Section 7: Research Gaps and Topics for Further Investigation
This chartbook presents statistical information on women and girls with disability, based primarily on large national-level surveys. Other research studies have been conducted on the topics of gender and disability that are not included in the chartbook because they cannot be generalized to the national level. Until quite recently, research on disability focused more on commonalities among people with disability, rather than addressing gender-related differences (Fine & Asch, 1988). As a result, less is known about the unique characteristics and experiences of girls and women with disability. Clearly, the information presented here only begins to investigate issues of gender and disability. The material presented in this chartbook makes it clear that there is still much research to be done, and that there are many challenges facing women and girls with disabilities. These findings point to the need for more policy attention to the needs of girls and women who have a disability.
Below, we give examples of some of the gaps in research on girls and women with disabilities that are suggested by the chartbook findings and other studies.
Girls and young women: Relatively little has been written about the characteristics and experiences of girls and young women with disabilities. The chartbook raises a number of questions needing further investigation.
- Many fewer girls than boys receive special education services. It is not known whether this discrepancy is due to different prevalence rates or other eligibility factors. Are there girls who could profit from special education services who are being left out? Compared to boys, girls graduating from special education have lower rates of employment and post secondary training and education. In the most recent report to Congress on special education, these and other gender differences were mentioned as important topics needing further investigation (U.S. Department of Education, OSERS, 1998). We echo that recommendation.
- What are the reasons why girls receive SSI at lower rates than boys? The barriers that prevent girls with disabilities from receiving benefits must be identified. How can these disparities be remediated?
- Data presented in this chartbook indicate that women are less frequently represented in computer-related occupations. What can be done to prepare young women with disabilities for science, math and technology-related careers?
Adulthood: Gender inequalities in work, income, and benefits are central issues facing women with disabilities. The chartbook raises a number of research questions about women with disabilities and their participation in the labor force that must be answered with further research.
- Women with disabilities are doubly disadvantaged in the workplace, with lower labor force participation and lower income than other women as well as men with and without disabilities. How can these inequalities be remedied?
- Increased attention must be paid to the work patterns of women with disabilities over the life course and the relationship of those patterns to employment opportunities, income levels and related benefits.
- Is there a relationship between health, well-being and labor-force participation for women with disabilities?
- Chartbook findings reveal that fewer women than men receive services from Vocational Rehabilitation. Other writers have suggested that rehabilitation counselors may present different career paths to disabled women and men with similar aptitudes (Fine & Asch, 1988). Research is needed to investigate gender differences and suggest solutions to inequities.
Adult women with disabilities also face non-work-related challenges. The chartbook raises a number of research questions about other kinds of issues faced by women with disabilities during middle adulthood.
- Data show that women with activity limitations are less likely to be married and more likely to be widowed than other women and men with and without disabilities. This finding, however, is probably related to women's greater longevity. National survey research is needed to investigate patterns of family formation among younger women with disabilities, as well as to better understand the relationship between disability and widowhood in later life.
- National-level findings presented in the chartbook on screening for breast and cervical cancer need further investigation. For example, a study in a general community sample (Nosek & Howland, 1997) found that women with disabilities receive pelvic exams less frequently than women with no disabilities. The study concludes that future research on access to health care by women with disabilities should focus on women with low levels of education or income and those who are of minority status.
- A study conducted by the Center for Research on Women with Physical Disabilities suggests that women with disabilities may be more vulnerable to certain kinds of physical, sexual or emotional abuse than their peers with no disability (Nosek, Howland, Rintal, et al., 1997; Nosek, Howland, & Young, 1997; Young, Nosek, Howland, et al., 1997). The study, conducted in a community sample, found that women with physical disabilities experienced abuse for longer periods, were subject to withholding of needed equipment, medication or transportation, and were more likely to be abused by health care providers, attendants or strangers. Nationally representative survey research is needed to investigate these issues. What can be done to prevent abuse of women with disabilities and eliminate barriers to accessing abuse services? How are certain subgroups, such as women with developmental disabilities and mental illness affected by violence and abuse and what kinds of services would help?
- Data from the National Resource Center on Parents with Disabilities at Through the Looking Glass raises questions about parents with disabilities. What are the implications of omitting parenting from activities of daily living, particularly with regard to receiving personal assistance services? Public policy mechanisms for changing inequities must be identified.
Aging: Women, including those with disabilities, are living longer and healthier lives. However, older women with disabilities continue to face threats to their independence, multiple health conditions, increased health care needs and high medical expenses. The following questions represent some of the needs for research on older women with disabilities that are suggested by the research presented in this chartbook and by other studies on elderly women with disabilities:
- There is a particular need for studies of pain and coping with pain among older women. Studies estimate that 25% to 50% of community-dwelling older adults report chronic pain. The prevalence of pain among nursing home residents, mainly women, is estimated at 45% to 80% (Roberto, 1997). Future research, particularly longitudinal research, is needed to better understand the development of chronic pain among older women with disabilities. Research is also needed to improve the quality of life for older women with disabilities who experience pain.
- Women, including women with disabilities, frequently care for spouses or older relatives when they develop a chronic illness or disability. It is not known how many women with disabilities are themselves caregivers to other adults. Research is needed on this topic.
- The older population in this country is expected to become more ethnically diverse in the next 20 years, with particular growth among elder Hispanic and Asian-Americans (Wetle, 1997). Especially needed are studies on older women with disabilities, focusing on the special needs of minority women.
- In general, research is needed to identify services and resources for helping older women with disabilities to age in a way that maintains maximum health and independence.
Many important issues in gender and disability are relevant to girls and women across the entire lifecycle. Research from the Center on Emergent Disability suggests that women, given their higher rates of poverty, are disproportionately represented among emerging disabilities due to domestic violence, inadequate prenatal care, adolescent pregnancy, poor nutrition, and other factors (Center on Emergent Disability, 1997). Barriers to medical care also affect females with disability at all ages. More research is needed on availability, use and quality of health care for girls and women with disabilities. Research on minority girls and women with disabilities is especially vital as the population of the United States becomes more ethnically diverse. Many questions raised in the chartbook are left unanswered. We hope that the identification of gaps in knowledge will encourage research and public policy changes to address these issues that affect girls and women with disabilities across the life cycle.