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Article Excerpt
Recently programs and research have addressed the issues of abuse among women with disabilities, (Curry, Powers, Oschwald, & Saxton, 2004; Nosek, Howland, & Young, 1997; Curry, & Navarro, 2002; Saxton, 2002.) In contrast, there have been virtually no efforts aimed at addressing the issues of abuse among men with disabilities. This study attempts to address that gap, and additionally reveals a great deal about disabled men's relationship to disability, to personal assistance services (PAS) and to men's orientation to assistance, control, vulnerability, disclosure and family relationships.
Abuse and Disability
The initial research on abuse of disabled persons was conducted within institutional settings and focused on the experiences of sexual abuse perpetrated against children and adults with developmental disabilities. Sobsey and Doe (1991) were among the first to report the patterns of sexual abuse and assault among institutionalized children and adults with developmental disabilities. In their review of 162 reported cases of sexual abuse in North America, the majority of victims were under 20, female, and the majority of offenders were male. Most of the victims had a relationship with their perpetrator, including family members, acquaintances, paid service providers, or a relationship that was specifically related to their disability, such as personal care assistants, psychiatrists and residential care staff.
More recently, studies have focused on the abuse experiences of women with physical disabilities and physical and cognitive disabilities living in the community. In their national survey, Young, Nosek, Howland, Chanpong, and Rintala (1997) found similar levels of overall abuse among women with and without disabilities; however women with disabilities reported significantly longer durations of physical and sexual abuse when compared to non-disabled women and they were more likely to have been abused within the past year. Another survey of 200 women with physical disabilities or a combination of physical and cognitive disabilities revealed that 67% had experienced physical abuse and 53% had experienced sexual abuse at some point in their lives (Powers, et al., 2002.) These rates approximately double the national rates of women without disabilities (National Research Council, 1996).
Personal Assistance Provider Abuse
Approximately 10 million people use personal assistance services, which are defined as "One or more persons assisting another person with tasks which the individual would typically do if they did not have a disability" (Litvak, 1991). The majority of community-based PAS services are provided by unpaid, informal providers (79%), while approximately 11% of users receive a combination of paid, formal services and informal services, and only about 10% receive exclusively formal, paid services (Rutgers University Bureau of Economic Research, 1990). Access to quality PAS is a critical requirement for personal independence and community living (Litvak & Kennedy, 1991). When PAS abuse occurs, disabled people's abilities to engage in daily life activities are compromised along with their personal health and safety.
The seriousness of PAS abuse has been primarily documented for disabled women (Curry, Powers, Oschwald, & Saxton, 2004; Saxton, 2001; Powers et al., 2002). Qualitatively, women have described numerous forms of PAS abuse, including physical, sexual and financial abuse, medication manipulation, equipment disablement or destruction, neglecting to provide needed services, abuse of children and pets, and devastating verbal abuse (Saxton et al., 2001). Women in the same study also described numerous barriers to addressing abuse, including difficulty recognizing it as abuse, shame, lack of emergency back-up services, fear of institutionalization or loss of their children if they reported the abuse, and lack of accessible abuse resources such as crisis services, support groups and domestic violence shelters. These same women also identified strategies to managing PAS abuse, such as learning about domestic violence resources and approaches for hiring, training and supervising PAS providers; having access to emergency and back-up PAS; and participating in support groups. A subsequent survey of 200 women PAS users, Powers et al. (2002) supported these findings and substantiated the negative impact of PAS abuse on disabled women's lives. PAS abuse prevented 29% of the participants from being employed; 64% from taking care of their health; and 61% from living independently.
Violence Against Men with Disabilities
Abuse and violence directed at men who use PAS providers has been neglected in research. A substantial literature on gender has explored the social and emotional experience of maleness and the impact of masculine stereotyping on the lives of men (Connell, 1995, Kimmel, 1996, Pease, 2002; Whitehead, 2002) Cultural assumptions tend to regard men as perpetrators of domestic violence and abuse, rather than as victims. Several studies examining adult protective services (APS) data suggest that men with disabilities are less likely to be abused than women with disabilities (Allington, 1992; Turk & Brown, 1993). But these findings may under-represent men with disabilities who are often reluctant to report abuse to APS. In another study of physical abuse, the ratio of male to female victims was found to be a reverse of expectations: 56% males reported experiencing abuse compared to 44% females (Marchetti & McCartney, 1990). In their review of 85 confirmed cases of sexual abuse among persons living in staffed housing, Brown, Stein and Turk (1995) found that men with developmental disabilities were equally likely as women with developmental disabilities to experience abuse. Sullivan, et al (1991) note that males with disabilities constitute a larger percentage of victims of violence and abuse than would be expected from studies of the general population. This reveals a possibly hidden but dangerous misassumption that men with disabilities are less vulnerable to mistreatment by virtue of their maleness, ignoring the significant change in power dynamics inherent in the disability experience, regardless of gender. As a result, men with disabilities will continue to be left out of services and resources to challenge abuse, and the abuse will continue.
As women with disabilities who use PAS appear to be at additional risk, it seems logical that the same would be true for men. In the only community-based study of PAS abuse that included disabled male participants, Ulicny, White, Bradford and Mathews (1990) surveyed 91 male and female users of 15 randomly selected Independent Living Center attendant services programs. Participants were asked to report their frequency of exploitation by PAS providers, their responses to previous exploitation, and their engagement in behaviors hypothesized to be related to theft by PAS providers, such as letting their PAS provider buy medication, charge items to their credit card or have a key to their home. Overall, 40% reported financial abuse and 10% reported physical abuse, with all participants who reported physical abuse also reporting experiencing financial abuse. Twenty-five percent they did not confront the PAS provider because of fear of retribution and 19% overlooked the exploitation to avoid having to locate a new provider. Commonly mentioned strategies to prevent theft included keeping valuables locked up, carefully screening PAS provider applicants, regularly monitoring medications and bank accounts, and signing their own checks. The study did not differentially examine the experiences of men and women PAS users or additional forms of abuse.
The purpose of this qualitative study was to investigate the abuse experiences arising in the helping relationships between providers and consumers of PAS. To this end the study included men who represent the population of users of PAS: those with severe physical disabilities including men with both physical and cognitive disabilities. The intent was to explore the fullest range of abuse experiences in PAS. Specifically, we sought to explore the nature of abuse perpetrated by formal and informal PAS providers, and to investigate the disabled men's perceptions about the experience and the disclosure of abuse, and barriers and strategies for men in identifying and addressing abuse.
Method
Participants
This study recruited 78 men with physical disabilities or physical and cognitive disabilities who lived in non-congregate residences in the community and identified themselves as regular users of PAS provided by family members, friends, or paid personnel. Although the study focused on investigating PAS abuse, men's experiences of abuse were not a criterion for participation in the study. Rather, we were interested in understanding PAS abuse from a broad sample of male PAS users who would not be required to self-assess their exposure to abuse as a prerequisite for volunteering for the study.
Participants were recruited through Independent Living Centers, self-advocacy groups, and disability service organizations and agencies in the Portland, Oregon and San Francisco Bay areas. Those who indicated interest in participating were screened to verify that they (a) experienced physical or physical and cognitive disabilities, (b) were 18...
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