This qualitative study of violence and abuse against Norwegian women with physical disabilities is the first part of a 3-year research project carried out in collaboration with the Norwegian Network for Women with Disabilities and financed by the Norwegian Foundation for Health and Rehabilitation. It is also part of the author's doctoral work at the University of Technology and Natural Sciences (NTNU) in Trondheim, Norway.
The aim of the study is to construct a typology of abuse based on the experiences of women with physical disabilities who have been exposed to different types of violence and abuse. Based on the findings of this study, a map is drawn of the social contexts within which the abuse has taken place by focusing on the arenas of the abuse, the time perspectives, the consequences of the abuse and, finally, on the risk factors for abuse as the women themselves see it.
The international literature on abuse against persons with disabilities is limited and focuses mainly on abuse against children with disabilities and adults with intellectual disabilities (Sobsey 1994, Westcott 1993, Brown 1994, McCarthy 1998) and only to a minor degree on abuse against persons with physical disabilities specifically (Roher Institute 1995, MacFarlane 1994, Shakespeare 1996, Calderbank 2000). This is also the case with studies on abuse against women with disabilities and especially against women with physical disabilities. Two surveys, one carried out in Canada (Ridington 1989) and the other in the USA (Nosek et al. 1997) have studied the extent of abuse against women with physical disabilities. In the Canadian survey 40% of the women in the sample said they had been exposed to rape or physical abuse. In most cases the abuse had been committed by a person they knew and upon whom they were dependent. The US survey compared the physical, emotional and sexual abuse suffered by women with and without physical disabilities and found that 62% of the women in both groups had been exposed to one or more of these types of abuse. The findings also showed that the women with physical disabilities had experienced physical and sexual abuse over a longer period of time than the women without disabilities. In addition, the survey confirmed that women with physical disabilities were significantly more exposed to abuse from health and social care personal and attendants than women without disabilities.
In the Nordic countries, there are no similar surveys, but there are a few retrospective surveys on sexual abuse against hearing and visually impaired children (Kvam 2001, 2003). There are also some qualitative studies of abuse against women with physical disabilities (Sørheim 1998, Finndahl 2001, Viemerö 2004). The study by Sørheim consisted of interviews with 37 Norwegian women with different physical disabilities. Eight of the women had been exposed to sexual abuse that had been carried out by persons with whom they had a relationship of trust and dependence. The Swedish study by Finndahl included interviews with professionals as well as interviews with 12 women with physical disabilities. The findings showed that the abuse took place in various arenas; at home, in institutions and in the public arena. Most of the abuse was of an emotional character, but physical abuse also occurred, as did some instances of financial abuse. The abuse was performed either by a man in the family, a healthcare employee or another staff member upon whom the women were dependent. The study by Viemerö was based on interviews with 20 Finnish women with physical disabilities who had been exposed to physical, emotional, sexual and financial abuse. The majority of abusers were the women's partner, but also service providers and members of the women's childhood family. In addition to these qualitative studies, two literature studies have been carried out in Denmark, one with a focus on sexual abuse against people with disabilities (Muff 2001), the other with a focus on partner violence against women with disabilities (Bjerre & Jørgensen 2002). The first study gives an extensive review of the international literature, while the latter is a pre-study which includes both a review of the literature and recommendations with regard to preventing abuse and assisting women who have suffered abuse.
In this qualitative study, it was important to present the women's own subjective experiences of the abuse they had suffered, and, consequently, in-depth interviews were central (Kvale 1996). Initially, it was regarded as important to achieve a sample based on variations with regard to age, marital status, education, and work (Fog 1996). Letters of invitation were sent to members of the Norwegian Network for Women with Disabilities, and advertisements were published in newsletters of a number of user organizations, inviting women with physical disabilities who had been exposed to abuse to contact the author. Eighteen women with physical disabilities replied, who had been exposed to different types of abuse and wanted to discuss it. Due to limited resources only 13 could be interviewed.
The main characteristics of the 13 women were the following. They were between 33 and 61 years of age. Four were married, four were divorced, four were single and one was a widow. Eight had children, and most of the children were more than 15 years of age. Six of the women had 9 years of elementary education; six had college education, while one was studying at the college level. Furthermore, nine of them had earlier been employed but were now receiving disability benefits, three were working, and one was studying. Ten of the women were mobility impaired, one was hearing impaired, one was visually impaired, and one had a speech-impairment. Almost half of the informants had more than one disability and more than half of them were dependent on a wheelchair. Five of the thirteen women had a congenital disability. Overall, some important variations were achieved in the sample, but not as much as initially hoped for.
Due to the geographical spread of the informants and to limited resources the interviews were carried out by telephone. Most of the informants felt, however, that telephone interviews created a certain distance, which helped them to talk more openly about this sensitive issue, while a few said that they would have preferred a face-to-face interview. The interviews consisted of two telephone calls of about 1 hour each. The interviews were semi-structured, and covered at length all the types and degrees of abuse they had suffered and the social context within which the abuse had taken place. In addition, their life situation, both at the time of the abuse and at present, was discussed. The interviews were recorded and typed out in their entirety. Analysis of the data material was mostly done manually but was checked on certain issues by the use of the software program qualitative QSR Nvivo. All informants were sent a draft of the paper in order that they could check that their anonymity was sufficiently safeguarded.
Typology of Abuse
To be able to include all the types and degrees of abuse mentioned by the informants, a broad understanding of the concept of abuse was required, and this was difficult to find in the literature (Figure 1). Based on the interviews, and inspired by Galtung's (1974) conceptualization of violence, a typology was created based on the division of abuse into two main categories: personal (or direct) abuse, which is committed by individuals; and structural (or indirect) abuse, which, according to Galtung, is “built into the structure and expressed as unequal power” (1974:36). Galtung (1974) also distinguishes between intentional and unintentional abuse, which is an important aspect with regard to the motivation of the abuser and, especially, when we are looking at abuse committed by human service staff. He also makes the distinction between manifest and latent abuse, where the first one is abuse that has been carried out, while the second one is abuse that mainly exists as threats. The main focus in the research literature so far has been on personal abuse, as for example rape or bullying, while structural abuse in the form of institutional abuse by employees in hospitals, schools, and other institutions has been largely absent. Even if there is an element of structural abuse within personal abuse and vice versa, there is at the same time a logical distinction between abuse affecting people as a direct result of someone else's actions, and abuse affecting them indirectly through the power relations within institutions. Sobsey (1994), who refers primarily to institutions where people live, defines institutional abuse as “neglectful, psychological, physical or sexual abuse that takes place in the managed institutional care of human beings” (1994:90). Informed by this definition, institutional abuse may be understood as abuse committed by employees of institutions whose job it is to provide services and assistive devices to persons with disabilities living at home or in institutions.
In accordance with the existing research literature personal and structural abuse was further divided into the two dimensions of physical and emotional abuse. Most abuse is a combination of the two, but here they are treated separately for analytical reasons. Sexual abuse is an example of personal abuse that can be either physical in the form of unwanted sexual touch and rape, or emotional in the form of peeping and verbal intimidation or a combination of both. Another example of personal abuse is bullying at school, which also can be either physical or emotional or a combination of both. Institutional abuse is an example of structural abuse that is affecting the victims mainly through the power relations of institutions. The personal element of this abuse is brought about by the staff whose job it is to put the rules and regulations of the institutions into practice. Institutional abuse can be physical, for instance in connection with medical treatment that results in unnecessary pain and injuries, or emotional due to negative attitudes and degrading comments made by the staff of the institution, or sexual in the form of unwanted sexual touch, or neglectful by the lack of or delayed access to home services and assistive devices. Financial abuse discussed by Finndahl (2001) and Viemerö (2004) was, however, not a major theme in this study.
Types of Abuse
Several of the 13 women had experienced different types of physical abuse that had taken place both in their families in childhood and adulthood, at schools and in different health and social care institutions.
In the family setting the abusers could be the parents, the siblings or the women's marital partner. One of the women characterized her father as always being “so heavy-handed towards my sister and me”. Most of the informants had, however, been exposed to physical abuse by their marital partners. An example of this was a woman who said: “As my health got worse during the years we were married, he became more violent … I was hospitalized three times with clear signs of violence, but not a single doctor asked why”. Some informants had experienced physical bullying at school and one woman, who is dependent on a wheelchair, described the situation in this way: “In elementary school I was a victim of physical bullying … It was always fun to push me, since I was not able to get up again. Many times I lay on the ground until the teacher discovered that I was missing and came to pick me up”.
There were also examples of physical abuse that had occurred in health institutions in connection with treatment and healthcare. One woman told me about the lack of catheterization after an operation, which resulted in terrible pain and a serious bladder infection. She concluded: “It was physical torture. It was a night in the recovery room that I will never forget”. Several of the informants, who were dependent on care and nursing at home, told similar stories.
In the existing research literature, physical abuse by marital partners is relatively well documented (see Bjerre & Jørgensen 2002), while physical abuse by parents against children with disabilities is much less documented. The same is the case with physical bullying at school against children with disabilities. Physical abuse in connection with medical treatment and nursing in health institutions and home care is also rarely documented in the research literature (MacFarlane 1994, Sobsey 1994).
Several of the women had been victims of emotional abuse at home, at school and in health institutions. One of the women who had experienced emotional abuse by her father and older sister throughout much of her childhood, called it “emotional terror”. A few informants had felt betrayed by one or both of their parents, as the following quotation shows: “I felt they betrayed me from the very start, when they left me in the hospital at a very young age and after that they continued to hand me over to the butchers. By them doing that and accepting it, I felt betrayed. I did not understand until much later that they, too, were victims of the system”.
At school some of the women had experienced emotional bullying in the form of teasing and gossiping, often with reference to their disabilities. Social isolation was another form of emotional abuse, which one of the women had experienced as a result of an early integration in elementary school. She recalled the following: “In the so-called ordinary school, I was the only disabled child. There was no one else there with a disability, and I was completely isolated, because neither the teachers nor the parents wanted me there”. Some of the informants developed special strategies to avoid teasing due to their disabilities, such as one woman with a mobility impairment, who said: “I pretended to be dumb, so that I could avoid having to walk to the blackboard”.
Some of the women, who had been physically abused by their marital partners, also experienced emotional abuse. One woman told me: “In addition to the physical abuse that I experienced, my husband also abused me emotionally all these years, actually ever since we were engaged”. Another woman felt brainwashed by her marital partner and said: “In the end I was so brainwashed that I felt I had no value. In retrospect it is quite terrifying to realize this, since I have always looked at myself as a strong human being who could tackle things very well”.
Several informants had been exposed to emotional abuse by the staff of different health and social care institutions. One of them described the employees' attitudes to the residents in this way: “The most negative experience during my stay at this institution was caused by the staff who had a very degrading attitude toward the disabled residents … It was frightful”. Another woman explained the emotional insults by the staff in this way: “It has to do with the attitudes of the staff and their lack of respect towards the disabled … they do not manage to put their job in the right perspective, to take the other person's perspective and to show simple human respect towards those concerned.”
Similar examples of emotional abuse by the women's marital partners were found in the studies by Finndahl (2001) and Viemerö (2004). In the research literature there are, however, few descriptions of emotional abuse carried out by the staff of health and social care institutions and abuse by parents who fail to accept and support their disabled children (MacFarlane 1994, Sobsey 1994).
Sexual abuse can take the form of both physical abuse, such as unwanted sexual touch and rape, and emotional abuse, such as obscene comments and peeping. Eight of the 13 women had experienced different types of sexual abuse. One of the women experienced peeping, when she was hospitalized at the age of 15 years. She woke up one night, because she felt cold and discovered that the night watchman had taken off her bedclothes and sat looking at her. She felt paralysed and shocked. Another informant experienced being molested by a doctor in a hospital, when she was about the same age. While she was alone in her hospital room, one of the doctors came in and began to talk to her and fondle her thighs in what she experienced as “a very unpleasant way”. The situation was the more traumatic, since she was unable to move. When another patient entered the room, the doctor left, and she never saw him again. A third example of sexual abuse in the form of unwanted sexual touch involved one of the women who, at the age of 13 years lived at a residential school for the blind, and was molested by a young night watchman over a period of about 1 year.
These examples of different forms of sexual abuse have three characteristics in common. First, they all happened while the women were in their adolescence. Second, they were all in a very vulnerable situation at the time the abuse happened. And third, the abusers were all older men who worked in the institutions where the abuse took place.
Two of the informants had experienced sexual abuse in the form of rape in their early childhood, one from the age of 4 years and the other from the age of 5 years. The first one was later sexually abused as an adolescent, then again as an adult by her husband and later also by her father-in-law. A friend of the family abused the second woman until she left home at around the age of 16 years. She did also later experience sexual abuse by other men. Both said that they, as children, had no clear understanding of what was going on, but strongly felt that it was something “nasty”. In this study there were also some cases of rape committed by the women's marital partners and one case of sexual abuse by a friend of the woman. All of them experienced the sexual abuse as very traumatic, which resulted in serious health problems for them.
Sexual abuse against women with disabilities is relatively well documented in the research literature (see Muff 2001). Examples of sexual abuse, similar to the ones in this study can also be found in the studies by Sørheim (1998), Finndahl (2001) and Viemerö (2004). This literature indicates that sexual abuse, especially if experienced early in life, has serious consequences for the victims and often needs long-term professional treatment.
Institutional abuse is an example of structural abuse which “is built into the social structure, and become manifest as unequal power” (Galtung 1974:36). In my study there were several examples of institutional abuse, both at schools, in health and social care institutions, and at centres for the allocation of assistive devices. All these institutions are central to persons with disabilities, since they provide services and assistive devices, upon which they are dependent in their daily lives.
In this study institutional abuse in schools included both physical and emotional abuse in the form of bullying, neglect in the form of deficient education and also one example of sexual abuse in a residential school for the blind. One girl, who was hard of hearing, suffered neglect, since she did not get the necessary assistance to follow the instruction. She was also physically and emotionally bullied by the boys in her class all through elementary school. The consequences for her were substantial, especially in the form of emotional problems. Neglect in the form of a deficient education, physical and emotional bullying and sexual abuse that go unnoticed by the school authorities can all be characterized as institutional abuse.
In addition to the schools, there were also several examples of institutional abuse in hospitals, both emotional abuse in the form of disrespectful behaviour, physical abuse due to lack of proper treatment and care which included some examples of medical malpractice, and also two cases of sexual abuse in the form of peeping and unwanted sexual touch. Lack of access to home care and home nursing are also expressions of institutional abuse. One of the women who was dependent on a wheelchair, said: “I had to fight all the way to the county level to get the home help that I needed … They said they only had the capacity to give such services to the elderly. I showed them the law, which says that I too had a claim to such services. Then, finally, I got 1 hour of home care every fortnight”. Another woman who needed to upgrade her hours of home services, said: “My situation deteriorated the last year, and I have worked hard to get more assistance, but so far I have not succeeded. I have complained, but they are not calling me back … You get so tired to try to locate the right people who can take responsibility and co-ordinate things”.
Many of the informants experienced the procedures around the allocation of assistive devices as a very rigid and slow working system. In this connection, one of the women said: “The struggle to get the physical support devices that I need to be able to function in my daily life, is the most tiresome aspect of my disability … It steals a lot of energy from my everyday life, energy that I need to be able to do other things. Nothing annoys me more than this”. The long processing of applications for assistive devices did cause much frustration for many of the informants. One of them spent 3 years to get a new manual wheelchair. Another tried for several years to get a small dish washing machine for her kitchen and it was only when she threatened to inform the press, that she finally received one.
In this study there were surprisingly many examples of different types of institutional abuse (for a more extensive account see Olsvik 2004), while there are relatively few such descriptions in the research literature. There has been some focus on institutional abuse against the elderly (Stanley, Manthrope & Penhale 1999), but less on institutional abuse against people with disabilities (MacFarlane 1994, Sobsey 1994). As a consequence, there is a need for more research on this type of abuse.
Social Context of the Abuse
Based on the interviews in this study, the context of the abuse has been illustrated by the use of a chart (Figure 2). Box 1 shows the different types of abuse described earlier. In box 2 the different arenas of the abuse are listed, and in box 3 several dimensions of the time perspective are presented. All these factors have an impact on the consequences of the abuse, which are presented in box 4. In box 5 are some of the risk factors for the abuse given by the informants.
Arenas of Abuse
As indicated earlier in this study, the family was one of the main arenas of abuse. Some of the informants had been subjected to emotional and physical abuse by their parents and/or siblings, but the majority of abuse in the family was caused by a marital partner and consisted of physical, emotional or sexual abuse or a combination of those. The school was another major arena of abuse, especially for bullying, both physical in the form of shoving and hitting, and emotional in the form of teasing and gossiping. There was also one example of sexual abuse and some cases of neglect where the special educational needs of the women were not met. Abuse also happened within healthcare institutions; in hospitals and in home care and home nursing. The character of this abuse was both emotional in the form of disrespectful behaviour and physical in the form of unnecessary tough treatment or lack of proper care. There were also some cases of medical malpractice, together with two examples of sexual abuse. According to the informants the centres for the allocation of assistive devices were also arenas of harassment and abuse. A common complaint was the rigidity and the slow processing of the allocation and repairing of assistive devices, which one of the women's experienced as “the most troublesome consequence of my disability”.
As we have seen, the abuse of women with physical disabilities may take place in many different arenas of society. Several informants had experienced abuse both at home, at school and in their encounters with the different healthcare institutions. For these women, the consequences were more serious and often required professional help.
Time Perspectives of Abuse
The time perspective was an important aspect of the abuse, especially with regard to the seriousness of the consequences of the abuse. It made a difference whether the abuse happened during the woman's childhood or adulthood, and whether it was a single incident or was repeated over a longer period of time.
In this study there were several examples of abuse that took place during childhood. Two of the women had been sexually abused at an early age, while others had experienced physical and emotional abuse in childhood by their parents and siblings. For some the abuse had continued at school in the form of bullying by their fellow students or in the form of neglect by the school authorities that had not taken their disabilities into consideration. In addition, some had experienced physical and emotional abuse during their stays in hospitals both as children and adults either by unnecessary painful treatments or by deficient nursing and care.
It is also decisive for the consequences of the abuse whether the abuse was a single incident or was repeated over an extended period of time. Four of the women had experienced the abuse as a single incident; three of the cases were of a sexual character, while the fourth was a physical kidnapping of a woman in her wheelchair. The remaining nine women had been exposed to abuse that had lasted for longer periods of time.
The interviews indicate that the earlier the abuse happens, the more serious are the consequences of the abuse. The same seems to be true with regard to the duration of the abuse. Considering the serious consequences of early and long-term abuse it is surprising that the time perspective has not been given more attention in the research literature.
Consequences of Abuse
The consequences of the abuse for the women were primarily physical and emotional. Bruises and torn clothes were often the physical consequences of bullying at school, while fractures and cuts were the results of violence by marital partners. Injuries to the neck as a result of strangling attempts or to the pelvis as a result of rape were also reported. The most extreme physical consequences were suicide attempts and self-harm.
One of the more serious consequences of having been physically abused was a damaged relationship to their own bodies. One of the women, who had experienced several invasive treatments in the hospital, said that she learned very early that “everybody can do whatever they want with my body”. Another woman with similar experiences, said: “I do not possess my own body. In fact, I donated my body to the healthcare institutions a long time ago”. A third woman had for a long time been distrustful of men as a result of violence by her marital partner, and a fourth who had been sexually molested in her youth, still had problems with engaging in sexual contact with men. A tragic consequence for children, who were molested at an early age, seems to be that they have difficulties in saying “no” to new sexual abusers, and, as a consequence, the abuse may continue. This happened to two of the women in this study.
The emotional consequences of the abuse were also several and serious. One of the women, who for many years was exposed to violence by her husband, felt she became “brain washed”. Another who had experienced the same kind of abuse, said: “In the end there was nothing left of me”. A third one described the emotional abuse as “psychic terror”. Other emotional consequences were sleeping disorders, and one of the women still had nightmares as a result of a long lasting bullying at school. Panic attacks and depression were also mentioned, and problems with alcohol and drugs were also quite common.
Both abuse of a long duration and single incidents of abuse had left their imprints on the women. A brief incident of abuse was experienced as “an eternity”. One woman said: “The abuse was in itself short, but it left me devastated for a long time afterwards”. The fury they felt was as strong as their feeling of shock and helplessness. The two women, who in their adolescence had experienced sexual abuse during their stays in hospital, still remembered vividly their feelings of helplessness, and the memory still upset them. One woman, who was drugged and then sexually abused by a friend, experienced this as “a huge shock” and for her this single incident of sexual abuse resulted in a long period of an eating disorder.
This study indicates that the abuse suffered by the women has had both physical consequences, in the form of bruises and injuries, and emotional consequences, in the form of sleeping disorders, panic attacks and depression. The more serious consequences have resulted in suicide attempts, self-harm and drug abuse. In other qualitative studies we find descriptions of similar consequences (Finndahl 2001, Sørheim 1998, Viemerö 2004).
How did the women themselves explain the risk factors behind the abuse they had suffered? The informants related the bullying they had suffered at school either to the way they walked or to their wheelchair, or to the fact that they did not hear or see as well as the other students. They, therefore, felt that this kind of abuse was due mainly to their disability, and less to their gender and age, but there was also a certain power aspect involved, in the sense that the abuser was either stronger or older or in a superior position to them.
According to the informants, disability was not the main risk factor, when it came to sexual abuse of small children. They felt that this type of abuse was due mainly to their young age and to the abuser's sexual disposition and need for control and, therefore, not so much related to their gender or disability. One of the women, who had been exposed to sexual abuse as a child, was very clear on this point: “It was not due to my disability, but more to the fact that I was a child. Sexual abuse of children has less to do with gender than with power. When I got older, gender became more relevant, but when I was a child, I think it mainly had to do with that person's need for power and control”.
The women who had experienced sexual abuse as adults added that, as adults, gender and disability also played a part. When asked about the explanation for the sexual abuse she had suffered from her partner, one woman answered: “Power I believe, if he did not get what he wanted, the result was violence and that included rape”. Another woman saw her disability as the main risk factor for the sexual abuse she had suffered and said: “My disability was the reason that he got the upper hand. I could never offer him much resistance, and he knew that”. Some of the abusers were, according to the informants, alcoholics and sociopaths, and some women saw this as an explanation as to why they had been abused by their partners.
The informants who had experienced abuse in a hospital setting related this to the unequal power relationship between patients and hospital staff. Due to their disabilities they often needed medical care and, therefore, found themselves in vulnerable settings. This has also been pointed out by several other researchers (Calderbank 2000, Shakespeare 1996, Sobsey 1994). The women who had suffered medical malpractice saw this as an example of the same unequal power relations, especially since the malpractice was often denied by the hospital authorities.
One of the main contributions of this study is the attempt to create a comprehensive typology of abuse based on the women's own experiences. Few studies have tried to establish a typology of abuse, such as the one used here (Figure 1). The classification of abuse into personal/direct and structural/indirect abuse has not been made explicit, even though some studies refer to institutional abuse as a type of abuse to which people with disabilities are particularly exposed (MacFarlane 1994, Sobsey 1994). In this study there were many examples of institutional abuse relating to the practices and routines of different institutions (see Olsvik 2004). According to the informants this was one type of abuse that was especially difficult to deal with and therefore important to include in the typology. This study is a small step in the direction of a typology of abuse that needs to be developed further, especially with regard to the different aspects of institutional abuse.
The second contribution of this study is the attempt to draw a map of the social contexts of abuse including the arenas of the abuse, the consequences of the abuse and the time perspective together with the risk factors behind the abuse (Figure 2). The time perspective has so far received little attention in the research literature, while this study indicates that it is an important aspect, especially with regard to the consequences of abuse. Abuse that has taken place early in life, or that has lasted over a long period of time, seems to have the most serious consequences. Again, earlier studies have included some of the aspects of this context (Finndahl 2001, Sørheim 1998, Viemerö 2004), but we are still far from having drawn the complete map.
The third contribution is the attempt to understand why abuse happens and to take into consideration the reflections of the women themselves. Some attempts have been made to explain why abuse takes place, but only a few have included the informants' own understandings of the reasons behind the abuse. Sørheim (1998) underlines the importance of studying the circumstances of the abuse in order to understand why it happens. According to her, abuse is a demonstration of power and an expression of the hierarchical power structure in our society between men and women, children and adults, persons with and without disabilities, as well as between professionals and lay people. Sørheim's views are supported by this study.
This paper also illustrates that the risk factors for abuse against women with physical disabilities may differ from situation to situation. In some situations the main risk factors may be related to the women's disabilities, in others it may be related to their gender or their age. The underlying reason is, however, related to the hierarchical power structures of our society and our institutions. This illustrates the concept of intersectionality, where sociocultural hierarchies constructed around social categories such as gender, disability and age meet and interact in a dynamic and complex way. More research is needed, however, before we can say that we have a clear understanding of the typology and the social contexts of the abuse as well as the risk factors behind it.