We're All Little John Waynes: A Study of Disabled Men's Experience of Abuse by Personal Assistants

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. …