexuality in response to the overwhelming preponderance of literature on the fertility and erectile dysfunction of spinal cord injured men.^3-9 When the sexuality of women with disabilities was studied, it was often narrowly defined as fertility, pregnancy, labor, and delivery of babies^5,8,10 as demonstrated by the number of studies on menstruation, fertility, pregnancy, and childbirth,^11-23 and women's self-reports that if their fertility wasn't compromised, they were made to feel as if no other aspects of sexuality should matter.²⁴ In one of the few early studies dealing specifically with sexual issues of women with spinal cord injuries, Charlifue and co-workers⁵ discovered that 69% of 231 women surveyed were satisfied with their post-injury sexual experiences, but were not content with sexual information provided during rehabilitation, feeling a need for more literature, counseling, and peer support. In another early study of gynecologic health care of women with disabilities, 91% had received breast and pelvic examinations and Papanicolaou smears, but only 19% had received counseling about sexuality; women with paralysis, impaired motor function, or obvious physical deformity were rarely offered contraceptive information or methods.²⁵ Only one-third believed their health care provider knew enough about their disability to provide adequate sexual information.

The study of health and wellness in the context of disability for women is a relatively new avenue of investigation, opened only after challenging entrenched stereotypes that disability is the opposite of health and that gender is far less important than the characteristics of the disability itself. Interest in research on women with disabilities followed a decade after the rise of interest in women's health and interest in wellness and the prevention of secondary conditions in people with disabilities after the deficit in the literature was noted by several researchers and feminist disability rights activists.^26-30 According to Altman,³¹ before 1990, there was only one publication on demographics about women with disabilities using national population-based data ³² and a few on access to benefits by women with disabilities.^33-35 Although information about women with disabilities could be found in publications about people with disabilities in general,^1,36-40 Altman³¹ was the first to examine statistical information about risks, causes, and consequences of disability among women at the national level. The only other similar effort to date compiled data from multiple national statistical data sources and individual research studies on the demographics, education, employment, and health status of girls and women with disabilities.⁴¹

Initiatives by Federal Funding Agencies

In 1991, the new National Center for Medical Rehabilitation Research (NCMRR) at NIH sponsored a conference on reproductive functioning in people with disabilities.⁴² From this conference emerged a request for proposals on the same topic. Two projects were funded that focused on women, "Psychosocial Behaviors among Women with Disabilities" at Baylor College of Medicine (Margaret Nosek, PhD, Principal Investigator) and “Physiologic Effects of Spinal Cord Injury on Women” at Kessler Rehabilitation Institute (Marca Sipski, MD, Principal Investigator). As follow up and in recognition of the serious gap in the literature on women with disabilities, NIH sponsored the 1994 conference, "The Health of Women with Physical Disabilities: Setting a Research Agenda for the '90's". This conference addressed four areas of interest, 1) sexuality and reproductive health, 2) stress and well-being, 3) managing bowel and bladder function, and 4) physical fitness and well-being.⁴³ For a listing of the conference recommendations, please click here.

In 1996, the NIH NCMRR issued a request for applications to develop and test health promotion interventions for women with physical disabilities. The five projects that were funded at Baylor College of Medicine (CROWD), University of Michigan, Temple University, University of Texas at Austin, and Medical College of Georgia examined interventions for women with multiple sclerosis, postpolio, sickle cell anemia, and a broad spectrum of other physical impairments. In the same year, the Centers for Disease Control and Prevention (CDC) Office on Disability and Health (www.cdc.gov/ncbddd/dh/default.htm) funded three projects to examine secondary conditions in women with disabilities at University of Kansas, SUNY Syracuse, and Baylor College of Medicine (CROWD). The National Institute on Disability and Rehabilitation Research has funded two projects focusing on women at Baylor College of Medicine (CROWD) and Children's Hospital in Boston. CDC sponsored another national conference on the health of women with disabilities in 1999, with the primary purpose of information sharing among researchers, service providers, and women with disabilities. Although this history of funding and conferences indicates interest on the part of the major federal agencies supporting disability research, it does not represent a systematic approach to the substantial health problems faced by women with disabilities.

In the past 10 years, the National Institute on Disability and Rehabilitation Research (NIDRR, a component of the Office of Special Education and Rehabilitative Services in the US Department of Education, www.ed.gov/offices/OSERS/NIDRR) has supported several research projects specifically on women with disabilities. The first of these projects documented the needs of women with disabilities in accessing services from mainstream social service programs such as personal assistant services. Another focused on working together to improving the economic status of working women with disabilities to training physicians in major health issues of women with disabilities. Among the health-related projects are: conditioning exercise for osteoporosis prevention and treatment in women with rheumatoid arthritis; cardiovascular disease (CVD) in women with spinal cord injury (SCI); examining the effectiveness of a psycho-educational, peer-facilitated workshop intervention designed to enhance the self-esteem of women with physical disabilities; and health promotion for women aging with disabilities. The most recent funded project on Stress and coping over the life course, describes the challenges to independent living faced by women with SCI.

The Role of the Center for Research on Women with Disabilities

CROWD has been coordinating teleconferences since July 2000 with investigators from the studies mentioned above and others who have been conducting research on the health and wellness of women with disabilities to discuss the need for a process to develop a research agenda in this area that could guide the development of the field and be endorsed and funded by the Centers for Disease Control and Prevention, National Institutes of Health, Agency for Healthcare Research and Quality, and the National Institute on Disability and Rehabilitation Research. This core planning group (see Appendix A for a list of members) identified the need for a symposium and follow up documentation that would continue the flow of progress from previous conferences and ongoing research.

To conduct this symposium, CROWD has obtained funding from the Centers for Disease Control and Prevention, the Houston Endowment, and the Ethel Louise Armstrong Foundation. The symposium, which took place in June, 2003, brought together researchers and representatives of the population of women with disabilities to discuss research findings to date and develop recommendations for priorities in research, training, and professional and consumer education on the health of women with disabilities.

The proceedings of this Symposium will be published with the support of a grant from the National Library of Medicine, a part of the National Institutes of Health. All of the material in this web site plus the recommendations for research developed by the participants at the Symposium and comments on these recommendations from the field will be included in this publication.

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