Carol A. Howland

National Study of Women with Physical Disabilities: Final Report

The final report of the National Study on Women with Disabilities provides an overview of the research conducted from 1992 to 1996 at the Center for Research on Women with Disabilities. The report addresses the methodologies used in the recruitment of women and reviews the various analyses conducted on the data. In addition, the report provides a discussion of recruitment techniques used for nondisabled women and the analysis used for this population as well. It provides a summary of findings in the areas of sense of self, relationships, information about sexuality, sexual functioning, pregnancy, sexually transmitted diseases, abuse, chronic conditions, health maintenance behaviors, gynecologic health, and health care utilization.

Prevalence of abuse of women with physical disabilities

OBJECTIVE Emotional, physical, and sexual abuse of women with physical disabilities is a problem largely unrecognized by rehabilitation service providers. This article documents the prevalence of abuse of women with physical disabilities compared to women without physical disabilities. DESIGN Case-comparison study using written survey. Data were analyzed using chi 2 analyses and the Mann-Whitney U Wilcoxon rank sum W tests. SETTING General community. PARTICIPANTS A sample of 860 women, 439 with physical disabilities and 421 without physical disabilities, was compiled from women responding to a national sexuality survey. MAIN OUTCOME MEASURES The women were asked if they had ever experienced emotional, physical, or sexual abuse. If they answered yes, they were asked to identify the perpetrator(s) of the abuse and when the abuse began and ended. RESULTS Sixty-two percent of both groups of women had experienced some type of abuse at some point in their lives. Of women who had experienced abuse, half of each group had experienced physical or sexual abuse. Husbands or live-in partners were the most common perpetrators of emotional or physical abuse for both groups. Male strangers were the most common perpetrators of sexual abuse for both groups. Women with physical disabilities also were more likely to be abused by their attendants and by health care providers. Thirteen percent of women with physical disabilities described experiencing physical or sexual abuse in the past year. CONCLUSIONS Women with physical disabilities appear to be at risk for emotional, physical, and sexual abuse to the same extent as women without physical disabilities. Prevalence of abuse by husbands or live-in partners in this study is similar to estimates of lifetime occurrence of domestic violence for women living in the United States. Women with physical disabilities are more at risk for abuse by attendants or health care providers. They are also more likely to experience a longer duration of abuse than women without physical disabilities.

Breast and cervical cancer screening among women with physical disabilities

OBJECTIVE This article reports findings from the National Study of Women with Physical Disabilities about rates of screening for breast and cervical cancer and factors associated with regular screening in a large sample of women with a variety of physical disabilities and a comparison group of women without disabilities. DESIGN Case-comparison study using written survey. Data were analyzed using measures of central tendency, chi 2 analysis, logistic regression, and risk using odds ratios. SETTING General community. PARTICIPANTS A total of 843 women, 450 with disabilities and 393 of their able-bodied friends, aged 18 to 65, who completed the written questionnaire. The most common primary disability type was spinal cord injury (26%), followed by polio (18%), neuromuscular disorders (12%), cerebral palsy (10%), multiple sclerosis (10%), and joint and connective tissue disorders (8%). Twenty-two percent had severe functional limitations, 52% had moderate disabilities, and 26% had mild disabilities. MAIN OUTCOME MEASURES Outcomes were measured in terms of frequency of pelvic exams and mammograms. RESULTS Women with disabilities tend to be less likely than women without disabilities to receive pelvic exams on a regular basis, and women with more severe functional limitations are significantly less likely to do so. No significant difference was found between women with and without disabilities, regardless of severity of functional limitation, in receiving mammograms within the past 2 years. Perceived control emerged as a significant enhancement factor for mammograms and marginally for pelvic exams. Severity of disability was a significant risk factor for noncompliance with recommended pelvic exams, but not mammograms. Race was a significant risk factor for not receiving pelvic exams, but not mammograms. Household income and age did not reach significance as risk factors in either analysis. CONCLUSIONS Women with physical disabilities are at a higher risk for delayed diagnosis of breast and cervical cancer, primarily for reasons of environmental, attitudinal, and information barriers. Future research should focus on the subpopulations that were not surveyed adequately in this study, women with disabilities who have low levels of education or income, or who are of minority status.

Vulnerabilities for abuse among women with disabilities

Research findings reveal that women with disabilities experience rates of emotional, physical, and sexual abuse that are comparable to, if not greater than, women without disabilities. Disability specialists propose that women with disabilities experience specific vulnerabilities to abuse. The question in the present study was, “What types of abuse experienced by women with physical disabilities are directly related to their disability?” Of the 504 women with disabilities who responded to a questionnaire assessing sexuality and relationships, 181 of the women completed open-ended questions about abuse. Using qualitative techniques, we analyzed their responses and identified disability-specific types of emotional, physical, and sexual abuse. Certain disability-related settings increased vulnerability for abuse. The need for personal assistance with daily living created additional vulnerability. We conclude that disability is not a protective factor against abuse; indeed, it often serves to reduce a womans emotional and physical defenses. These findings indicate a need for the development of disability-sensitive abuse screening instruments, and development and testing of interventions to assist women with disabilities in recognizing abuse, protecting themselves in abusive situations, and removing themselves from potentially abusive relationships and situations.

The Investigation of Abuse and Women With Disabilities

This article delineates issues that should be considered by investigators endeavoring to conduct empirically sound research on abuse and women with disabilities. These issues include (a) incorporating in the research design variables that assess increased vulnerability; (b) using literature-based definitions that distinguish emotional, physical, sexual, and disability-related abuse; (c) using population-based sampling methodologies; (d) securing informed consent; (e) maintaining confidentiality; (f) installing safety measures to protect study participants and project staff from retaliation; (g) making special efforts to include women with disabilities from minority backgrounds; (h) using appropriate, validated, disability-sensitive screening instruments; (i) understanding the legal requirements for reporting abusive incidents; (j) implementing abuse studies in clinical settings; and (k) including formative and summative evaluations in outcome studies of abuse interventions. To increase the capacity of battered womens programs to serve women with disabilities, considerably more needs to be known about interventions that are most effective for this population.

Abuse of Women With Disabilities Policy Implications

According to the National Study of Women With Physical Disabilities, the prevalence of abuse was not significantly different between women with and without disabilities. Women with physical disabilities, however, reported significantly longer durations of abuse. Unique vulnerabilities to abuse experienced by women with disabilities include social stereotypes of asexuality and passivity, lack of adaptive equipment, inaccessible home and community environments, increased exposure to medical and institutional settings, dependence on perpetrators for personal assistance, and lack of employment options. In order to enable the identification of women with disabilities who are in abusive situations and their referral to appropriate community services, policy changes are needed to increase training for all types of service providers in abuse interventions, to improve architectural and attitudinal accessibility of programs for battered women, to increase the responsiveness of adult protective services, to increase options for personal assistance, to expand the availability of affordable and accessible legal services, and to improve communication among community services.

Sexual functioning among women with physical disabilities

OBJECTIVE Three a priori hypotheses were tested: (1) There are significant differences in sociosexual behaviors of women with physical disabilities compared with women without disabilities; (2) the sexual functioning of women with disabilities is significantly related to age at onset of disability; (3) psychological factors explain more of the variance in the sexual functioning of women with physical disabilities than do disability, social and environmental factors. DESIGN Case-comparison study using written survey. SETTING General community. PARTICIPANTS The questionnaire was mailed to 1,150 women with physical disabilities who were recruited as volunteers or through independent living centers. Each woman gave a second copy of the questionnaire to an able-bodied female friend, which comprised the comparison group. The response rate was 45%, with 475 cases and 425 comparisons eligible to participate. The most common disability type was spinal cord injury (24%), followed by polio (18%), muscular dystrophy (11%), cerebral palsy (11%), multiple sclerosis (10%), joint disorders (7%), and skeletal abnormalities (5%). INTERVENTIONS None. MAIN OUTCOME MEASURES Sexual-functioning, consisting of four factors: (1) sexual desire, (2) sexual activity, (3) sexual response, (4) sexual satisfaction. RESULTS Highly significant differences were found in level of sexual activity (p = .000001), response (p = .000009), and satisfaction (p=.000001) between women with and without disabilities. No significant differences were found between groups on sexual desire. Severity of disability was not significantly related to level of sexual activity. CONCLUSIONS Psychological and social factors exert a strong impact on the sexual functioning of women with physical disabilities. Further investigations is needed of the effect of social environment on development of self-esteem and sexual self-image, and how these influences affect levels of sexual functioning in women with physical disabilities.

Dating Issues for Women with Physical Disabilities

A study of dating issues for 250 single women with physical disabilities and 180 single women without disabilities was undertaken to determine (a) differences between women with and without disabilities and (b) predictors of dating outcomes for women with disabilities. A survey was sent to a national sample of women with disabilities along with a similar survey to give to a female friend without a disability. Dating outcomes included (a) satisfaction with dating frequency, (b) perceived constraints on attracting partners, (c) perceived personal barriers to dating, (d) perceived societal barriers to dating, and (e) perceived communication problems. Women with disabilities were disadvantaged on all but (e). Between 21% and 47% of the variance in the outcomes was accounted for in multiple regression analyses. Potential interventions suggested by the findings are discussed.

Dating Behaviors of Women with Physical Disabilities

According to societal stereotypes, women with physical disabilities are asexual and therefore do not date. Another stereotype, and a fear of many women with disabilities, is that no one will want to date them because they have a disability. Consequently, little is known about their dating behaviors. Qualitative research methods were used to code and analyze 31 in-depth interviews of women with a variety of disabling conditions. Themes emerging from their stories indicated that the timing of onset of disability, and the response to disability of family, friends, and society in general, were critical in establishing patterns of dating behavior for women with physical disabilities.