While abuse in the literature has been defined by researchers and providers as physical, sexual, emotional, and financial abuse and neglect, it is not clear how persons with disabilities (PWD) define abuse and who they see as likely abusers. This paper explores the issue of abuse with PWD themselves. It asks about the types of behaviors identified as abusive and who PWD see as likely abusers. Six focus groups were conducted with members of NJ self-advocacy groups. While PWD defined abuse using traditional categories, they also provided examples of situations involving infringement of rights. Perpetrators were more likely to be known rather than unknown and, very often, were family members. Our findings suggest the importance of exploring critical issues such as abuse with affected populations themselves. The findings also suggest the need for self-advocacy training and training for family members, caregivers and criminal justice personnel.
Keywords: Disabilities, abuse
Background and Significance
In a stratified society characterized by inequality, certain groups experience marginalization. Marginalization refers to the unequal distribution of resources and power which produces conflict between groups, leaving some more vulnerable to abuse than others. Persons with disabilities are one such group (Oliver, 1996; Campbell and Oliver, 1996). They are marginalized socially, economically and politically and frequently are treated as a subordinate group within society. Individually and collectively they are denied full participation in society. Their marginalization places them at a serious disadvantage within the community. People with disabilities experience conflict in a variety of forms, including problems of physical accessibility, lack of employment opportunities and lower salaries, and problems accessing health care.
One important manifestation of the marginalization of persons with disabilities can be seen in the rate of abuse directed at people with disabilities. Research on abuse traditionally defined as physical, emotional, sexual and financial abuse and neglect has documented that people with disabilities experience rates much higher than the rate for people without disabilities (Crosse et al., 1993; Sobsey et al., 1995; Sullivan and Knutson, 2000; Wilson and Brewer, 1992). Traditional methods of capturing data on crime victims, however, such as the Bureau of Justice Statistics National Crime Victimization Survey and the Federal Bureau of Investigation's Uniform Crime Report have not included data on the crime victim's disability status.
While abuse in the literature is defined by researchers and providers as physical, sexual, emotional, and financial abuse and neglect, there are very few studies which focus on how people with disabilities actually define abuse. The Roeher Institute (1995) surveyed a sample of people with disabilities (as well as conducted interviews and focus groups with service providers, police, advocates, and family members). They found that types of violence and abuse identified by persons with disabilities included: physical violence; denial of rights, necessities, privileges, and opportunities; verbal and emotional abuse; and failure to respond to their complaints of abuse and violence. In addition, there have been studies of other marginalized populations where it was found that members of the affected population have defined abuse more broadly. For example, Lewis, et al (2005) studied intimate partner violence in the Latino community and found that women (many of whom were victims of violence) added another category to possible types of abuse. In addition to identifying traditional types of abuse (physical, sexual, emotional, and financial abuse), they spoke of the unequal burden of expectations imposed on women in society as a type of abuse. This abuse (identified as "unequal burden") referred to the abusive expectation that women were not only expected to cook, clean house, shop and prepare food, care for children and aging parents, and meet the needs of their spouse, but they were also expected to contribute financially as a breadwinner within the family — and in many cases, the only breadwinner.
A similar understanding of how people with disabilities actually define abuse is missing from the literature. The overall goal of our research was to develop a better understanding of abuse directed at people with disabilities — from their perspective. 01 In particular, we wanted to learn about types of behaviors identified as abusive, likely abusers, reporting behaviors and perceived outcomes. This paper focuses on the way in which abuse is defined by people with disabilities and who they identify as likely abusers. Findings with regard to reporting abuse have been presented elsewhere (West and Gandhi, 2005).
Focus groups to discuss the issue of abuse were conducted with people with disabilities who were a part of a self-advocacy or support group. While some may take issue with the fact that we were asking people to discuss a very sensitive issue using a public format, we felt that engendering a general discussion in a self-support group where participants felt supported by one another as they offered ideas was an appropriate methodology to use as a first step in the process of exploring this issue with people with disabilities. According to Krueger (1988) a focus group is
a carefully planned discussion designed to obtain perceptions on a defined area of interest in a permissive, non-threatening environment. It is conducted with approximately seven to ten participants by a skilled interviewer. The discussion is relaxed, comfortable, and often enjoyable for participants as they share their ideas and perceptions. Group members influence each other by responding to ideas and comments in the discussion.
The focus group approach was selected as an appropriate method to explore a sensitive topic with people with disabilities. The introduction by the moderator was designed to make people comfortable in sharing their views. It is our intention to continue our research in this area and next explore this issue in one-on-one interviews with people who have self-identified themselves as victims of abuse.
Six focus groups were conducted in 2004. The purpose of these groups was to explore the issue of abuse directed at people with disabilities. With help from two self-advocacy organizations ("Monday Morning Networks" organized by the NJ Council on Developmental Disabilities [NJCDD] and the NJ Self-Advocacy Project of The Arc of New Jersey) participants were recruited for the focus groups; both organizations represent a network of smaller organizations that meet on a regular basis around the state. Membership is limited to adult consumers ages 18 and older with a wide range of disabilities, including physical and cognitive disabilities. Some members have developmental disabilities; others have become disabled later in life. While some members lived in institutional settings in the past, all are currently living within the community either independently or in supervised living settings.
Rather than recruiting from the general population of persons with disabilities, recruitment was limited to members of these self-advocacy groups. It is important to remember that these individuals may be unique because of their participation in outside groups. We worked through self-advocacy groups whose members have received self-assertiveness training and workshops on public speaking and who frequently participate in public forums and presentations because we hoped members would be more willing to talk about the issue of abuse.
With the help of several members of the New Jersey Self-Advocacy project, focus group questions were drafted, pre-tested and then revised. Focus groups were held in settings around New Jersey in the north, central and southern regions of the state. Groups were facilitated by the principal investigator and co-facilitated by a graduate student. In addition, two members of the New Jersey Self-Advocacy project were trained as co-facilitators. The presence of the self-advocate serving as a co-facilitator helped ease entry into groups. The individuals helped answer participants' questions, suggested probes and made participants feel more comfortable during discussions.
All focus groups were held in physically accessible locations including public library meeting rooms, the offices of disability organizations, and city municipal buildings. These locations were settings where the self-advocacy groups were meeting on a regular basis. In most cases, transportation was prearranged by the self-advocacy groups; however, where assistance with transportation was needed, arrangements were made.
At the start of each meeting, the purpose of the study was explained and persons who agreed to participate were then asked to initial a consent form. An alternative activity was made available for anyone who did not want to be a part of the focus group. On average, focus groups were one and one-half hours in length. At the conclusion of the focus group, a small incentive was provided to each participant to thank them for their participation.
In starting the focus groups, the facilitator explained that the purpose of the discussion was to learn more about "seriously wrong things some people do to people with disabilities. These are things considered wrong by the person with a disability, including seriously wrong things people do that physically hurt a person or scare them, or that take away things that belong to the person." This definition was developed through discussions with staff at The Arc of New Jersey and with the advice of our co-facilitators.
Once the definition of abuse had been provided, the facilitator then asked participants to offer examples of things people do to people with disabilities that are wrong or bad. Facilitators explained to participants that they did not have to talk about anything they were not comfortable discussing in the group. When examples were provided, the facilitator did not ask the individual if the situation was one they had personally experienced or whether it involved anyone they knew. Counselors were on hand at the meetings to follow-up with situations where people wanted to talk further after the focus group. Only in one case was a counselor called upon to discuss a situation that came up during a focus group.
Talking about abuse:
- Give me some examples of things people do to people with disabilities that you think are wrong or bad.
- Who is likely to do these things to people with disabilities?
After the participants stopped providing examples, participants were then asked about other kinds of abuse that had not been mentioned. For example, if no examples of financial abuse were provided by participants, the facilitator would then ask about this type of abuse. In coding the transcripts, examples "first mentioned" without probes were coded as FM and those offered "after probes" were codes as AP. Participants were also asked about abusers — who were the people likely to do these things to people with disabilities. They were also asked about settings where abuse was more likely to happen, whether people with disabilities report these types of situations when they happen, why or why not, and what happens when they do report. Each focus group ended with a general discussion of things people can do to be safe from abuse. As noted above, data from only the first two questions are reported here. Findings from the other questions have been reported elsewhere (West and Gandhi, 2006).
All focus group sessions were audiotape recorded with the permission of participants and tapes were transcribed. A content analysis of the major themes in the transcripts was then undertaken using Atlas.ti (Version 5.0) — a software program that helps with the process of coding long narratives for themes. Once coded, the findings can be sorted by theme. A group of initial codes were created based on major themes found in the literature and then supplemented with additional themes drawn from reading the transcripts. The themes were then applied to code each transcript in Atlas.ti. The coding completed by a graduate student was then compared with coding done by the principal investigator to assure agreement in the application of codes and differences were discussed and resolved.
Based on a reading of the transcripts, types of abuse were coded as physical, emotional, sexual, financial, neglect, denial of rights, isolation and other. Certain examples were offered that could have been cross categorized in several ways, in particular, some examples of neglect and emotional abuse could be coded into either category. Several situations were described by participants that could have been categorized as either neglect or emotional abuse. In these situations, the two coders reviewed the full transcript and discussed the situation. It was agreed that if the person described the situation in terms of its emotional impact on them, it would be coded as emotional abuse. If it was offered with no reference to any emotional impact on them, it was coded as neglect. In describing a situation, if a participant actually used a term being used for categorizing a type of abuse such as "physical abuse," "neglect," or "isolation," we coded the example accordingly — even if the example seemed more suitable under another category of abuse. For example, in one situation, a participant described a situation as "neglect" — even though it could have been coded as "isolation." We coded the example according to the participant's characterization.
Abusers were coded as either unknown or known. Known abusers were further differentiated between "known intimates" who included family and partners and "known acquaintances" who included friends, institutional staff, community caregivers, students/teachers, health professionals, coworkers/boss, police/security personnel, or other people with disabilities. In several examples, a participant referred to an abuser as a "stranger" or "unknown abuser" and yet the full context described suggested that the abuser was a friend of a family member. In these conflicting situations, the coders discussed the examples in light of the full transcript. In general, if the situation was one where the participant described the abuser was "known" to the family, but they still categorized the abuser as "unknown" — the abuse was categorized as "unknown" based on the participant's categorization.
- Physical abuse included examples of acts such as hitting, punching, or pushing someone.
- Examples categorized as emotional abuse included situations where participants spoke of intimidation and threatening behaviors and "feeling hurt" by name calling.
- Isolation was coded separately from emotional abuse and referred to examples of situations involving being kept separate from others and being ignored. However, when individuals referred to being "emotionally hurt" by their isolation, the event was categorized as emotional abuse. While isolation could be viewed as a denial of a person's right to socialize, it was kept as a separate category and used to classify examples of being kept separate from others and not being allowed to go out in public and do things.
- Examples categorized as sexual abuse included inappropriate touching or fondling, and unwanted sexual intercourse.
- Financial abuse was used to classify examples given involving use of an individual's funds. It also was used to code situations where people described not receiving monetary raises in their job.
- Examples categorized as neglect included situations where the individual described being abandoned by others. Certain situations where people spoke about being ignored were also categorized as neglect — but only if the participant did not speak about the "emotional hurt" of this type of behavior.
- Denial of rights was used to classify examples involving loss of the right to privacy, the right to bear children, or the right to have a girlfriend or boyfriend.
- In several of the focus groups, participants specifically used the term "discrimination" as a type of abuse and gave examples of being denied the right to a job, an education or a driver's license.
Focus group data are primarily qualitative data — not quantitative data where the respondent selects from pre-established response options. As Krueger suggests (1988), the open-ended questions allow participants to choose the manner in which they respond and the group interaction allows people to change their opinions throughout the discussion. The researcher primarily seeks to identify evidence or themes that are repeated and common to several participants or more. At the same time, the range and diversity of opinions offered in a focus group is vital: hence opinions offered only once are enlightening in demonstrating the range of ideas, but they are not used to form the crux of the findings.
While focus group data are considered qualitative data, software systems have been developed (such as Atlas.ti) that allow the researcher to code themes and run simple frequencies for the data; however, more complex quantitative data analysis is not appropriate.
The data are reported here as frequency distributions of themes discussed in each focus group. For example, if a participant spoke about physical abuse three times in a focus group — even if the reference was to the same situation of physical abuse — each time it came up it was coded as "PHYSICAL." The frequencies reported below, therefore, represent the number of times the code "PHYSICAL" was applied to comments in each focus group as well as totals for all six focus groups. The data presented below, therefore, include multiple references by the same person to a single event.
Sixty (60) people participated in the six focus groups. Groups ranged in size from 6 participants to 23 participants. This included 15 men and 45 women as shown in Table 1. In the focus groups, the ratio of male to female participants ranged from .50 to .80, with the exception of FG3 which was all female and very large. This group therefore skewed the overall gender distribution and resulted in an overall male/female ratio of .33. Several explanations for more female participation are possible: (1) the issue may have resonated as significant for more women and therefore women may have been more likely to agree to participate in the groups or (2) women may simply have been more willing to discuss the issue than men, even though the issue was of significance to both groups. One male participant suggested that a negative stigma about being the subject of abuse may be more of a concern for men than women. He thought it is easier for women to report abuse than men because "… people tend to be more sympathetic towards a woman … that's what they're used to. But if a man's being abused, people tend to say, 'Well, buck up.'… It's kind of like men don't cry, so therefore, there's disbelief. Even though that could be, so I just don't think it goes as reported as much because I don't think … (a) men may not report it as much and (b) because people just might not believe them." (FG2)
No additional demographics were collected on participants for several reasons. First, we thought it would be burdensome to ask participants to complete both a survey and participate in 90-minute focus group. Most had prearranged transportation and time was limited. In addition because of the nature of the discussion, we felt it was better not to collect data on participants that might allow anyone to identify individuals. This was in keeping with concerns expressed by our Institutional Review Board.
Following several focus groups, individuals asked to speak separately with the moderator after the group session. Examples offered in these individual discussions are marked as INT and were added to the data for that focus group.
Table 2 below provides a summary of the different types of abuse that were mentioned in each focus group, including what participants first mentioned (FM) as well as what was mentioned after probing (AP). Examples of emotional abuse were most frequently (N=43) described in the focus groups, followed by physical abuse (N=30), sexual abuse (N=27), neglect (N=18), and financial abuse (N=17). In addition to these more commonly identified types of abuse, examples were also given that one might not commonly think of when considering abuse. These included examples described by participants as denial of their rights (N=21), including abuse of their right to privacy and their right to bear children, have a girlfriend or marry, as well as situations described as discrimination, and isolation (N=8). Finally several examples of abuse were coded as "other." These included references to self-abuse and situations of abuse directed at people who work for someone with a disability. The latter is similar to what has been defined in the literature as "horizontal abuse" where people become targets of abuse by virtue of association (Sims and Napholz, 1996).
In every focus group, participants provided examples of situations involving physical abuse without the need for additional probes. Participants in five of the six focus groups gave examples of emotional abuse and sexual abuse without the use of follow-up probes. Financial abuse was only described in four of the six focus groups without the use of an additional probe. After asking a follow-up question, examples of financial abuse were provided in only one additional focus group. Even with probing, there was no discussion of situations of financial abuse in one focus group. Examples of situations involving neglect were described in four out of the six focus groups. Follow-up probing did not evoke additional examples of neglect in the other focus groups.
Different ways in which a person's rights are denied were provided as examples of abuse in five of the six focus groups. Situations that were described as abuse using the term "discrimination" occurred in two focus groups. Situations described specifically as "isolation" were given in two focus groups. The examples of isolation involved situations where people are kept away from friends, kept in the house, and prohibited from going to public places.
|FG 1||FG 2||FG 3||FG 4||FG 5||FG 6||Totals|
|Emotional (FM) Note 1||4||21||0||8||6||4||43|
|Sexual (FM) Note 2||9||0||4||1||4||7||25|
|Denial of Rights: Total||2||3||0||1||6||9||21|
|Denial of Rights: Privacy,
right to bear children,
have a girlfriend, marry
|Denial of Rights: Discrimination||0||0||0||0||4||8||12|
Emotional abuse included being threatened or intimidated or being hurt by name calling or ridicule, or being stared at in public. Participants gave many examples of situations involving name calling. Participants gave examples of times when they had been threatened or intimidated as examples of abuse. One individual told the following story:
This guy …. He said that what he wanted to … he was going to tie me up and drag me around the parking lot …. He said … 'You know what I'd like to do to you … I'd like to tie you up.' … And I said, 'Excuse me? Say it again so I can hear you?' So he — then he got nasty with me and said, 'Well what don't you understand?' I said, 'Well, I want … if I'm gonna report you … I want to make sure … that's why I'm making you say it again … I want to understand what you said. He goes, 'All right, all right, 4:30 … … I drag you around the goddam parking lot at school.' FG4)
For example one participant described a situation as abusive when people "… call you retarded or say you're stupid or … they tell you … 'You don't know how to do something … you're no good, you know, you'll never amount to anything.'" (FG1). Participants used examples of being called "retarded," or an "idiot," or being told that they were "dumb" by family members, co-workers and classmates as well as people in the community. One participant asked others in the group, "Has anybody walked up to you and called you a 'fat slob?'" When others in the group agreed, she then said "So I'm not the only one that's alone then." (FG1)
Examples of ridicule and expressed lowered expectations were used to illustrate abuse. A young woman said her mother always told her:
…'You'll never add up to anything because you're disabled. You'll never meet anyone because you're disabled …' That's what my mother used to tell me when I was growing up (FG2).
A number of participants gave examples of people who stared at them in public and referred to this as abuse.
You know, people … when you go out in the community … some people will stare at you like you're some … like you're … like you're a freak … (FG5).
… staring … what they're doing is they don't care about people that are handicapped. They rather hurt them than let them alone (FG5)
One person described "… silent abuse …. when people ignore you. That hurts. It does. When I say I have to go to the bathroom and they won't answer." (FG2). Because the individual referred to feeling "hurt", this situation of being ignored was categorized as emotional abuse rather than neglect.
Participants defined abuse in terms of physical acts committed against people with disabilities, including physical acts such as being hit, punched, pushed, dragged and beaten.
She [mother] would take an extension cord and she would beat me, and beat me and beat me. Or she would use a belt, or she would use a wire hanger, or she would use a wooden spoon … whatever she came in contact with … she beat me with it. (FG6)
… and my father took me by my shirt … threw me against the wall, practically, and he knew I was having seizures at the time. I mean, 'cuz I get, like, I get seizures, I get the grand mal, the really big ones. And um … I had to call my mom from inside her room to um, you know, to come out and my mother had to stop my dad from, you know, from doing that. She like yelled at him and everything, and she was fighting with my dad. But, that's, that is physical abuse right there. (FG1)
I was dating this guy, uh … right? He took me, right, by my arm, swung me around the park. Pushed me in front of a car, and shoved me and gave me two black eyes. (FG1)
Participants described more subtle forms of physical abuse. For example, one woman said, "… they [home health aids] can pinch you and then say, 'Oh, it was an accident.' You know things like that." (FG4)
One participant described abuse in terms of being gagged. He described someone putting something over another person's mouth, "so you won't scream loud. Not here [referring to the agency where the focus group was being held]. But I see it, you know. My family … like they're doing something stupid. My family does it to somebody sometimes." (FG5)
Comments coded as sexual abuse included references to being fondled or touched inappropriately, having someone take off a person's clothing, and forced sex (attempted and actual).
In several of the focus groups, women gave examples of sexual abuse situations involving friends of the family and when they told a family member, they were not believed.
… I was sexually abused. One was my mother's boyfriend. Actually, I think two was my mother's boyfriends. My mother didn't want to believe me, either, but, I was … one of her ex-boyfriends sexually abused me. He, like, he asked me to do it with him, and he … I didn't want to, and he kind a like forced me to do it or tried to, 'cuz he got on top of me and he tried to, and I just kicked him right off a me … Yeah, I was like 19 or 20, something like that. And my mother didn't want, she didn't want to believe me, so I called the police on her, and she got mad 'cuz I called the police on her. We got a police report … and, you know, she was, my mother was going out with him at the time. So, it's not exactly a family member. Still, I don't think people should do that …. like I was telling you before, when I told him no that he was, like, trying to force himself on me, he should've just, you know, when I said 'No' he should've just stopped right there instead of trying to force himself on me. That's, um, what, what, ___ was saying before, that's called rape. He was trying to force himself on me. He was tryin' to do stuff to me, but before he got to do anything, I pushed him off the bed. (FG1)
One man described a situation of being made to take a ride in a truck with a friend of his father's who said "… I had to rub his, you know. And then … and he grabbed me and said, 'You're gonna play with it or I'll smack your face for you ….' I told my brother-in-law, but I didn't know who to tell. I didn't know anybody I could turn to." (FG5)
Not all examples of sexual abuse were ones that occurred within the home. Some examples involved sexual abuse out in the community. One woman spoke about sexual abuse in terms of being made to take off her clothes "… on the bus. Yeah, when he go on it sometimes … he tried to pull my clothes off. He made me do it. He made me do it …." (FG3).
Others gave examples of sexual abuse in institutional settings. One man used the example of a guard who was "… feeling the front of me … And I told somebody but they didn't believe me. They said … the people said that … and they heard that I have … I had a funny family. Stuff like that." (FG5)
Comments coded as financial abuse included more obvious examples of having one's money or other personal items taken by someone, their name forged on checks, or being short-changed at the store. It also included less obvious forms of financial abuse such as the example of a caregiver who charges extra hours for work they don't do and a person being passed over for promotions on the job.
Participants gave examples of caregivers in their homes who took their belongings. One woman said she hides her purse when her aides come over.
I hide it [purse] somewhere, you know, in the house so they can't pilfer, you know, pilfer through it. But, you know, it's weird how they'll just go through things. I've had things missing in my home … not a shadow of a doubt. I knew the person stole it but, you know, it's like what can you do? What can you do? … I've also had them [aides] sign my name to things that I didn't authorize. They signed my name to a time sheet and put in extra hours and I didn't authorize it. (FG4)
Participants gave examples of shopping in stores and being certain they did not get the right amount of change back, yet they were made to feel they were wrong in their calculations.
You give 'em this amount and they give you this amount, and um, you thought it was more money … But it was, and they took you for a ride, because all you saw was paper. (FG4)
Examples of financial abuse also included the person who described a situation at work when someone and is continuously passed over for raises.
I've been working for the same place for 20 years and only got five raises. If you complain … twenty years … Actually, it wouldn't even matter what my job was, twenty years … you should have had more than five raises. (FG4)
Examples coded as neglect included references to being forgotten, as well as caregivers who forget their medicines or who fail to care for their needs in general ways. In one example, the person described living alone and said: "… but I think what I have more or less is neglect. Because I live alone, it's like … oh, they must have forgot I exist. Well I know for myself, I'm homebound so the only time I'm able to get out is basically when I have a doctor's appointment. So other than that I'm basically homebound. I have … there have been times when I have literally been in the house for like 25 days straight because I didn't have a doctor appointment and why couldn't, you know, someone … call or stop by and take me for a walk, a drive around the corner at least to the library. So it's neglect. Yeah, it's like they forget about you." (FG4)
Certain examples of being ignored were coded as neglect when the person did not refer to feeling "hurt" by the situation. One individual said, "People don't listen to me. You know, they don't hear you. And I think that's a form of abuse. You have a right to speak. But they just say, 'OK. OK. OK.'" (FG6).
In two of the focus groups, participants described situations of isolation as abusive. This included examples of not being allowed to visit friends and being kept in the house away from others. One man spoke about being separated from his girlfriend because, in his group home, he is not allowed to visit her. Another participant referred to the isolation a person with a disability experiences when someone is controlling and
… keeps you from interacting with anyone else. They are afraid to speak up for help because they're afraid that the person that's always with them isn't going to like it and they're fearful. It's abuse because they can't be their own person because that fear takes over them. We're constantly seeing people with disabilities as being needy …. So they feel as though they have to, they need it. … so they stay in a situation they probably should get out of it but they can't have it this way. (FG2)
Denial of Rights
Several participants gave examples of situations where the rights of people with disabilities are denied and they defined these situations as instances of abuse. One participant described the situation where a person with a disability is denied the right to have children and keep them.
How about your rights? Well, like … I was pregnant. And, and like you know at that time, the agency wasn't … they didn't have programs for, you know, people that had children, you know. And they're saying, you know, our program's not, we don't have a program for that … and I was … I said to them, I says you know, I said 'You people, you know, you might not have a disability or anything, I said, but let me tell you something, I'm not giving my child up for you. I have my rights. I have rights, just like you have rights. I said, you know, you don't know what we can do, and, if we can raise children or not, unless you give us a chance. I said 'cuz I'm not giving my child up for adoption or anything like that. So I stood up for my rights. And I told the lady, I said to her, I says you know, I says 'How do you know if I could even take care of a child, if you don't give … us a chance to raise a child, how you know we can do it or we can't do it? It's abusive. (FG1)
Another example of denial of rights which was described as abusive involved a situation where an individual is not allowed to speak for themselves or go where they want to go. As one person said, "We are human beings just as right as everybody else are. I mean we can come, go, do what we want, and everything else." (FG2) Several participants described abusive situations where obstacles had been placed in the way of their getting married or being with friends — including friends of the opposite sex.
… I need to get around more freely without the over protection of the group home that I live in. I need more independence for when I am to marry … My mother is trying to overprotect me in every place I go to or decision I make for myself on anything I venture into doing and ___ [his girlfriend] is just as stuck with her parents being the over protection here … I cannot even ride a bike or walk freely at all and it's time for someone to step in and tell both parties to stop destroying my and ___ [his girlfriend]'s independence. (INT4)
Several persons described abuse in relation to invasion of their right to privacy in intimate relationships with others. "Actually, I had somebody walk in on me and at that point I was involved with a person, we were having an intimate relationship and walking around … it's absolutely an abuse of my privacy. I think probably more of that goes on than you realize." (FG4)
Another person gave the example of a situation where their right to privacy was violated when using the bathroom and referred to this as abuse:
… I go to the bathroom. He comes to the stall, opens the door. I said, 'I got it. Thank you. I got it.' 'No I must be here.' I said, 'I have it.' 'No I must be here because anything can happen. I'm not going to lose my job.' 'I've done this before. I have enough mobility to do this by myself.' Do you know that he tried to pull down my pants? And I just said, 'I have it." OK, I said OK. I sat down on the toilet with out having anything down after he locked the door …. I told my brother. He said, 'Who did that?' Then he made me think about it and when I went back I told someone and they said, 'Who is he? Where is he at?' But I didn't have it made because I can't see. You know, I don't know. The fact of the matter is, I can't see. (FG6)
In describing abuse, several participants specifically used the term "discrimination" when giving examples of the denial of rights as abuse. They referred to situations where people by virtue of their disability were discriminated against in applying for a job, as well as wanting to learn to drive, or get an education:
… so they sit there like, 'You can't do it.' … That's discriminate. No, they don't give you the chance to do it. 'Can you read? Can you, do you know how to fill out an application? What would you like to do?' And they … the person that's giving the interview … look at you like you some kind of, like you, some kind of disease. (FG5)
Other Types of Abuse
Several examples of abuse given several times in focus groups were coded as "other." For example, the situation of self-abuse was offered as an example of abuse. The participant gave the example of, "people with disabilities … using drugs and hurting themselves." This was described as "a big issue" (FG1).
Another individual used the term "horizontal abuse" as she described the efforts of neighbors to intimidate caregivers who came to her home:
The neighbors sabotage the cars of care givers who come to the house … they do not want the cars of people who come to assist with care parked in front of their homes. They plow the snow to make it impossible for cars to park there. They put nails under the tires of cars parked there. I call it 'horizontal violence'… I have caregivers who refuse to come to the house because of the harassment from neighbors. (INT 1)
Likely Perpetrators of Abuse
From the examples of abuse given by participants, it was possible to learn something about perpetrators of abuse as well. The initial question asking participants to give examples of abuse was followed by another question asking participants to describe the kinds of people who are likely to be abusive towards people with disabilities. As shown in Table 3 below, 123 examples were given involving known perpetrators. The latter included known intimate abusers (N=46) and known acquaintances (N=77). Known intimate abusers included immediate family members (N=28), foster family members (N=5) or intimate partners (N=13). Known acquaintances included staff in institutions and community caregivers including home health aids. In terms of caregivers, more examples were given involving staff in institutional settings (N=23) than caregivers in community settings (N=6). Other known acquaintances included co-workers and bosses (N=14), other people with disabilities (N=12), friends, friends of the family and acquaintances (N=8), fellow students (N=6), teachers (N=1), health professionals such as doctors and nurses (N=4) and police or security guards (N=3). Only 33 examples were given involving unknown perpetrators (e.g., strangers on the street).
|FG 1||FG 2||FG 3||FG 4||FG 5||FG 6||Totals|
|Identified Likely Perpetrators|
|TOTAL KNOWN INTIMATES||10||13||0||4||10||9||46|
|Immediate Family Note 1||5||10||0||1||7||5||28|
|FG 1||FG 2||FG 3||FG 4||FG 5||FG 6||Totals|
|Identified Likely Perpetrators|
|TOTAL KNOWN ACQUAINTANCES||20||16||4||15||7||15||77|
|Caregivers in Community||0||1||0||4||0||1||6|
|Friend of the family||3||0||0||0||0||0||3|
|FG 1||FG 2||FG 3||FG 4||FG 5||FG 6||Totals|
|Identified Likely Perpetrators|
|TOTAL KNOWN (INTIMATES AND ACQUAINTANCES)||30||29||4||19||17||24||123|
|Ratio of KNOWN/UNKNOWN||2.5||7.2||2.0||19.0||2.4||3.4||3.8|
|% of KNOWN/TOTAL||71||88||66||95||71||77||79|
In one focus group, participants suggested that abusers could be anyone.
Female: "It can be somebody in your own family."
Male: "It could be professional staff."
Female: "It could be somebody on the street." (FG1)
Some participants had difficulty differentiating between known and unknown perpetrators. As one woman suggested, "The one person, he was a stranger to me, 'cuz I didn't know him that good. The one person that sexually abused me was my mother's boyfriend. I didn't know him that good. So, to me he's a stranger." (FG1)
While abuse directed against people with disabilities generally remains hidden from view (it was listed by Project Censored as one of the 25 most underreported stories of 2000) people with disabilities easily identify situations of abuse in the focus groups. They defined abuse much the same way people without disabilities define abuse using examples of physical, emotional, sexual and financial abuse, as well as situations of neglect. They also expanded the definition of abuse to include less commonly considered situations involving limitations of personal rights.
In most situations of abuse provided by participants, the perpetrators were generally known to the person and, in most cases, involved family members. It is important to note that these individuals often serve as major caregivers for persons with disabilities, shouldering significant amounts of responsibility for providing care. While this situation can be understood in terms of the stress this often produces, it should not, however, serve as an excuse for abuse. Participants expressed frustration about abusive caregivers who are excused because of the stress they experience as caregivers. As one pointed out: "'Oh she's stressed out,' like that seems to be more of an excuse for the person who's an abuser because they're care giving someone with a disability, so they must be tired or they're overworked and so that abuse goes on longer because people kind of turn their heads and make excuses when if it were in reverse they probably wouldn't. They would probably be a little more involved." (FG2)
People with disabilities experience marginalization. While people with disabilities are at risk of emotional, physical, sexual and financial abuse, they are likely to be ignored by family, disability and violence-related support systems when they do report abuse. Their marginalization may create a self-destructive sense of anomie or detachment from society and its norms. As one participant lamented, people find it "easier to ignore, neglect somebody who's blind or can't move, or you know, it's easy because people do not listen, you know." (FG6)
An important first step toward addressing this sense of powerlessness and marginalization of people with disabilities is to provide for their voice in the research process itself. In other words, the definitions of abuse should come from those who experience it, not just caregivers and providers. We need to examine the issue of abuse from the perspective of those who experience it. Their descriptions and comments, as shown here broaden traditional definitions, and give a greater reality to otherwise sterile categories. Their insights suggest areas to consider for improving the quality of life of those impacted by abuse. In the past, the issue has been largely studied using only the limited statistics available and data gathered from family members, staff and other caregivers. Our findings suggest that it is important to explore critical issues such as abuse with affected populations themselves.
The findings have implications for research. This research was unique in that every effort was made to include people with disabilities in the research design and data collection process — including involving them in the development of definitions, design of data collection instruments as well as the data collection process. Following data collection, the researchers conducted a follow-up meeting with a group of self-advocacy members to share the findings and obtained their input in terms of next steps. Suggestions included scheduling follow-up meetings with police officers to allow members to discuss their views on abuse. The findings demonstrate the value of using research methods that facilitate the participation of people with disabilities as much as possible. Their contributions served to improve the process overall.
The findings have implications for practice as well. One important way to begin to address concerns about marginalization is to empower people through self-advocacy training — increasing one's understanding of personal rights, of what constitutes abuse — and what is not abuse, as well as the importance of reporting and the process for securing justice. In addition, the findings suggest the need for similar training for families and other caregivers, criminal justice personnel, educators, and employers.
Families, people with disabilities, provider organizations and advocates must work together to enact effective education programs. This educational effort must also target the general public. A wide-reaching, coordinated effort is needed to impact sources of abuse in the community and persons experiencing abuse who remain hidden from view and who are not part of the self-advocacy effort.
Self advocacy projects can collaborate to develop and enact broad training programs with the support of Local Chapters of The ARC and other provider and advocacy organizations in the disability community, including Protection & Advocacy, the Developmental Disabilities Council, university resources and other specific disability organizations. These collaborations are critical. They can encourage discussion among consumers, families, and the larger community. This dialogue is an important first step in the development of training programs and public relations efforts. For example, in New Jersey the Department of the Public Advocate hosts a 'Partners in Justice' committee which includes consumers, providers, and representatives from the criminal justice system. They meet and discuss these issues, share resources, arrange trainings and hold conferences.
Funding for collaborative ventures and training usually falls within the funding criteria of the state's Developmental Disabilities Council. Interested organizations can then provide in-kind support such as meeting space, laptops, projectors, copies, refreshments and staff hours for registration and coordination. Training curricula for self advocates and others have been developed and are easily accessible using the Victims of Crime with Disabilities Resource Guide from the University of Wyoming available at http://wind.uwyo.edu/resourceguide/. The website has a database of training resources and other materials with additional links. Temple University's Institute on Disabilities has also developed curricula for training self-advocates as well as families, caregivers and criminal justice personnel. Their resources are available at http://disabilities.temple.edu/index.htm.
It is important to point out the limitations of this research. The data provided here represent only a summary of the number of times participants used different examples of abuse. The data therefore may include multiple references by the same person to a single event. We made no attempt to tally the actual number of abusive situations discussed and the data are not meant to represent an estimate of prevalence of abuse.
We did not collect demographic data on the participants in the focus groups other than gender based solely on observations. Because our goal was to explore the various definitions of abuse rather than document specific situations of abuse, we felt it was important not to collect personal identifiers on the participants. We wanted to encourage an open discussion. The lack of demographics, however, is a limitation that prevented us from knowing anything about the nature of individual disabilities represented in the sample of participants, or other factors (such as age or living situation) that might be important for data interpretation.
While our research findings reflect stories told from the vantage point of persons with disabilities, it is important to remember that caregivers may also have their own perspective on these stories which is not represented here. We recognize that these situations can be very complex but the purpose of our research was simply to provide the perspective of persons with disabilities since their views are generally not represented in research findings.
The sample of participants in the focus groups was a non-random sample. Participants were people who were participating in pre-existing self-advocacy groups within the community. As such not all people with disabilities in New Jersey had an equal chance of participating in the groups and consequently, the findings cannot be generalized to the population of people with disabilities as a whole. Those who participated were a subset of the population with disabilities. They were people able to attend meetings in the community and willing to participate in a group discussion of this type. These characteristics may make them different from other people who experience greater limitations in their ability to participate in groups. The experiences of people who did not participate may be very different from that of our participants. It is possible that they might have offered different examples of abuse or had no experience with situations of abuse. It is also possible that they might actually experience more abuse than our participants but — because of limited mobility, communication barriers or other factors — they were unable to share their views. If the latter case is the situation, then the findings expressed here may in fact represent only the "tip of the iceberg."
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This research was funded by the New Jersey Council on Developmental Disabilities (Contract #13ML4R). Sue Gottesman, Esq., Legislative Coordinator, New Jersey Council on Developmental Disabilities, provided assistance in planning and implementing the project. Special thanks to Adelaid Daskam and Sam Jenkins of the NJ Self-Advocacy Project who served as co-facilitators for the focus groups and to the participants in the groups who took the time to share their thoughts and experiences on the subject of abuse.
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