Background and Significance

Critical theory is useful in understanding the position of people with disabilities in society (Oliver, 1996; Campbell and Oliver, 1996). This theoretical framework suggests that there is an unequal distribution of resources and power in society, which produces conflict between groups as a consequence of this inequality. People with disabilities (PWD) generally lack resources, skills and opportunities often available to other members of society. They experience this conflict in a variety of forms, including problems of physical accessibility, lack of employment opportunities and lower salaries, and problems accessing health care. PWD 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 and their marginalization places them at a serious disadvantage within the community.

Evidence of this marginalization of PWD can be found in research that suggests that PWD experience abuse at rates 4 to 10 times higher than the rate for people without disabilities (Sobsey, et al., 1995). While research is limited, several other studies have found similarly higher rates. For example, Sullivan and Knutson (2000) found that children with any type of disability were 3.44 times more likely to be a victim of some type of abuse compared to children without disabilities and Crosse et al., (1993) found that children with developmental disabilities were twice as likely to be physically and sexually abused compared to children without disabilities.

Putting the problem of abuse directed at PWD in context, consider that the rate of violent victimization in the United States in 2003 for the population as a whole was 23 per 1,000 persons age 12 or older and the rate of property crime victimization was 163 per 1,000 households. Adjusting these rates upwards by 4 to 10 times, suggests that rates of abuse directed at PWD are likely to be very high.

The extent of abuse directed against PWD remains hidden from view because governmental agencies have historically failed to collect data on the disability status of victims of violence or crime. Historically, the two major sources of crime data in the United States–Uniform Crime Reports and the National Crime Victimization Survey (NCVS)–have not collected this data (National Research Council, 2001). The Crime Victims with Disabilities Act of 1998 now requires the Bureau of Justice Statistics (BJS) to collect data on disability status within the NCVS. In 1999, the Bureau began to develop a plan for adding questions on disability status. BJS has added questions to the NCVS to determine whether crime victims have a disability.  They are now working on their first report based on these data and hope to release the report in late 2005.  

The response of PWD to situations of abuse, likewise, reflects their status as an oppressed group. They have traditionally lacked the power to confront their abusers. Unlike other groups with adequate resources, they are often unable to address abuse by reporting it and seeking redress of their grievances. And the system is less likely to recognize abuse when it occurs and more likely to be willing to overlook it when confronted with it.

PWD often cannot, or chose not to, report abuse. Research suggests that abuse often goes unreported and unrecognized. Sorensen (1997) analyzed data from the California Adult Protective System compared with National Crime Victimization Survey data and estimated that only 5% of crimes against PWD were reported to authorities in California, compared to an average 44% rate of reporting for the population as a whole. Wilson and Brewer (1992) found that 40% of violent crimes went unreported by people with mild mental retardation and 71% by persons with severe mental retardation, compared with 56% for the general population. Sobsey and Doe (1991) studied 162 people with a range of disabilities and found infrequent reporting of crimes to authorities. Studies in institutionalized populations suggest similar underreporting. Powers et al., (1990) found that between 80 and 85% of the criminal abuse of residents went unreported to authorities.

Factors that help explain this failure to report include fear of further victimization, fear of losing a needed caregiver (Curry and Powers, 1999; Erwin, 1999) or of reprisals from administrators in institutional settings (Helms, 1990), an inability to report because of communication barriers (Berliner, 1993), an inability to convey all the details of the incident (Buchele-Ash, et al., 1995), or an inability to escape or find a safe location (Swedlund and Nosek, 2000). Tharinger et al., (1990) confirmed the tendency within the system (schools, institutions, criminal justice personal) for people not to report sexual assault involving people with developmental disabilities compared with the population as a whole. Finally, Sobsey and Doe (1991) found that PWD chose not to report because they believe nothing will come of their reporting.

Research also suggests that even when PWD report abuse, they are often not believed. As with other marginalized populations (e.g., women, the poor, people affected by HIV/AIDS), the concerns of PWD are discounted because of their lack of power. Tharinger et al., (1990) observed the tendency for people not to believe persons with disabilities when they report abuse or to feel that the person would not make a believable witness. As a marginalized group, PWD experience frustration when reporting abuse. Advocates for PWD are often unwilling to believe the extent of the problem. Many refuse to recognize the sexuality of the person or to consider the possibility that others would take advantage of a person with a disability.

While an inability to address their exposure to abuse can be explained conceptually, an understanding of how PWD react to abuse as well as an exploration of the extent to which they feel powerless to remedy their situation needs to be examined in order to connect this larger social issue with their daily lives. This paper attempts to explore these issues with PWD.

The overall goal of our research was to develop a better understanding of abuse directed at PWD–from their perspective. In particular, we wanted to learn about types of behaviors identified as abusive, reporting behaviors and perceived outcomes. This paper focuses on the issue of reporting behaviors and outcomes in situations of abuse. We were interested in learning if PWD report abuse when it happens, and if so, to who do they report abuse and what do they see as the likely outcome when they report?

Research Questions

Do people with disabilities report abuse?
If yes, to whom do they report and what is their perception of the outcome?
If not, why do they choose not to report?

Methodology

In 2004 six focus groups were conducted with members of New Jersey consumer self-advocacy groups to explore the issue of abuse directed at PWD. Two self-advocacy organizations helped recruit participants for the focus groups: the "Monday Morning Networks" organized by the NJ Council on Developmental Disabilities (NJCDD) and the NJ Self-Advocacy Project of the Arc of New Jersey. Both organizations consist of networks of groups that meet regularly around the state. Their members are adult consumers ages 18 and older with a range of disabilities, including physical and cognitive disabilities. While some members involved in these groups were former residents of institutions, members are all currently living within the community either independently or in supervised living settings.

Recruitment took place with help from the self-advocacy organizations because we felt their members would be more willing to talk about the issue of abuse and share their views on reporting. Furthermore, if they felt their concerns were not being taken seriously, it is likely that those less vocal have even greater challenges to surmount in being heard.

Focus group questions were drafted and pre-tested with several members of the New Jersey Self Advocacy project and then revised. Focus groups were conducted around the state. Groups were held in Elizabeth, Newark, North Brunswick, Ewing, Vineland, and Somers Point. Groups were facilitated by the principal investigator and co-facilitated by a graduate student and a member of the self-advocacy community who was assisting with the project. Having the self-advocate serve as co-facilitator made entry into group meetings easier. Our co-facilitator helped answer participants' questions and helped make participants more comfortable during discussions.

Focus groups were held in physically accessible locations around New Jersey such as the offices of a disability organization, in a library meeting room, or a city municipal building where the self-advocacy groups meet on a regular basis. In most cases, transportation was prearranged by the self-advocacy groups; however, where assistance with transportation was needed, the necessary arrangements were made.

Institutional Review Board approval was received for the study. The purpose of the study was explained at the start of each meeting and then participants were asked to only initial a consent form if they wished to participate. Alternative activities were available for persons who did not want to participate. Focus groups lasted one and one-half hours on average. At the conclusion of the focus group, each participant received a small incentive to thank them for their participation.

In the focus groups, abuse was generally defined as "seriously wrong things some people do to PWD. These things are considered wrong by the PWD, 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 with help from staff at the statewide ARC of New Jersey and after discussions with several people with disabilities.

The facilitator encouraged participants to offer general examples of types of behaviors or actions they considered abusive. People were told they did not have to talk about anything they were not comfortable talking about in front of others. When examples of abuse were provided, the facilitator did not press the individual to determine if the situation was one the individual had personally experienced or whether it involved someone else. Counselors were available at meetings to discuss situations that came up where people felt the need to talk further after the group discussion. A counselor intervened after a focus group to discuss the situation further in only one session.

Participants were also asked to describe characteristics of people who are abusers and settings where abuse was likely to happen. They were asked whether PWD report these types of situations, why or why not, and what happens when they do report. The focus group ended with a general discussion of things people can do to be safe from abuse.

With permission of the participants, all sessions were audiotape recorded and tapes were transcribed. The researchers then conducted a content analysis of the major themes in the transcripts using Atlas.ti (Version 5.0). This software program helps with the process of coding narrative for themes and sorting the findings. In our content analysis, a series of initial codes were created based on major themes found in the literature. Then while reading the transcripts, additional themes were identified and used. A graduate student created a series of codes in Atlas based on the themes and applied these codes to each transcript in Atlas.ti. Her coding was then compared with coding done by the principal investigator to assure agreement in the application of codes. Disagreements were discussed and resolved. Figure 1 below generally summarizes the areas of inquiry and major themes used in coding the transcripts in Atlas.ti.

Types of abuse were coded as physical, emotional, sexual, financial, neglect, denial of rights and other. Abusers were coded as either unknown or known. The latter included family, friends, institutional staff, community caregivers, students/teachers, health professionals, coworkers/boss, police/security personnel, or other PWD. Settings were coded as home, community, work, school, institutional, or correctional. Comments regarding examples of abusive situations were coded as "reported-yes" or "reported-no."

Events that were reported were also coded for whom they were reported to, including family, friend, staff, health professional, police, or other. Reasons for not reporting were coded fear of retaliation, fear of losing caregiver, fear of not being believed, and not knowing to whom to report. Outcomes from reporting were coded as disbelief, no follow-up and follow-up.

The data reported below represent the frequency distribution of codes based on themes that were discussed in each focus group as identified in the coding scheme outlined in Figure 1. Atlas.ti allows the researcher to group all coded passages by code/theme and then run individual and summary frequency distributions. 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, represents 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 may include multiple references by the same person to a single event.

Figure 1. Coding Scheme

For text description of Figure 1, click here.

Findings

A total of 60 people participated in the six focus groups, including 15 men and 45 women (Table 1). No additional demographic data were collected from participants. Focus groups ranged in size from 6 participants to 23 participants. One focus group included primarily severely cognitively impaired people. This group was also very large and consequently yielded very little useful information because of the difficulty of probing comments and providing sufficient explanation of the questions.

Table 1. Focus Group Participants

Discussion

The comments of participants in our focus groups suggest that PWD do report abuse (Table 4). Many described situations in which abuse was reported–primarily to family, police, and agency staff. However, reports of abuse often were not believed because of a person's disability status or because precedence was given to maintaining family relationships. Less frequently, participants said they did not report abuse because they were fearful of further reprisal or losing a needed caretaker. As a consequence, people said they were often willing to tolerate a certain level of abuse.

Participants often described some kind of follow-up to their reports. For example a family member was supposed to have contacted the police, or police or agency staff took action against an abuser by either arresting the individual or letting the employee go. Few, however, were certain what happened eventually to the abuser. Several participants expressed concern that when an agency fired an employee who was abusive, the abuser simply went elsewhere to another program and found work.

Table 4. Critical Findings

In focus groups with PWD:

• Participants said:
• They report abuse when it happens.
• They are often not believed when they report abuse.
• While they say some action was taken when they report abuse, they are not clear what happened to the abuser.
• When they do not report abuse it is because they:
• Feel they will not be believed
• Fear retaliation
• Fear losing a caregiver and feel they must tolerate a certain level of abuse to maintain their caregiver

PWD often lack necessary resources that would allow their voices to be heard. Many PWD have not been empowered through self-advocacy training. These programs help provide the skills needed to know one's rights and what to do when they have been violated. Even among trained self-advocates, many people still lack these skills, which suggests that general self-advocacy training alone may not be sufficient. More specific training on the topic of abuse (e.g., what constitutes abuse, settings where people are vulnerable, likely abusers, to whom to report, and likely outcomes) is needed.

Because abuse directed at PWD remains hidden (by lack of statistics, lack of reporting, inability to report or an unwillingness to believe people would abuse PWD), PWD enter a state of what Chenoweth (1997) refers to as "extreme marginalization." They are placed at risk of emotional, physical, sexual and financial abuse and are likely to be ignored by family, disability and violence-related support systems. When they report abuse and are not believed, this marginalization may create a sense of self-destructive anomie wherein PWD are likely to feel even further detached from society.

This research was unique in that it provided people with disabilities with the opportunity to share their thoughts and ideas on abuse directed at PWD. In general, participants were very willing to participate in the discussions and happy to be able to tell their stories. The research was also unique in that every effort was made to include PWD as much as possible in the research process–including involving them in the review of the questions to be asked as well as having them serve as co-facilitators in the groups.

The research suggests that it is important to explore a critical issue such as abuse directed at PWD not only through available statistics, but also in discussions with affected populations (Table 5). Too often, the issue has been studied based only on reports of abuse or from the perspective of staff working with PWD. In addition, allowing PWD to participate as much as possible in the design of the research process and the data collection process is valuable. Following data collection, the researcher met with the participants in the focus groups to share the findings and obtain their ideas of what to do next. One suggestion has been to schedule follow-up meetings of group members with police officers to encourage their understanding of the problem of abuse PWD often face.

Table 5. Implications for Practice and Research

• Practice: The findings suggest the importance of:
• Training programs which explain the rights of people to PWD and which encourage them to report abuse
• Training programs for family, staff and police which sensitize them to the issue of abuse directed at PWD
• Research: The findings demonstrate several things:
• The value of adding findings obtained from research conducted directly with PWD to the body of research that examines the problem of abuse from reports of abuse
• The value of including PWD as active participants in the research process

In terms of practice, the findings suggest the critical need for development of self-advocacy training programs that focus specifically on personal rights, the nature of what constitutes abuse, and the process for securing justice. It also suggests that training for caregivers and police to sensitize them to the problem of abuse is also needed.

It is important to point out, however, the limitations of this research. The sample of participants in the focus groups was not a random sample, but rather people who were already participating in pre-existing groups in the community. All people with disabilities in New Jersey did not have an equal chance to participate in one of the groups and the findings consequently cannot be generalized to the population as a whole. The people who did participated were a subset of the population with disabilities. Their ability and willingness to attend meetings in the community may make them different from other people who have more restrictions on their ability to participate in groups. The experiences and views of people who did not participate could be different from our participants in many ways. They may have little or no understanding of abuse and/or no experience with situations of abuse or they may actually experience more abuse than our participants but be prevented from coming out and sharing their thoughts on this subject because of mobility or communication issues, or because they are prevented from attending these types of gatherings.

It should also be noted that the data provide only a summary of the number of times participants discussed reporting behaviors. No attempt was made to tally the actual number of abusive events. The data therefore may include multiple references by the same person to a single event.

No demographic data were collected on the participants in the focus groups. Only data on gender was collected through observations. Because of the sensitive nature of the discussion, it was considered important not to collect personal identifiers on the participants in order to encourage people to feel comfortable in the discussion. This limitation prevented the researchers from knowing anything about the nature of the disabilities represented in the sample of participants, or other factors (such as age or living situation) that might be important in interpreting the data.

In conclusion, the problem of reporting abuse discussed here represents the perspectives of people with disabilities who have been trained as self-advocates. The fact that they felt their concerns were often not being taken seriously when they reported abuse, suggests that the problem of reporting is an even larger concern for persons who are less vocal. As such, the problems discussed here are likely to represent only the "tip of the iceberg."