Reducing the Risk of Abuse

What is abuse?
What are the risks of abuse for people who use AAC?
What AAC users tell us

In order to stop abuse, we need to first acknowledge that it happens. We need to recognize it for what it is and know how to respond to it. We cannot always stop abuse from happening, but we can reduce the risk of its occurrence by creating safe environments, by providing information and ways of communicating about sexuality and abuse, and by encouraging a sense of personal dignity and self-worth.


What is abuse?   [Top]

Abuse is behavior that is used to coerce, dominate or isolate the other person. It is any form of power that is forced on one person over another to maintain control in the relationship. Often abuse is subtle and can take many different forms. For example, it is abusive to limit someone’s communication by taking away his/her communication device or to censor the words that are available to an adult in his /her AAC systems. It is emotionally abusive when someone makes fun of someone else, calls them names or humiliates them. Abuse can sometimes be physical, such as handling someone roughly when transferring them or pulling their hair or pinching. Sexual abuse means forcing a person to engage in sexual activities without her/his consent. Sexual abuse can also be seen as a denial of one’s right to be sexual or not allowing someone to have information about sex or sexuality.


What are the risks of abuse for people who use AAC?   [Top]

The high prevalence of abuse and crimes against people with disabilities has been widely documented, yet there are very few studies that have looked specifically at the risks and experiences of AAC users for victimization (Farrar, 1996; Tamura & Webber, 1992; Balandin, 2002; Borthwick, & Crossley, 1998; Bryen & Frantz, 2000; Bryen, Carey and Frantz, 2003).

Circumstances that inhibit the detection and disclosure of offenses against people who use AAC include – the lack of vocabulary – or the means to disclose; lack of competency in communicating effectively on the part of police and justice system in responding to disclosures; lack of perceived credibility if the person does tell; lack of accommodations within the judicial system to provide access to justice; vulnerability resulting from one’s reliance on care givers for daily care, and lack of accessible shelters and supports etc. These factors contribute to the increased vulnerability for people who use AAC, and decreases the number of disclosures which in turn severely underestimates the extent of this problem.

Research tells us that people with physical disabilities combined with severe speech disorders are 2-6 times more likely to suffer physical, mental and sexual abuse as a result of their inability to communicate effectively (Sobsey, 1994). Many victims who cannot communicate are often not able to prevent or report abuse. Without access to the words they need to communicate people who use AAC cannot discuss, learn about, disclose or report issues relating to victimization. (Farrar 1996). We also know that a higher risk of sexual abuse appears to increase with the amount of disability experienced (Sobsey & Varnhagen, 1998); that most abuse happens where the person lives; that most offenders are known to the individual and usually in positions of care and trust. (Brown & Mirenda 1997, Sobsey and Doe 1991).

People with physical disabilities and who use AAC may have many attendant service providers providing personal care assistance on a daily basis. While the majority of people are not abusive, it is important to be cautious of the fact that the risk for abuse increases with the number of encounters one has with different people - particularly with people who are providing intimate personal services such as bathing, dressing and having access to one’s personal space and belongings. People who use AAC and rely on personal attendants may have difficulty getting out of an abusive situation because their living space is often integrated with their personal services. And if they are able to find accessible safe space, the attendant services are typically not transferable.

Offenders often seek people that they perceive to be vulnerable and isolated from services and support. Negative attitudes, misperceptions and stereotypes about people with disabilities and a subsequent history of oppression put people with disabilities at an increased risk to experience sexual abuse. (Wisconsin Coalition Against Sexual Assault.)

Some people who use AAC tell us that they are treated like ‘children’ and subsequently, are offered few opportunities to learn about taking ‘risks’. When someone else decides what is best for a person who uses AAC, they send a message that tells that person that he / she is not capable of making decision. This can impact on one’s self-esteem and sense of autonomy. Decreased self-esteem and the lack of exposure to information about healthy sexuality, relationships and abuse increases one’s risk for exploitation and victimization.

In addition, some AAC users, learn at an early age that in order to get the services they need, it might be necessary to be compliant with others who appear to ‘know what is best”. Within this context, they might not have had good role-modeling around setting boundaries or may not have been encouraged in the belief and value that she/he has the right to say no to painful or unwanted touches.

Throughout the Speak Up Project, people who use AAC told us that they grew up without receiving information and education about sexuality, abuse prevention education, and personal safety strategies. This can increase someone’s risk for abuse as there is a lack of acknowledgement of the individual’s personhood and right to live life free from violence and abuse. Public classes for self-defense and abuse prevention are generally not adapted to accommodate individuals with disabilities, and in particular, persons who are AAC users.


What AAC users tell us:   [Top]

It is difficult for anyone to communicate about abuse and especially for those who have or may be experiencing it within their lives. As the project progressed, participants within Speak Up gradually communicated about their experiences in a context where they felt safe, supported and understood. For some participants, they learned to identify with other people’s experiences and in many cases to recognize that what they had ‘accepted as normal” were in fact abusive infringements of their human rights.

The following issues are some of the recurring themes that emerged from 27 adults who use AAC within the Speak Up project.

• The majority of participants had experienced and continue to experience various forms of abuse.

For some this has been a source of emotional anguish throughout their lives, for others the realization of abusive behaviors emerged during workshop discussions and through identification with peer stories and feelings. Common forms of abuse included denial of the right to personal autonomy and decision making, threats, withholding of essential services and needs, ‘silent treatment”, invasion of privacy, degrading comments, put downs etc. Some of these behaviors can be subtle, such as denying people with disabilities access to sexual health information or services. Other forms of sexual abuse include forcing someone to be sterilized so they won’t get pregnant or when a caregiver engages in sexual touch while helping someone with a bath or getting dressed.



• The majority of people who use AAC do not have the words they need in order to communicate about abuse.

  Lack of vocabulary, communication skills and people with whom to communicate with about abuse increases the vulnerability of AAC users by providing no outlets to disclose or report abuse. More research is required to identify the abuses experienced by persons who use AAC in order to represent these experiences on their communication systems. Many forms of abuse are considered infringements of human rights and dignity and may not be reflected in a vocabulary of civil and/or criminal offenses.

  
  
• People who use AAC may not be believed if they do disclose abuses or their disclosures are dismissed without appropriate action.

  One participant who was raped by a resident in a group home, reported this to the group home supervisor. He was told “What do you expect, he (the offender) can’t help it, he doesn’t know any better”. No action was taken and no supportive counseling was offered to the AAC user. People who use AAC, frequently tell us that although they may know the complaint process, there is usually no intervention taken and therefore no reason to complain or “rock the boat”. Often times, people are left with few if any supports, after making the complaint.

  
  
• People who use AAC are afraid to disclose to managers within attendant service agencies for fear of reprisal from staff members due to a pervasive culture that does not protect their privacy.

  One participant disclosed their experience of unwanted sexual touch from a staff member, which resulted in a conviction two years later. After reporting the incident and awaiting trial, the person communicated about their experience of being shunned, put down and mistreated by other staff during that period of time. There are no accessible shelters for people who use AAC and no alternate living arrangements beyond family support.

  
  
• Few people who use AAC have pursued civil/criminal interventions for abuses.

  AAC users tell us that the justice system does not accommodate their needs. By failing to do this, the system may actually increase their vulnerability. An AAC user disclosed a sexual abuse incident to the police, using partner assisted scanning on his word board. The police did not pursue the matter based on their perception that he would not be “a credible witness” in court. The staff person was fired and later sued the agency for wrongful dismissal. He does not have a police record and can continue to work within the system.

  
  
• People who use AAC cannot access abuse services that are available to the general public.

  Most abuse programs are designed to address the abuse of women. While many of these services recognize the need to provide comprehensive services for men who have experienced abuse, there continues to be very few services for men. Additionally, many services are not adequately addressing the needs of women living with disabilities. Within the context of ‘domestic violence’, the focus is on spousal or intimate partner relationships and does not extend to addressing issues within the context of the attendant/caregiver relationship.

  
  
• Many attendant service agencies increase the vulnerability of AAC users within their service by having inconsistent, undocumented policies and practices relating to assistance with sexuality.

  Some people who use AAC have questions about an attendant’s role in assisting a consumer with sexual activities such as preparation, positioning, using safer sex supplies, birth control, masturbation, etc. Sexual assistance refers to attendants providing assistance to consumers who are engaging in consensual sexual activity. The Speak Up Project does not support attendants engaging in sexual activity with consumers. Some attendant services will support a consumer in sexual assistance and many more will not. There is no consensus amongst and within attendant services about these activities, and there are very few clear policies in existence despite evidence that policies facilitate safety for everyone involved.

  
  
• Adults who use AAC recommend that parents, families and service providers support youth who use AAC in acquiring vocabulary, information and skills to reduce their risk for all types of victimization.

  Most of the participants within the Speak Up project reported that they wish they had had the opportunity to discuss issues relating to sexuality and safeguarding earlier in their lives. They felt strongly that such support should be provided to youth and recommended opportunities for peer interactions / mentoring either on an individual or group basis.

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