Margaret A. Nosek

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.

SELF-ESTEEM AND WOMEN WITH DISABILITIES

This study examines the sense of self of women with physical disabilities in terms of self-esteem, self-cognition (perceptions of how others see them), and social isolation. It was hypothesized that these variables mediate the relation of precursor variables (age, education, severity of disability, and childhood experiences, including overprotection, familial affection, and school environment) and outcomes (intimacy, employment, and health promoting behaviors). Data were gathered from a sample of 881 community-dwelling women in the USA, 475 with a variety of mild to severe physical disabilities, and 406 without disabilities. Correlation analyses indicated that the women with disabilities had significantly lower self-cognition and self-esteem, and greater social isolation than the women without disabilities, as well as significantly less education, more overprotection during childhood, poorer quality of intimate relationships, and lower rates of salaried employment. Path analysis indicated that each of the sense of self mediators was significantly related to the outcome of intimacy, that both social isolation and self-esteem were significantly related to health promoting behaviors, and that only self-esteem was significantly related to employment. Respondents who were older, less disabled, less educated, less over-protected, and had more affection shown in the home tended to feel that others saw them more positively. Women with positive school environments, less over-protection, and more affection in the home experienced less social isolation; age, education, and disability severity were not significantly related to social isolation. Older respondents with less disability, a more positive school environment, less over-protection, and more affection in the home tended to have greater self-esteem; education was not significantly related to self-esteem. Older respondents tended to report less intimacy. Younger, more educated, and less disabled respondents were significantly more likely to be employed. More highly educated respondents reported engaging in more health promoting behaviors.

Abuse Assessment Screen-Disability (AAS-D): Measuring Frequency, Type, and Perpetrator of Abuse toward Women with Physical Disabilities

An interview questionnaire was presented to a multiethnic sample of 511 women, age 18-64 years, at public and private specialty clinics to determine the frequency, type, and perpetrator of abuse toward women with physical disabilities. The four-question Abuse Assessment Screen-Disability (AAS-D) instrument detected a 9.8% prevalence (50 of 511) of abuse during the previous 12 months. Using two standard physical and sexual assault questions, 7.8% of the women (40 of 511) reported abuse. The two disability-related questions detected an additional 2.0% of the women (10 of 511) as abused. Women defining themselves as other than black, white, or Hispanic (i.e., Asian, mixed ethnic background) were more likely to report physical or sexual abuse or both, whereas disability-related abuse was reported almost exclusively by white women. The perpetrator of physical or sexual abuse was most likely to be an intimate partner. Disability-related abuse was attributed equally to an intimate partner, a care provider, or a health professional. This study concludes that both traditional abuse-focused questions and disability-specific questions are required to detect abuse toward women with physical disabilities.

Psychosocial Issues of Women with Physical Disabilities The Continuing Gender Debate

Rehabilitation and disability related research has only recently begun to examine the complex interaction of gender and disability. Women with disabilities experience the double impact of being female and disabled. As women, they have greater risks of psychosocial health problems than do men. As persons with disabilities, they may be even more vulnerable to these gender disparities; for example, compared to women in general, women with disabilities report higher rates of depression and stress. This article describes a new and promising body of research. We offer evidence that corrects any misunderstandings held by rehabilitation specialists that the psychosocial experiences of women with disabilities can be explained by research conducted on men with disabilities or women in general. Clinically and empirically based gender-driven recommendations are offered for research and practice.

Disability, Psychosocial, and Demographic Characteristics of Abused Women With Physical Disabilities

In a sample of 415 predominantly minority women with physical disabilities recruited from private and public specialty outpatient clinics, we examined experiences of physical, sexual, and disability-related abuse within the past year and its associations with demographic, disability, and psychosocial characteristics. Logistic regression analyses identified 27% of the variance and indicated that women with disabilities who were younger, more educated, less mobile, more socially isolated, and who had higher levels of depression may have a higher likelihood of having experienced abuse in the past year. This model correctly identified 84% of the abused women with disabilities. Questions of directionality, the role of disability, and validity testing are discussed.

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.