This report addresses violence and sexual abuse against persons with intellectual disability or impairment of both sexes and all ages. We have reviewed articles on violence and sexual abuse in the context of close relations with the intention of getting more knowledge about the extent and nature of such abuse.
We aim to:
- Present a workable definition of intellectual disability, violence, sexual abuse and neglect
- Present knowledge on the scope of violence and sexual abuse against people with intellectual disability in close relations
- Give a description of the circumstances where the violence takes place, the relation between the victim and the person who perpetrate the violence and of specific age- and gender related factors
- Touch on the barriers people with intellectual disabilities may encounter when trying to seek help
- Propose further research
The terminology: Intellectual disability, violence, sexual abuse and neglect
In this study intellectual disability is understood as a congenital condition affecting an individual’s cognitive and intellectual abilities, or a condition that originates from disease or bodily harm during the years from birth to the age of 18. However, intellectual disability is mainly understood as a social creation. While a person may be impaired from birth, obstacles in social life and certain ways of understanding his or her impairment and place in society, may lead to disability.
Violence is used as the key term in the report. Our reasons for this, is the growing similarity between the notion violence with the notion abuse. Some researchers argue that the word violence connote a seriousness of the acts, whereas the word abuse does not. However, as ever more acts have come to be understood as violence, any difference between the word violence and the word abuse seems to be erased. Consequently we advocate the need to specify the acts included when talking about violence. Violence is understood as all acts with the potential of doing physical damage, as well as acts of belittlement and harassment, what is often called psychological violence.
The notion «violence in close relations» has been in use in Norway for approximately the last ten years, and more or less covers what is internationally known as domestic violence, family violence and intimate partner violence. The state appointed Norwegian Commission on Violence against Women coined the notion men’s violence against women in close relations to describe the serious and recurring violence men have committed against women in marriages and/or in intimate partnerships. In this report we need the broader definition of violence in close relations. The violence is committed against women as well as against men and children of both sexes, by both men and women. Given the nature of the lives of many with intellectual impairments, «violence in close relations» does not just refer to violence committed by, or towards, a partner, parent, child or other relatives. In this context, such violence may also be perpetrated by employees providing a broad spectrum of services to people with intellectual impairments, as well as by neighbours and others who, in one way or another, are taking the role of care givers. People with intellectual impairment who themselves are service users, also commit violence against their peers. Research shows that in most cases, people with intellectual impairments know the person who commits the violence. The violence covers many expressions – from the serious and repeated violence that has been called intimate terrorism to violence that occurs sporadically and most often as a consequence of conflicts in close relations, referred to as situational couple violence. Because of our wide definition of «close relations» the review also includes violence outside of romantic partnerships.
Although being a form of violence, sexual abuse is treated apart in this review. We have also chosen to keep the notion sexual abuse as opposed to sexual violence or sexualised violence. The notion sexual abuse is well known in Norway and is the one most used in the articles we have reviewed. In the review, sexual abuse is understood as: Someone misusing their power and authority as well as the dependency of another person, in order to obtain sexual relations that benefit themselves. In addition, the person whose integrity is insulted does not understand or is too immature to be subject to and/or to consent to, the sexual acts committed. The sexual behaviour is gintellectual disability, violence, sexual of enerally also a break with conventions in the actual society and in most cases criminalised. A mark of both violence in close relations and sexual abuse, is that the acts may be perpetrated repeatedly.
The notion of neglect is not included in our understanding of violence. Although potentially as damaging as different forms of violence and sexual abuse, neglect is considered an omission or a failure to do something, rather than a conscious act to harm someone. The neglect may take the form of failure to provide to someone’s physical needs, for example enough food or warmth, or to someone’s psychological need for companionship and social contact.
The extent of violence and sexual abuse
It is consistently maintained that people with intellectual disabilities are more often subjected to violence and sexual abuse than the population as such. This is said to apply not only to women and children, but also to men. However, looking at existing research, it is difficult to find good evidence for such a contention. The question of «how many people with intellectual disability who are subject to violence and sexual abuse» is in itself difficult to answer. It also appears that the occurrence of sexual abuse has been the subject of more studies, than the amount of violence in close relations as we have defined it here.
Accordingly, we have limited results regarding this kind of violence. We do however have reason to claim that the perpetration of violence and sexual abuse against people with intellectual disabilities is a considerable problem. The more recent studies underscores the fact that people with intellectual disabilities are subjected to at least the same amount of violence and sexual abuse as the population in general.
Regardless, most researchers reviewing reports point to several shortcomings in the studies of the extent of violence and sexual abuse against people with intellectual disabilities, shortcomings we too have found in our review. Methods vary greatly, as do definitions of the notions «violence» and «sexual abuse». Some studies leave much of the defining to the respondents, making it difficult to know what is being measured. Research has also shown that some people with intellectual disabilities hold notions of violence and sexual abuse that in no way correspond with the definitions of the researchers. This represents another source of error. The majority of the studies are based on clinical «populations», accessible selections, or selections based on people volunteering to take part in studies. Most of the studies are limited, meaning that few people take part in the studies. These – and other – factors make the studies difficult or impossible to compare. In total we therefore know little, both about the actual extent of violence and abuse against people with intellectual abilities, and about the development in prevalence of such violence.
A particular problem in this context, relates to who is reporting the violence and abuse. As verbal communication is difficult for some people with intellectual disabilities, the violence is often reported by a third person. In many cases there is no evidence that abuse has taken place, and reports are based on beliefs or assumptions. There are at least two risks involved in this picture: Firstly, too much violence may be reported, but on the other hand there is a risk that violence and sexual abuse against people who lack the ability to communicate well, may be overlooked.
It may also be that some people with intellectual disability do not consider certain acts to be violence, and refrain from reporting even if they are able to do so. In some cases people may not wish to report the violence or abuse.
Specific traits of violence and sexual abuse against people with intellectual disability
Despite the fact that it is difficult to give qualified measurements of the prevalence of violence and sexual abuse in our context, many of the studies we include in our review, are sources of knowledge as to the phenomenon «violence and sexual abuse against people with intellectual disabilities» as such. As our review comprises people of all ages and both sexes, we deal with children and adults separately when describing certain characteristics of the violence.
The children
The younger the child, the greater seem her or his risk of being exposed to violence and sexual abuse in the home by a person known to the child. If difficult life experiences make one or both parents struggle in everyday life, if the family is burdened with economic or other problems, or if mother or father is exposed to violence by a spouse or partner, there may be an augmented risk. Children with intellectual disabilities can, however, be particularly vulnerable under such circumstances. According to research, having a child with intellectual disabilities is potentially strenuous, mentally, socially and economically. Many of these children will often need extra care and looking after, and their behavior may tax the energy of the caretaker.
As children grow older, they may become more exposed to violence outside the home. The risk of exposure is generally greater for boys – girls are more often subject to violence in their own home or in the home of others, even as they grow older. This also holds true for children with intellectual disability. On the other hand, many children and young people with such disabilities lead a more protected – as in «controlled» – life than children and youngsters in the remaining population.
Consequently the situation for young boys with intellectual disabilities can be likened to that of the girls. These boys are more likely to be subject to violence and sexual abuse at home and by someone they know well, than boys in the general population.
Studies show that most of the violence against children with intellectual disabilities is perpetrated by boys and men. There is, however, reason to believe that the number of women who commit such violence is underestimated. Research shows that mothers perpetrate violence against children just as often as fathers, that mothers subject their children to violence more often than fathers when the family is in deep trouble socially and economically, and that girls in general are more subjected to violence by their mothers than by their fathers. We have reason to believe that this is also the case for children with intellectual disabilities.
Standing on insufficient grounds, we cannot say that children with intellectual disabilities are more subject to violence and abuse in their family home than children in general. On the other hand, research show that children with intellectual disability run a greater risk of being exposed to violence by caregivers, support persons and other people they know outside of the family. In such cases we are often talking about sexual abuse.
When it comes to sexual abuse, girls seem to be more exposed than boys. Girls’ risk of being subjected to such abuse seems to increase up to a certain age, whereas the risk for boys seems to diminish as they grow older. On the other hand, boys with intellectual disabilities are considered to be more at risk of sexual abuse than boys in the population as a whole, even though the figures are uncertain. Boys with intellectual disabilities are seen as more at risk of physical violence, while girls with intellectual disabilities seem to be more exposed to harassment, belittlement and disparagement, acts often described as psychological violence.
The adults
The fact that studies of sexual abuse are more numerous than studies of intimate partner violence also goes for the adults. This may be partly due to the focus on sexual abuse seen in research in this field, but may also be attributable to the fact that lasting, well established relations between man and women (or homosexual relations) seem to be less common among people with intellectual disabilities than in the general population.
As already mentioned, most acts of violence and sexual abuse against adults with intellectual disabilities are perpetrated in the homes, and by someone known to the victim. Accordingly the situation differs from that of adults in the general population, especially from that of men, who are most often exposed to violence in public spaces. We do not know how many adults with intellectual disabilities who live in their natal home today, but we do know that those most in need of care and assistance rarely live alone. Following the closing of institutions that started in the 1990’ies, many with intellectual disabilities share housing premises with others in similar situations and/or with other forms of impairments and difficulties. The housing units can resemble student residences, where each person has her own room, while kitchens and living rooms are being shared. Several apartments in large units located in the same area constitute another type of housing for people with intellectual disabilities. The violence that adults with intellectual disabilities are exposed to may be perpetrated both by caregivers and by other residents.
As is the case for girls, the grown women (age wise) with intellectual disabilities are more often subject to sexual abuse than the men. We must however take into consideration the possibility that few cases of sexual abuse against men with intellectual disabilities become known.
Research shows that women who are little or moderately impaired are most at risk of being subject to sexual abuse, but again we must consider the fact that some women with intellectual disability may have trouble communicating such exposure. To the extent that grown men with intellectual disabilities are exposed to sexual abuse the abuse is often perpetrated by other men. Researchers have pointed to an element of learned behavior here. Supposedly the staff in the former institutions did not bother too much with preventing sexual acts between men. Instead they concentrated on keeping women and men separate. Men who spent a period of their life in such institutions may therefore look upon sex between men as an «ordinary» practice, even when there is no question of homosexuality.
Regarding violence in intimate relations the situation for women and men with intellectual disabilities seem to have much in common with that of women and men in the population at large. Men appear to be exposed to situational couple violence as often as women, while women are more exposed to violence with at high potential of injury. We must, however, take into consideration the fact that serious intimate partner violence against men may be underreported. Cut and dried notions of violence in close relations and intimate partner violence can lead to less interest in the question of serious violence against men in general.
We may conclude that the violence that befalls people with intellectual disabilities mostly occur in places where one ought to feel safe, and is largely perpetrated in close relations as we have defined that notion here.
Risk factors – particular vulnerability to violence and sexual abuse Although people with intellectual disabilities are very different and do not merit being described as a «group», they are generally regarded as more vulnerable to violence than the general population, children being the exception. One reason for such a view, are the mental and intellectual capacities, which in some cases make it relevant to compare people with intellectual disabilities to children. This also entails that the more serious the intellectual impairment, the more vulnerable the person is considered to be. Still, having a milder form of intellectual disability also seems to constitute a particular risk of being exposed to violence and sexual abuse, both for women and men.
As we have already touched upon, the behaviour of the person who is subjected to violence may sometimes be regarded as provocative and difficult to deal with. Among other things, research shows that people with intellectual disability sometimes perpetrate violence against their caretakers. Such behaviour can lead to retribution from the caretaker. Some people with intellectual disabilities also show other types of challenging behaviour. The behaviour may be attributed to the impairment or can be a result of psychological problems, which are said to be quite common among people with intellectual disabilities. Saying this does not amount to us justifying or legitimating the use of violence against a person with intellectual disability, nor does it make her or him responsible for the violence.
People with intellectual disabilities sometimes find themselves in difficult social and economic positions, although poverty – often connected to different types of violence – may not be as common for people with intellectual disability in Norway as in many other countries. Nevertheless a social (and sometimes economic) situation may give an augmented risk of being exposed to violence and sexual abuse. A life lived apart – on the side of society, so to speak – is the reality for many with intellectual disabilities, and can make a person particularly vulnerable. The violence perpetrated in the home and by someone known or close to the victim, is also difficult to detect unless she or he talks about it to others. Being dependent on others, which is the case for relatively many with intellectual disabilities, adds to the vulnerability. Researcher and practitioners also claim that people with intellectual disability live with a strong wish to be «like everyone else». Consequently some might put up with being badly treated rather than giving up a close relation. One last factor to be mentioned is what is often described as unconditional or blind obedience, by some referred to as learned helplessness. A relationship where violence or abuse is perpetrated, often bear the marks of power differences. However, many people with intellectual disabilities have been taught to respect the opinions and actions of adults and other people of authority without questioning them. Such blind obedience can also be a risk factor.
Access to medical, social and legal interventions and help schemes This subject of access to different types of interventions and help schemes is just touched upon in this review. The main reason for this is the work of Zachariassen and colleagues (2013) on interventions in cases of sexual abuse. It must however be said that people with intellectual disabilities in many cases will have trouble accessing help. The degree of intellectual disability can be a factor as well as the situation itself or aspects of the help (or control) schemes themselves. Some will have trouble reporting, others do not wish to disclose the violence. The legal system may serve as an example of how aspects of the schemes themselves can represent an obstacle. The strong demand for evidence in legal cases can put people with intellectual disabilities in the same situation as children facing the legal system. The value of children’s testimonies has been questioned again and again. The fact that some people with intellectual disabilities have limited cognitive capacities, imperfect understanding of certain notions and of the aspects of time have also made them look like questionable witnesses in the eyes of the legal system. However, these views seem to change as new research proves them to be misconceptions. On the other hand it is a fact that cases of violence in close relations in general are often dismissed by the legal system.
Recapitulation and recommendations for further research
Despite the «wholes» in research on the situation for people with intellectual disability, the picture of a particularly vulnerable «group» of people seem to hold up. The vulnerability is due both to the disability itself and to the way people with intellectual disabilities are viewed and treated in society.
We may also conclude that people with intellectual disabilities are as exposed to violence as the population in general and probably more exposed to sexual abuse. The violence is mainly committed in the homes and by people who are in one way or the other close to the victim. The situation seems worse for women than for men regarding the actual deeds, although we are saying this with reservations.
Precisely because many people with intellectual disability face particular challenges and can be especially vulnerable, their situation must be taken seriously. In the effort to detect violence and protect people one may however risk acting in ways that are not beneficial. Bearing this in mind is particularly important when we deal with people who may have difficulties looking out for their own interests. Research shows that people with intellectual disabilities are subject to interventions and treatment that do not correspond with their interest and that originates from an insufficient understanding of their condition and their needs. A crucial point nevertheless is the diversity of people with intellectual disability. Recent studies show that many wish for others to have a better understanding of their situation. Many also want to have a voice and more influence on their everyday life.
We recommend research of a phenomenological character where qualitative methods are used to learn more about the experiences of people with intellectual disabilities when it comes to violence and sexual abuse. A growing number of researchers internationally employ interviews with people with intellectual disabilities as a source of knowledge. We consider it important to learn about how they view their situation, what is regarded as violence and abuse, how such experiences have been handled, whether or not relevant aid has been available, if the assistance has been satisfactory in the sense that their needs have been met and the interventions have been positive etc. Even general aspects of the life of people with intellectual disabilities can be of interest, not least because of what we have described as leading a «life apart» that may be a risk factor for violence.
In addition we recommend that a good and reliable study of prevalence be considered. Although costly and comprehensive, both when it comes to the preparations and during the collection of data, it is possible to accomplish.
Given the allegations that the legal system functions particularly badly in relation to people with intellectual disabilities, we also recommend studying the handling of reports of violence to the police and the following results.