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. 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 years of age or older, (c) lived in noncongregate housing in the community, and (d) used PAS at least three times per week.

Participants ranged in age from 20- 65 with a mean age of 45. Sixty-one percent of the participants were Caucasian,14% were African American, 4% were American Indian, 3% were Asian, and 2% were Latino. Fifty-four (69%) of the men reported that they experienced primary mobility disabilities, 13 (17%) of the men indicated they experienced primary cognitive disabilities, and 7 (9%) of the men indicated they had primary visual disabilities. Most men reported experiencing multiple disabilities including hearing loss and speech impairment.

All of the participants reported they received either Supplemental Security Income (SSI) and/or Social Security Disability Income (SSDI). Fourteen participants reported they received income from wages, while 44 reported they received supplemental private insurance, contributions from family, friends or church, or Veteran's benefits.

All of the participants used personal assistance services: Forty-eight (62%) received PAS from paid persons, 10 (13%) received PAS from unpaid persons and 20 (25%) received a combination of paid and unpaid PAS. Sixty-two participants (79%) received PAS from someone hired just to provide assistance, 29 (37%) received PAS from friends and 23 (29%) of the participants received PAS from family members. Forty-three (55%) of the men reported they used PAS several times a day, 14 (18%) used PAS one or two times per day, and 15 (19%) used PAS at least three times per week and 6 (8%) used PAS one or two times a week. Fifty-seven (73%) of the participants reported that they used PAS for personal care, 58 (74%) indicated that they used PAS to accomplish household chores and 42 (54%) reported that they used PAS for transportation.

Procedure

This qualitative study used focus groups as the primary method of data collection. Seventy-six men participated in focus groups and 2 men in individual interviews. Individual interviews were conducted by request to accommodate disability-related limitations or the participant's preference not to participate in a group discussion. To gain an understanding of the unique meanings and strategies identified by ethnically and culturally diverse men, homogeneous focus groups were conducted with African American and Latino participants. Limited numbers of participants and time constraints prevented us from organizing additional culturally homogeneous groups.

Written consent for participation in the study was obtained from each man prior to the beginning of the focus group or individual interview. Additional time was scheduled to review the written consent form carefully with participants who had cognitive disabilities. PAS was available on-site, and men's personal assistant providers were not present for the interviews.

Interview questions.

Similar to our earlier study of disabled women and PAS abuse (Saxton et al., 2001), interviews were organized around 5 broad research questions:

1. How is abuse by PAS providers defined?

2. To what extent does the definition of abuse vary as a function of whether the PAS provider is a family member or a paid provider?

3. What approaches could men or others use to promote abuse disclosure?

4. What barriers do men face in preventing or stopping PAS abuse?

5. What strategies can men or others use to assist men to stop or prevent PAS abuse?

Focus groups lasted from 60 minutes to two hours and involved three to eight men. Each focus group was conducted by two researchers, two of our co-researchers in California, and two in Oregon: One facilitated the discussion and the other functioned as a participant observer and note taker. One of the interviewers was female and one was male. Most participants indicated that they did not have a preference for the gender of the interviewer and none indicated they wanted to talk only with a man. Individual interviews lasted approximately one hour and were conducted by one member of the research team. Each of the researchers were experienced in clinical interview techniques and prior to beginning the study, rehearsals were conducted to review strategies for building rapport with the respondents and asking open-ended follow-up questions. Because our researchers anticipated that some participants, particularly those with cognitive disabilities, might have difficulty with open-ended questions, various response facilitators were identified and methods were rehearsed for introducing them. For example, if a participant was unable to respond to the open-ended question "How would you define personal assistance abuse?", a response facilitator was provided, such as "What would a personal assistant do that would hurt?" or "Some people have said having a wheelchair or equipment taken away is abuse. What do you think?"

Data analysis.

Interviews were recorded verbatim and field notes and transcripts were reviewed. Initially, transcripts were coded using established ethnographic and content analysis techniques (Denzin & Lincoln, 1994). Themes were identified according to the constant-comparative procedures described by Lincoln and Guba (1985). Three primary categories of codes emerged: "identifiers" (of abuse), "barriers" (to stopping abuse), and "strategies" (for ameliorating abuse), with five secondary categories: "disclosure", "family", "gender", and "situational factors." Each transcript was coded by the researcher who conducted the original interview as well as by a secondary coder who was a member of the research team who did not participate in the group or interview. All relevant passages were marked as they related to the research questions. Themes were examined that emerged within and across participants. The data units were sorted by category and initial categories were expanded to accommodate new themes that emerged. If there was disagreement between researchers regarding any data unit, it was discussed until consensus could be reached. Several codes were merged to prevent redundant coding and some new categories emerged. After coding, the statements were re-examined with the goal of simplified, thematic interpretation. Data trail procedures allow for a follow-up audit to confirm the verifiability of the findings.

Results

Our findings reveal a range of ways men with disabilities comprehend and relate to the experience of abuse. These findings illustrate, and are presented in the following order: (a) how disabled men define and describe abuse from paid and unpaid (including family) providers; (b) how they perceive the personal and social barriers they face in handling abuse; (c) how they respond to abusive situations; and (d) strategies they recommend to prevent or stop personal assistance abuse in their own and other men's lives. Many of the issues discussed were complex and emotional. In contrast to prevailing assumptions that men might be reluctant to discuss abuse, our participants were forthright in their willingness to explore and reveal their thoughts and anecdotes in this uncharted area of male disability experience.

Defining and Describing Abuse

Participants were asked to attempt to define what they considered to be "abuse," and to give examples and anecdotes of abusive behaviors of a PAS provider. The most common and often the first example mentioned was not showing up for work. For many disabled people, this constitutes endangerment, as one participant stated, "Not showing up is abuse because your life depends on that. It literally does at times."

Participants raised the issue of physical abuse, including rough handling, with or without intent to harm, the extreme being violent assault. One participant told a terrifying anecdote.

   He and I got into the verbal altercation ... so he thought he
   would put me in my place by throwing me up on the back
   of the chair, then letting me hang there. I'm on a ventilator ... I
   had already been off for an hour and a half, and I
   was getting winded ... he just kept screaming at me,
   [forced me] to apologize to him ... [me] hardly able to
   breathe, and I'm supposed to apologize to this guy. He
   really scared the hell out of me.

Other examples of behaviors that could result in physical injury were neglect, inattention, or acting irresponsibly with regard to safety or health concerns. One participant described a hurtful incident:

   An attendant dropped me because he really wasn't paying
   attention, and I broke my leg in the fall. Whether or
   not it's considered abuse, it's harmful ... a lack of focus
   or attention can result in severe physical damage.

Participants with communication disabilities from one focus group offered a series of descriptions for hurtful behavior from personal assistants: "Hitting; bad names, name calling; mad, real mad; They push me ... I hit the concrete with the head; They call me stupid; Nobody help me get out [in a fire drill]."

Other examples of practices our participants considered abusive included being rushed to eat, or required to go to bed too early (to enable the attendant to leave work earlier), which could have serious health consequences for a disabled person. Participants gave examples of poor performance of job duties, which might constitute "abuse," such as withholding care or information (e.g., not informing a man with lack of sensation of a bed sore) or failing to notify him of medication or supply needs.

The unique nature of the job of personal assistance requires sensitivity and awareness of bodily comfort in the context of intimate care. Many participants mentioned bathing and toileting as an arena where abuse might arise, as in the following comment:

   A caregiver who's got a washcloth and he's cleaning
   your groin and doesn't pay attention and scrunches your
   testicles. Now, that's abuse.

Participants described examples of emotional, mental and verbal abuse including shouting, insults, threats, and oppressive comments about disability, patronizing comments or negative attitudes, as this man stated:

   From time to time I'll get an oddball caregiver that
   makes my problems worse by reminding me that I'm disabled,
   that I'm not capable of doing things. And that I
   should try harder or whatever.

Power and control struggles in the employee/employer relationship were described as a source of potential abuse, where an provider's attitude that he "knew better" about care practices could result in conflict and lead to poor care. Participants gave examples that included manipulation, blackmail, gossiping to other care providers, or in the case of a consumer having two or more assistants, one of them attempting to parlay undesirable tasks off onto the other worker.

Participants described many examples of financial and material theft, including of cash, credit cards, stereo equipment, other valuables, as well as medication, using the man's phone for 900 sex calls and forging checks. Misuse of ATM cards was the most common complaint. "They have the run of your apartment when you sleep," one participant said, leaving the man vulnerable to theft. Abuse, theft or misuse of medical or adaptive equipment such as wheelchairs or respirators was mentioned.

Providers coming to work drunk and using illegal drugs before or during work hours was defined as abusive. Participants mentioned this issue frequently as a example of the "trade-offs" they often felt subject to, where the great need for workers in a limited workforce required men to accept less than "acceptable" traits in workers.

When asked about sexual abuse issues, many of our participants, including those very vocal in other areas, were reticent, as if reluctant to acknowledge such a charged and painful issue in a group. One man said, "I can't even imagine sexual [abuse]. I would probably kill the person." Several told of childhood experiences of sexual abuse, and all agreed that any kind of inappropriate sexual advance could be considered "abuse." As expressed by one participant:

   Because when I was in an institution for 10 years I got
   sexually abused. And when I was at, like, 25 different
   foster homes, same thing down the road, same thing. So,
   you know, it may not happen to 200 other men, but
   maybe 500 it might happen to. But I'm just one of those
   that it has happened to.

Most felt strongly that definitions of abuse should include systematic mistreatment by "the system" ranging from an impersonal and uncaring bureaucracy, to discriminatory and exclusionary social services systems, to the failure of Congress to enact legislation that supports PAS services, as this participant described:

   The scariest type of abuse there is.... being abused by
   our government, whether it be state or federal, abused by
   the system, that's worse than getting beat up to me.

Our task in the focus groups of course, was not to achieve agreement or consensus on a definition, but to gather the fullest range of examples possible. Participants commented on the difficulty of defining abuse. Many indicated that the lines, boundaries, and levels of tolerance of abuse result from widely varied personal histories and backgrounds. Also, as one man stated, The definition of abuse, "can depend on the extremity of the disability or need." He felt that he himself being handled somewhat roughly wouldn't constitute abuse unless harm was intended, but that he knew it could be experienced as "abusive" for some disabled men despite its intent.

Many participants felt mistreatment to be a fact of life for disabled men in receiving PAS; their challenge was to determine what they could not handle as the criteria for calling it "abuse." As one man said, "I need to decide for myself what is an acceptable level of abuse and what types of abuse are and aren't acceptable." Many agreed that abuse can sometimes be subtle, thus something one can be unaware of or become accustomed to, as one man stated:

   It's neglect, passive aggressive behaviors, control, not
   listening, deliberately not following directions ... You
   may not be aware of it. And if you've lived with it for
   years and years, it may just go right over your head.

Another participant reflected the difficulty in recognizing abuse when it's happening, "Sometimes it's not till after they have left and gone home that you realize that they crossed the line."

Contributors to Abuse and Barriers to Change

Participants were asked to discuss the range of contributing factors to abuse as well as barriers to challenging, disclosing, intervening in, or preventing abuse. Responses fell into the three main categories: Societal and interpersonal barriers and disclosure issues.

Societal Barriers Societal barriers related to discriminatory attitudes and social practices toward disabled people (as well as about PAS workers) that enabled or encouraged others to objectify, disrespect, marginalize or under-serve them. As one man said:

   Abuse of people with disabilities is a systemic process ...
   with little or nothing to do with the individuals
   involved ... it's the way we treat people with disabilities
   and care providers ... [neither] are valued in our culture.

Participants had much to share here, with anecdotes of ways that such negative attitudes were demonstrated by PAS workers, and could be internalized by disabled men, sadly enabling the abuse to go unrecognized or unchallenged. One man said, "We [disabled men] are easily discreditable ... and for that reason you get away with things."

Few participants felt that calling police could have any value, stating, "The cops won't do anything." One participant recalled in previous years looking to police for support or concern about him as a disabled person, but he felt that this support was unavailable due to increasing crime and social stress.

Participants cited many predisposing factors in abuse, including lack of adequate PAS services, particularly in rural areas, and poor transportation resources. As expressed by one man: Frequently mentioned was low funding for PAS programs, the cause of the low wages and poor or non-existent benefits for providers. Participants talked about how low wages affect recruitment, availability and retention of good workers, while also impacting self-esteem of consumers, as this participant described:

   Like when you have a bowel movement in your pants or
   in the bed, ... to ask someone to help you get cleaned up
   if they are only going to get six, seven bucks an hour.

Participants spoke of how low wages and benefits have contributed to a nationwide crisis in recruitment and retention of workers, and how this affects their standards for quality of care. One man said, "I keep hearing that there's a terrible attendant shortage. I don't want to be left in the lurch, so usually I just adjust." Participants frequently asserted that low wages for providers resulted in poorly qualified workers, which was then strongly connected to potential for abuse. Participants also cited insufficient hours allocated by agencies to complete the tasks, which could stress a provider, lead to "provider bum-out" and predispose them to abusive or negligent behavior.

Some participants blamed the lack of response to abuse on the "medical model" of disability, which they said tends to ascribe individual physical and medical causes for any of the difficulties of disabled people, while ignoring social or environmental factors. Participants said that the "attendant knows best" attitude in some providers arises from a medicalized view of disability, with the disabled man cast in the "patient" role, and the provider as the nurse-in-charge. In contrast, participants described the "disability minority model" which takes into account the effects of societal discrimination and socially imposed barriers.

Fear of institutionalization was mentioned several times as a factor in some men's settling for less than acceptable PAS. Several participants expressed concern about the outcome of studies like this one, referring to legislation in some states that attempts to protect disabled people from abuse by controlling and limiting the consumer-directed PAS system:

   Studies like this are very helpful, [but] in the wrong
   hands, they could potentially make it look like, ... "we
   need to jump in there and protect these poor little crippled
   people".... We have to be careful that that isn't misinterpreted
   by some well-meaning legislator ... and used
   against us.... you know, try to limit and tell us who we
   can ... and who we can't have work for us.

Frequently mentioned was the lack of choice many PAS users have in who they may have work for them. Several participants utilized PAS agency programs that assigned them their providers (as opposed to consumer-directed where consumers interviewed and hired their own workers). They complained that this kind of agency control prevented them from addressing abuse factors. Participants spoke of home care agencies referring incompetent workers, and even drug abusers. Several participants complained angrily that social workers or other agency staff people ignored consumer pleas about abusive workers, as one man said, "Case managers are the abusers who are supposed to be monitoring the abuse but [they] ignore it or rationalize it."

Interpersonal Barriers

Interpersonal barriers to stopping abuse described by participants included lack of individual knowledge about abuse resources or PAS management, shame and embarrassment at needing help, shame about body image or function, feelings of being a burden to one's family and fear of retribution or retaliation by the provider. Some participants referred to a "victim attitude" which could make a man even more vulnerable to abuse. Many participants expressed an attitude of despair: nothing can be done about abuse. In addition to these barriers, three main themes emerged regarding their experiences. These related to male socialization, family as caregivers, and disclosure issues.

Male socialization. Several participants described male socialization as a barrier to adequately recognizing or addressing abuse issues. As one man said:

   Our society doesn't see either group [disabled men or
   PAS workers] in a particularly partial light. It doesn't
   provide a lot of support but has high expectations of
   independence and being macho ... We're all little John
   Waynes.

Several participants identified male anger, instigated by either the consumer or the provider as a contributor to abuse, "You get into the testosterone battles where ... it's who's going to win?" said one participant. Another described this tendency as "ego-testicle" where the interaction with PAS workers became a male battleground.

One participant identified the difficult learning curve of consumer-directed PAS and its potential for conflict, especially for younger or less-experienced PAS users.

   Younger disabled [people] do not understand how to
   control their attendant ... the attendant becomes like
   almost their leader. When you [begin to learn to] transfer
   that power structure from the attendant to [the consumer]
   there's a power conflict ... you transfer it to the disabled
   man and the conflict's over.

Family care and abuse.

Many participants described dependence on family providers as a potential arena of abuse, giving many anecdotes of complex interpersonal family dynamics. Participants spoke of their own guilt, feelings of failure or fear of being a burden. The issue of "trade-offs" emerged prominently for those using family care providers. The advantages were many: The convenience of PAS if family care providers lived with the consumer, shared cultural preferences such as for food, spontaneity of scheduling, dependability for emergency care, and for many, free PAS, though sometimes family caregivers are paid. Many men said they felt they could depend on family more than paid assistance, that the genuine concern or love from family made them feel safer. However, the "cons" of the arrangement were numerous. Many men said family tended to be more controlling, imposed their own standards and were more difficult to direct. With respect to a family member providing PAS, one man said:

   Even if it's the same contract, same salary, everything
   [the] same, it's never the same relationship [as with a
   non-family member.]. It's much harder to criticize a
   member of the family that's working for you than the
   paid worker ... much harder to fire.

Some participants spoke of settling for less than adequate care in order to gain access to other loved ones. One man described his situation where he hired family members (whom he felt exploited his situation for the money and still provided poor care) as the only way to be close to the children he loved.

   I love having my granddaughters around, so I'm going to
   go ahead and be used and neglected ... It's a trade-off.

Several participants spoke of family members attempting or succeeding in interfering with the PAS consumer-provider relationship, as in this anecdote:

   My mom took one of my caregivers aside while they
   were cleaning up in the kitchen and told her "Now, you
   remember you're in charge;" she meant [well.] I quickly
   made a big joke out of it, but let her know that that wasn't
   the case.

Participants spoke of their difficulties in feeling like a burden, even if family members expected to "take care of our own." Several participants told of feeling caught between imposing on family members and having no alternative but to depend on family.

   My daughter resented having to do my care ... but I--we're
   stuck. What do we do? ... I feel mortified that I
   have to do this. But I've got to get on with things. How
   do you carry that, deal with it? It's tricky.

Disclosure Issues

Disclosure of abuse was a crucial issue that emerged in our groups. Participants spoke of ambivalence about reporting. "You know, men" one participant said, addressing the rest of the focus group, "I don't imagine a whole lot of us would be willing to admit to, let alone actually discuss a physical abuse situation. But there are cases out there." Another spoke up, "Well, I've been struck once myself, actually a closed fist punch. So, you know it does happen. But, I never knew who to go to ... or who to talk to."

Our participants spoke passionately about the culture of male ethics that prohibits men from complaining or "squealing." That would be showing vulnerability, being a "wuss," "acting like a girl," participants admitted. Many participants stated their belief that, if men were to attempt to disclose abuse, as in the following case, by a woman provider, no one would believe them.

   You are supposed to be in control, and you're not. And
   people will not believe you. If I said my [female] attendant
   smacked me upside the head--"Oh, yeah, right.
   Sure."--they won't believe me, as a man, that a woman
   [abused me]. It just wouldn't sound right.

A participant with cognitive disability said that he was blamed for his mistreatment:

   They throw water at me. It makes me mad. My boss says
   my problem. [Moderator: Does that make you feel like
   you are not believed?] Uh-huh.

Participants expressed that men were expected to "just take it" and further, that nothing could be done, so why disclose?

   Society has always imposed on men that we are supposed
   to be able to defend ourselves and handle ourselves,
   and if physically come at, we are supposed to be
   able to punch them out. I can't punch them out. It's very
   emasculating ... to tell somebody, "I was abused by this
   person." ... [Disabled] men have a tendency to just
   swallow it and stay silent.

Aspects of this male ethic actually served to protect perpetrators of abuse, as this participant described:

   We have a new disabled crime victims' initiative in this
   state, but there is a tendency ... for the disabled person
   [not to] want to report it ... one of my last attendants
   stole money, ... I just didn't want to report it. I couldn't
   see myself putting my friend, Al--I call him my friend,
   through a court process ... him in jail; he had a son, and,
   it was like, it would have been my word against his.

The structure of services may exacerbate reluctance to disclose. Several participants utilized home health agency programs that assigned them their providers, (as opposed to consumer-directed where users interview and hired their own workers). They complained that this kind of agency control discouraged disclosure.

   If we keep on going back to the agency ... telling them
   that this person is not working out, it makes us looks like
   we're a problem client. There comes a point in time
   when we're afraid to speak out ... You go back and say
   you'll give [an abusive provider] a second chance, and
   that second chance turns into ten chances. Fear of being
   institutionalized can figure greatly in the reluctance to
   report abuse: Adult Protective Services--there is a real
   danger when you go to these people ... they think that
   their answer to protect the disabled person is to take them
   out of their house and the next thing they find themselves
   in a nursing home ... They look at it as poor victims who
   need to be protected ... they take your independent life.
   .. and put you in a disabled person's prison ...

Coping Mechanisms: Responses and Reactions to Abuse

What was it like for these men to discuss, even consider issues of abuse? We asked the participants to talk about their reactions and responses to abuse and mistreatment and how they handled it. Participants spoke of difficulties verbalizing their feelings or thoughts in relation to the issues of abuse. They discussed the complex issues for the disabled male's failure to meet cultural standards of the male role. Participants spoke of "machismo," which discourages the showing of emotion and vulnerability, or of needing any help. Disabled men do require assistance and may indeed be vulnerable. Some spoke of difficulties acknowledging the need for help and asking for help, both for disability accommodation and abuse intervention. Several participants were large or tall men, which they said made them feel additionally humiliated in their experience of vulnerability. They couldn't punch out the abuser, but still felt expected to be able to do so, and were caught in the bind. This loss of "manhood" was perceived as the disabled man's fault, as one participant said in reflecting on an incident:

   Why did I let it happen? It's my mistake because ... I
   should see that coming or I should do some action or I
   shouldn't be in this kind of position.

Several men indicated a willingness to restrict their lives, reducing their activities and expectations, trying to need fewer things, reducing their standards for quality of care rather than get help, thus reducing feelings of vulnerability and the likelihood of any power conflict. Some of our participants mentioned isolating one's self as a typical male coping mechanism, and of the difficulty of doing this as disabled men.

   I can't isolate. God damn, I want to isolate. The longest
   I can be away from people is until I fill this bag.--That's
   a pisser ... Why do you think men go fly fishing,
   honey? It's not only to get away from women. It's to get
   away from other men too.

Several participants employed the perspective that "it could be worse."

   Adequate caregivers are hard to find, you know, be
   thankful you at least have your pants on.

Passively accepting one's fate was mentioned by participants who stated they were "willing to be flexible," "willing to let it ride," "live with it," some saying they would be willing to tolerate even to the extreme.

   I resolved to myself that I'm going to get abused. I'm not
   going to have a perfect life ... And knowing that, it
   makes it easier for me to identify abuse and what's tolerable
   to me. There's some behaviors I will accept and
   some that I won't ... And I try to remind myself to look
   at the big picture.

Participants spoke of the lack of attention to this issue in general and specifically in the disability community and even in Independent Living Centers that coordinate PAS. Many of our participants indicated that there was considerable fear about this issue among disabled men, but that it was rarely acknowledged, even among close friends. A few participants speculated about how disabled women handle abuse issues. Some comments revealed assumptions that disabled women are better at disclosure and better at organizing and creating resources. "I wish we had a Gloria Steinem," one man said.

Strategies for Responding to Abuse

Finally participants were asked to describe their strategies for responding or handling abuse. As one man said, "We can't reciprocate with punching somebody out ... One avenue that was once available is no longer available. You have to learn alternative methods to deal with when you have been abused or insulted". The men were vocal about how they managed their situations, rarely accepting a passive role despite the recognition that abuse was a part of their lives. Many revealed an underlying strategy to try to take control even if that meant determining what mistreatment one would have to tolerate. Our participants had many ideas on responding to abuse, or proactively how to prevent it.

Many of our participants recommended taking some kind of action. This could consist of building abuse awareness and knowledge through public education, taking protective steps, such as pursuing criminal background checks for new employees, installing locking systems that could be easily changed and utilizing a secure banking system that prevented theft.

Good employee management or being a responsible boss to PAS providers was suggested as the best way to avoid abuse in the first place. This could include good communication between consumer and provider, careful supervision, drawing up a contract in the beginning of the employee relationship and then revisiting agreements. Several participants recommended being willing to be listener to the PA as well as expecting the PA to listen to them.

   If they've got a legitimate bitch or a complaint, let them
   speak it out while they are doing my care because they
   get it off their chest. And if I've had a bitch or a complaint,
   I can get it off my chest ... that might be a little
   therapeutic for both of us.

But others employed the opposite solution, recommending a "professional distance" from the worker, as this man revealed, along with the emotional cost.

   I try to keep my interactions with attendants down to a
   minimum ... I also realize that there is a sense of isolation
   I have to confront. Loneliness that the other person
   isn't there ... But I pretty much decided I'd rather take
   the loneliness than to have to deal with somebody that's
   going to screw me around.

Participants suggested resources for consumers in improving their PA management skills including training, support groups, use of mentors, and peer counseling. Several participants emphasized the importance of having back-up providers:

   You learn to keep backup around. You get dropped once,
   you spend three, four days hunting around for somebody
   to help you with bowel care. You learn quick.

Many spoke of looking out for each other in the community, and of finding help and support from faith-based organizations, mediation services and therapists. As expressed by one participant:

   Maybe some of the things we can think about doing are
   learning how to be watchdogs for each other in the disability
   community, caring about each other, and when we
   see something going on with somebody, we work with
   each other and we try to be a support group to each other.

A number of our participants raised the issue of the PA being abused by the consumer and the responsibility the disability community has in addressing this complex issue.

   I've sometimes run into people who used to be attendants.
   I ask why they've stopped and very often it's
   because of being yelled at; having things thrown at them
   ... being belittled; being lied to [about] money; bounced
   checks.

Many participants felt strongly that disabled people should work for improved conditions for PAS workers, by supporting unionization or increased wages and benefits. Suggestions from participants to improve the state and county PAS systems for consumers and workers included better provider recruitment, better training, and provision of emergency backup services.

Discussion and Summary of Results

Participants in this study clearly indicated that abuse occurs for disabled men who use personal assistance. Sources of abuse included: not showing up for work; physical violence including rough handling; neglect; being pressured or rushed; and poor performance of job duties, such as withholding care or crucial information or failing to notify the consumer about medication or supply needs. Financial and material theft was described as a common abuse. Other forms of abuse included use of illegal drugs and alcohol by providers on the job, and lack of sensitivity or awareness of bodily comfort in intimate care. Emotional and verbal abuse included shouting, insults, threats, oppressive comments about disability, patronizing attitudes and negative comments. Sexual abuse included unwanted sexual advances, and pressure to participate in unwanted sexual contact.

Boundaries and levels of tolerance of abuse vary based on men's personal histories and backgrounds. For example, rough handling could be interpreted as frightening and dangerous abuse, or as ordinary male camaraderie. Many participants described mistreatment as a fact of life to be endured or tolerated. Abuse could be so subtle that one could be unaware or accustomed to it.

Abuse was described as stemming from both societal and interpersonal causes including discriminatory attitudes and practices, lack of PAS providers related to low pay and benefits, lack of access to PAS management knowledge and resources, male socialization, embarrassment and retribution by the provider. Participants indicated that societal views of disability, which tend to ascribe physical and medical causes for the difficulties of disabled people, ignore social and environmental factors that contribute to abuse. Family care provision was identified as a potential source of abuse due to caregiver burnout, complex interpersonal dynamics around boundaries and control, and difficult "trade-offs" required of consumers in settling for less autonomy and care in exchange for addressing other needs.

Disclosure of abuse was identified as a significant difficulty for men with disabilities, due to a range of factors. Resistance to revealing vulnerability was mentioned, along with ambivalence about reporting due to not wanting to implicate the provider, having to dealing with bureaucratic process and concerns about negative consequences, including institutionalization. The "male ethic" of not squealing or complaining was frequently mentioned as a barrier to disclosure.

Participants discussed men's difficulty verbalizing feelings or thoughts, some attributing this to "machismo," which discourages men from revealing emotions or vulnerability. Some talked of feeling shame and self-blame in failing to meet cultural standards of manhood. Participants spoke of an attitude of submission or settling for what help they could get, and that it could be worse, one saying, "at least you have your pants on." Some men indicated a willingness to minimize their lives or isolate themselves in order to avoid needing help. Many participants spoke of the lack of attention to abuse of disabled men within the disability community and the larger society. Some compared disabled men to disabled women, admiring the degree of disclosure modeled by disabled women.

As strategies to address abuse, participants suggested learning alternate methods of power dynamics than physical force to respond to difficulties. Many participants recommended taking action in various ways, for example, through building societal awareness of abuse and resources, criminal background checks and having back-up PAS, building PAS management skills. Some of our participants expressed concern about abuse of PAS workers by disabled employers.

The participants in this study communicated clearly that with experience, support and appropriate resources, men with disabilities can effectively manage the challenge of PAS abuse. Many participants indicated that self-directed recruiting, hiring, training and supervising one's provider was preferable and could reduce the likelihood of abuse. Concern was expressed that this research documenting provider abuse of disabled people could potentially backfire. Portraying disabled men as hapless victims of abuse could be misinterpreted to imply that all disabled men are better served by medically supervised models of PAS. This could weaken or undermine the availability of the range of consumer-directed services, which afford autonomy for disabled PAS users.

Comparisons Between Disabled Men and Women

Based on our studies of both women and men with disabilities over seven years, men's experience of abuse appears to have both similarities as well as significant differences. Men and women identified very similar forms of PAS provider abuse, revealing that the nature and experience of abuse crosses gender lines. They both described many common factors as well as barriers and strategies to addressing abuse and shared the perspective that abuse is fundamentally a power and control issue.

The men were more straightforward in naming and describing the abuse. Women were initially more hesitant to describe abusive experiences and were much more likely to embed the description within the context of an interpersonal relationship. However, men reported greater difficulty with disclosing abuse to others than women, probably due to a prevalent male "ethic" of stoicism and resistance to appearing or admitting vulnerability. Men's overall responses to abusive situations were also different from women's, with men more likely to assume that nothing could be done to prevent abuse, and hence adopting perspectives of abuse as a reality that must be endured. Men were more likely than women to describe instrumental PAS management strategies that could control their exposure to abuse--approaches such as having multiple providers. The men seemed more likely to blame themselves when abuse occurred. In contrast, disabled women tended to assume that something ought to be done about the abuse, and they were not to blame. These latter differences are likely the result of the women's movement and the domestic violence movement that have supported women's awareness and resources about naming and addressing abuse, whereas very little social effort has evolved to address men's experience of abuse. Finally, although men and women with disabilities have highlighted systemic barriers in PAS services and abuse reporting and resources, many of the men interviewed spoke of these barriers as themselves abusive, impeding people with disabilities from protecting themselves and effectively managing abuse.

Recommendations

Hopefully these findings will prompt increased attention to the abuse of men with disabilities. Toward this end, recommendations are offered.

Expand Definitions of Abuse

Domestic violence, criminal justice, disability and independent living services must recognize that men with disabilities experience abuse in personal assistance relationships. Current definitions of domestic abuse must be expanded to include the various forms of abuse experienced by individuals with disabilities, including abuse in the PAS provider-consumer relationship, and as a part of the continuum of human experience where abuse and violence must not be tolerated.

Expand Community Services

Emergency back-up PAS services, shelters, crisis hot-lines, provider screening and registries, abuse-prevention education, support groups, and individual peer mentor programs are needed through Centers for Independent Living, rehabilitation facilities and self-help organizations to assist men and women with disabilities in safety planning and addressing abuse. Safeguards for protection against theft by PAS providers of commonly stolen items such as credit cards, checks, keys, phones, durable medical equipment and other personal possessions are needed.

Violent crimes and theft perpetrated against people with disabilities must be investigated and prosecuted to the same extent as crimes against any citizen. The criminal justice system must be educated to transcend discriminatory notions that mistreatment of disabled persons is ever justifiable in any context, including abuse perpetrated by family members.

Offer PAS and Abuse Education

Training in accessible and appealing format, culturally appropriate for a range of audience should be made available for consumers of PAS that enable them to better recognize and respond to abuse. These could include PAS management skills, assertiveness training for appropriate and responsible self-directed PAS. Training and educational materials also are needed for family providers.

Improve Avenues for Abuse Reporting

Easier, less intimidating avenues for abuse are needed to enable disabled men to communicate with resource people via peer-run hot lines and on-line resources, such as chat rooms and discussion lists.

Conduct Research, Development and Dissemination

Additional research, development and dissemination is needed about disabled men's experiences of abuse. Specific areas for further investigation include: (a) relationships between factors such as provider wages and benefits, consumer direction of PAS, availability of back-up PAS, and the incidence of abuse; (b) appropriate methods for increasing men's abuse awareness and disclosure; (c) community abuse services and resources; (d) the potential for "backfire" invoking restrictive measures that "protect" disabled people from the hazards of autonomy; and (e) the impact of education on responses to abuse of people with disabilities by law enforcement, domestic violence, disability groups and other community organizations.

This study, the first in-depth examination of disabled men's experience of abuse, was initially not funded. In their comments, the reviewer's questioned whether men with disabilities would talk about abuse. Quite the contrary, participants were highly motivated to discuss their experiences and perspectives--many indicated that this study was the first opportunity they ever had to talk about abuse in men's lives. Due to resource limitations, the study was closed with a waiting list of 25 men. The abuse of men with disabilities must not be ignored or tolerated. Through proactive acknowledgement, examination and response to the issue--conducted in partnership with disabled men--their safety and empowerment will increase.

Acknowledgement

Preparation of this manuscript was supported, in part, by grant #H133G010040 from the National Institute on Disability and Rehabilitation Research, US Department of Education. Endorsement of the opinions herein by the funding agency should not be inferred.

References

Allington, C. L. J. (1992). Sexual abuse within services for people with learning disabilities: Staffs' perceptions, understandings of and contact with the problems of sexual abuse. Mental Handicap, 20, 59-63.

Brown, H., Stein, J., & Turk, V. (1995). The sexual abuse of adults with learning disabilities: Report of a second two-year incidence survey. Mental Handicap Research, 8 (1), 3-24.

Connell, R. (1995) Masculinities, Cambridge: Polity Press.

Curry, M. A., & Navarro, F. (2002). Responding to abuse against women with disabilities: Broadening the definition of domestic violence. Health Alert, 8, 1-5.

Curry, M. A., Powers, L. E., Oschwald, M., & Saxton, M. (2004). Development and testing of an abuse screening tool for women with disabilities. Journal of Aggression, Maltreatment and Violence, 8 (4), 123-142.

Denzin, N. K., & Lincoln, Y. S. (Eds.). (1994). Handbook of qualitative research. Thousand Oaks, CA: Sage Publications, Inc.

Kimmel, M. (1996) Manhood in America, New York: The Free Press.

Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.

Litvak, S. (1987). Attending to America. Oakland, CA: World Institute on Disability

Litvak, S., & Kennedy, J. (1991). Policy issues and questions affecting the Medicaid personal care services optional benefit (Contract No. HHS-100-89-0025). Oakland, CA: World Institute on Disability.

Marchetti, A. G., & McCartney, J. R. (1990). Abuse of persons with mental retardation: Characteristics of the abused, the abusers, and the informers. Mental Retardation, 6, 367-371.

National Research Council. (1996). Understanding violence against women. Washington, DC: National Academy Press.

Nosek, M., Howland, C., & Young, M. (1997). Abuse of women with disabilities: Policy implications. Journal of Disability Policy Studies, 8, 157-175.

Pease, B. (2002). Men and Gender Relations. Melbourne: Tertiary Press.

Powers, L. E., Curry, M. A., Oschwald, M., Maley, S., Eckels, K., & Saxton, M. (2002). Barriers and strategies in addressing abuse within personal assistance relationships: A survey of disabled women's experiences. Journal of Rehabilitation, 68 (1), 4-13.

Rutgers University, Bureau of Economic Research. (1990). The need for personal assistance (in coordination with the World Institute on Disability, Grant No. G0098200134). New Brunswick, NH: Author.

Saxton, M., Curry, M. A., Powers, L. E., Maley, S., Eckels, K., & Gross, J. (2001). "Bring my scooter so I can leave you": A study of disabled women handling abuse by personal assistance providers. Violence Against Women: An International and Interdisciplinary Journal, 7 (4), 393-417.

Sobsey, D., & Doe, T. (1991). Patterns of sexual abuse and assault. Journal of Sexuality and Disability, 9, 243-259.

Sullivan, P. M., Brookhouser, P. E., Scanlan, J. M., Knutson, J. F., & Schulte, L. E. (1991). Patterns of physical and sexual abuse of communicatively handicapped children. Annals of Otology, Rhinology, and Laryngology, 100, 188-194.

Turk, V., & Brown, H. (1993). The sexual abuse of adults with learning disabilities: Results of a two-year incidence survey. Mental Handicap Research, 6 (3), 193-216.

Ulicny, G. R., White, G. W., Bradford, B., & Mathews, R. M. (1990). Consumer exploitation by attendants: How often does it happen and can anything be done about it? Rehabilitation Counseling Bulletin, 33 (3), 240-246.

Whitehead. S. (2002) Men and Masculinities: Key Themes and New Directions Cambridge: Polity Press.

Young, M., Nosek, M., Howland, C., Chanpong, G., & Rintala, D. (1997). The prevalence of abuse of women with physical disabilities. Archives of Physical Medicine and Rehabilitation, 78 (5), 34-38.

Marsha Saxton

Worm Institute on Disability

Elizabeth McNeff

Portland State University

Laurie Powers

Portland State University

Mary Ann Curry

Oregon Health & Science University

Mark Limont

World Institute on Disability

Jack Benson

Portland, Oregon

Marsha Saxton, Ph.D., World Institute on Disability, 510 16th St. Oakland, CA 94612. Email: [e-mail]