Disability and domestic violence discourses

Evidence of shifting concepts of disability is apparent in changing discursive practices. Disability has historically been missing from discourses that are not health-specific (Fawcett, Reference Fawcett2000). Where mainstream health discourses have been disability-specific, they have tended to focus largely on the impairment and treatment of disabled individuals, locating the problem within the body of the disabled person and seeing the causes of disability as ‘physical, behavioural, psychological, cognitive and sensory tragedy’ (Depoy et al., Reference Depoy, Gilson, Cramer, Hans and Pat2003: 177). Medicalised discourses like these emphasise the potential for diagnosis, treatment, adaptation and medical interventions intended to bring about recovery or, at the least, to mitigate the effects of the impairment. This leads to a focus on body, the impairment itself and the limitations it causes rather than the person and their capabilities (Crow, Reference Crow, Barnes and Mercer1996; Stone and Priestly, Reference Stone and Priestley1996; Corker, Reference Corker and Shakespeare1998). These dominant medicalised discourses have historically held strong footholds in a variety of institutional sites, including health care, educational and social service arenas. Nonetheless, they have been the subject of a sustained challenge by the disabled people's movement that has brought about significant changes in the way disability is conceptualised and treated.

The disabled people's movement in both the UK and US has been a key site of activism for addressing the exclusion of disabled people from public and social life for more than three decades. The movement began in the UK with the formation of the Union of the Physically Impaired Against Segregation in 1972 and continues to be an active force in shaping personal, academic and professional thinking around disability (Shakespeare, Reference Shakespeare2006). In the past, disability policy has legitimated the segregation of disabled people from the non-disabled population (Morris, Reference Morris1991; Drake, Reference Drake1999), which can be seen in the institutionalisation of disabled people in both the UK and the US (Finkelstein, Reference Finkelstein1980; Murray, Reference Murray2003). The movement's opposition to segregation is reflected in the way in which disabled people have rejected medicalised categorisations of disability as divisive (Corker, Reference Corker and Shakespeare1998) and instead emphasised the common forms of oppression and marginalisation that all disabled people can experience solely as a result of their disability (Rioux et al., Reference Rioux, Crawford, Ticoll, Bach, Barnes and Mercer1997).

The movement has worked to change disability discourses and thus transform the lived experiences of disabled people by resisting those discourses that construct the disabled identity as one of tragedy, loss and dependence, putting forward a model that focuses on the shared experiences of disabled people in society (Corker, Reference Corker and Shakespeare1998). Social model discourses of disability are based on the concept that ‘social, environmental and attitudinal barriers’ dis-able people with impairments from being full participants in society (Crow, Reference Crow, Barnes and Mercer1996: 208). Rejecting the idea that disability is a construct of physical, psychological or intellectual deficiency, the social model instead focuses on ways in which the mainstream environment, both physical and social, can be adapted to accommodate the needs of people with impairments. While the social model has recently been challenged for being reductionist (Shakespeare, Reference Shakespeare2006), it has had an undeniable impact on the way in which some disability-related services are delivered, despite not being implemented uniformly or across all care sectors (Priestly, Reference Priestly1999).

Similar to the way in which disability activism can trace its ideological foundations to the rejection of institutionalisation and the development of the social model of disability, much domestic violence activism, service provision and research is broadly feminist in nature with roots in the women's liberation movement and the recognition of gender as a defining social structure. The movement, which emerged in the late 1960s in both the US and UK, has been largely underpinned by feminist theorising around gendered power dynamics within relationships and families (Mullender, Reference Mullender1996). These explanations provide both a measure of ideological coherence for organisations supporting survivors and the basis for an integrative feminist model of domestic violence (McPhail et al., Reference McPhail, Busch, Kulkarni and Rice2007).

Individuals and organisations working to end domestic violence in the UK and US, however, have never come to widespread agreement on either the terminology around or definition of the problem. The contested nature of these debates is reflected in the range of terms and definitions currently being used across the movement in the two sites. These differences reflect not only linguistic variations, but also differences in the way the issues are theorised and framed.

Early feminist discourses in both the UK and US used terms such as ‘wife-beating’ or ‘battering’ to describe both the physical abuse that many women live with and to indicate the gendered dynamic of this abuse. These politicised terms were successfully incorporated into the wider public vocabulary, where they remain in use in the US to describe a range of abusive behaviours, including emotional and psychological abuse. The National Coalition Against Domestic Violence (NCADV) in the US defines battering as ‘a pattern of behavior [sic] used to establish power and control over another person with whom an intimate relationship is or has been shared through fear and intimidation, often including the threat or use of violence’ (NCADV, 2005).

In the UK, the term ‘battered woman’ was also used to describe women who experienced abuse early on in the politicisation of domestic violence as a political issue, but has largely passed out of use because it does not adequately reflect the myriad ways that abuse can be inflicted. The Home Office uses the term domestic violence instead and defines it as ‘any incident of threatening behaviour, violence or abuse between adults who are or have been in a relationship together, or between family members, regardless of gender or sexuality’ (Home Office, 2005: 7).

Both the British and American definitions of domestic violence understand the dynamic as an imbalance of power and control between individuals in an intimate or formerly intimate relationship. While the Home Office definition is broad enough to include abusive dynamics within families, the NCADV definition is more restrictive, although the organisation does note that ‘familial, elder and child abuse may be present in a violent home’ (NCADV 2005). These parameters around intimacy and family membership are a key focus of this paper and the findings and discussion section will investigate how these definitions might be usefully extended to ensure that disabled survivors of abuse are included.

Researching politicisation and social movement activism

A qualitative approach guided the collection of data and is theoretically consistent with an analysis that focuses on the ways in which professionals and activists conceptualise and articulate the intersection of disability and domestic abuse. The collection of data relied on semi-structured interviews and focus groups with 29 participants in the UK and NC who were engaged in campaigning for greater awareness of the needs of disabled survivors of abuse, creating or providing services for this group of survivors, or involved in efforts to resource and implement these services. The participants thus were approached on the basis of professional experience or political activism around the intersection of abuse and disability. They were a diverse group of disabled and non-disabled women and included directors of national and state-level domestic violence organisations, disabled activists, training specialists and refuge workers who provide direct services to survivors of violence. Several participants, both disabled and non-disabled, linked their own experiences of domestic violence abuse to their work on this issue. Holding a range of positions within the voluntary and statutory sectors, they all had significant expertise of the dynamics of abuse and disability. These, then, can be seen as elite interviews (Skinner, Reference Skinner, Skinner, Hester and Malos2004).

At the completion of the fieldwork period, I had carried out a total of 21 interviews and three group discussions. In England, I interviewed a total of 14 participants and these were evenly split between work in the domestic violence sphere and work in the disability sphere. This is an oversimplification, however, as some individuals were in positions where the two spheres overlapped, such as one participant who worked as a support worker for disabled women within a domestic violence organisation. With these 14 participants, I carried out 11 individual interviews and one group discussion with three disabled activists from a London-based organisation of women with learning disabilities. In North Carolina, I carried out interviews and group discussions with 15 individuals. Of these, six worked primarily in the domestic violence field, five were affiliated to disability organisations and four were policy-makers with the state.

The potential for individuals to have a significant impact on the politicisation of a social issue was a resonant theme throughout the interviews. Because the numbers of activists working on this issue are small in both North Carolina and England, I used snowballing techniques to locate and approach participants. Many of the participants knew one another and had worked together in efforts to bring this issue to the forefront of the political agenda. In several interviews, participants named particular individuals who have campaigned tirelessly around this issue, to illustrate the effect that one committed person can have. This happened during interviews in both North Carolina and England and with participants from both the disability and domestic violence spheres. In all cases, the individuals identified as being exceptionally effective catalysts for the issue were disabled activists, many of whom had personal experience of abuse.

I was aware that, as key figures in the process of politicisation that I was exploring, participants would also be able to influence the research in a number of ways, including delaying its progress, taking control of the interview and the topics addressed and influencing the findings. There were, of course, inevitable delays in scheduling interviews and one participant delayed taking part until after she had collated current data on the work that her organisation was doing to address this form of need. This highlighted the political nature of the research and the potential for this project to compel some participants to take a stance on the issue. Most participants, however, did not exercise undue influence over the research process and in retrospect it seems that my concerns were, like Skinner's (Reference Skinner, Skinner, Hester and Malos2004), largely unfounded.

Findings and discussion

The research established that there are some difficulties between the domestic violence sector and the disability sector in agreeing on a definition of domestic violence. The two sectors are finding common ground around feminist understandings of domestic violence as occurring when one partner in an intimate relationship exercises an undue amount of power, but the nature of that intimacy is still currently being debated, as is the intimate nature of a caring relationship. There is also no real agreement on the gender dynamics involved in the abuse of people with disabilities. This section discusses these issues, intimacy, caring and gender, before moving on to consider specific ways in which the definition of domestic violence could be usefully expanded.

One encouraging finding from this research was around the growing awareness of the needs of disabled women experiencing abuse across both sectors, due in large part to the work being done by disability activists. Participants working within the domestic violence arena demonstrated a growing understanding of the needs of disabled women and used feminist understandings to frame the issue.

As the latter quote demonstrates, the recognition of familiar dynamics around power does not always signify that the participant sees the issue as having broken out of the parameters that common notions of intimacy suggest. This contested notion of intimacy has been clearly articulated by the disabled people's movement, both in the findings of this research and in policy documents from the Greater London Action on Disability (GLAD).

Participants from the disability sphere, unlike those from the domestic violence sphere, clearly defined the nature of the relationship between the primary caregiver and the disabled person as an intimate one. Although some caregivers are spouses or sexual partners, perhaps more often they are not members of the family but paid staff, who are primarily women. In these cases, disabled women (and men) do share intimacy with the people who help them dress, bathe, toilet and complete other very personal tasks. Nonetheless, this is not what is normally meant when referring to an intimate relationship and particularly not in the domestic violence sphere, where intimacy implies a romantic and/or sexual relationship.

Participants working within the disability sphere consistently raised the point that disabled women's experience of domestic violence and abuse is likely to be significantly different from that of non-disabled women and were much more likely to discuss how disabled people are vulnerable to abuse from a more extensive range of people, primarily because they are likely to receive care from a number of people.

The danger with defining domestic violence as occurring between sexually intimate (or formerly intimate) partners has also been unambiguously stated in the Greater London Action on Disability's (GLAD) response to the government's proposal on domestic violence, which takes issue with the way intimacy has traditionally been defined. This response suggests that the way domestic violence is currently defined, disabled women are likely to be excluded and their protection and safety is put at risk (GLAD, 2003). This document goes on to highlight the ‘violence and abuse experienced by disabled people who have carers or personal assistants who work with them providing personal care, which can be from helping feed someone to intimate care e.g. toileting’ (GLAD, 2003: 9).

In raising this aspect of abuse, participants working within the disability sphere were pushing at the boundary of how intimacy is defined in relation to domestic violence. In doing so, they are both resisting conventional definitions of domestic violence and putting forward an alternative interpretation of need that could potentially broaden current thinking around domestic violence service provision both in North Carolina and in England. This could open up access to groups of disabled people who are currently not able to contact domestic violence services, such as individuals living in residential care homes. Refuge-based services may not be appropriate for individuals who require intensive care and it seems likely that some form of outreach services for this group of survivors will need to be developed.

The recognition of disabled men's vulnerability to abuse is another issue that could result in an expanded concept of domestic violence. While the gendered nature of domestic abuse is well documented (Tjaden and Thoennes, Reference Tjaden and Thoennes2000; Walby and Myhill, Reference Walby and Myhill2004; US Department of Justice, 2005; Home Office, 2007), there is a substantial gap in what we know about gender, disability and violence. All participants from the disability sphere were concerned about women's issues and saw themselves as working to improve the lives of women with disabilities, yet they also were very explicit in their recognition that disabled men are also at risk of abuse. Less clear is who is likely to perpetrate this abuse and how gender affects these dynamics. Additionally, they suggested that disabled men might have experiences of domestic violence and abuse that differ significantly from those of both non-disabled men and women.

There has been no large-scale research into experiences of abuse within group homes, but this debate can be informed by what we know about the dynamics of elder abuse, as older people and disabled people share many of the same vulnerabilities to abuse and may also share similar experiences of care. While evidence shows that older women are more at risk of experiencing physical abuse than older men (Penhale, Reference Penhale2003), there is also increasing evidence that older men are vulnerable to abuse (Krug et al., Reference Krug, Dahlberg, Mercy, Zwi and Lozano2002) and that female caregivers can be the perpetrators of this abuse (Whittaker, Reference Whittaker, O'Toole, Schiffman, Kiter Edwards and Edwards2007). This is an area that is under-researched and further research is needed on both the gendered dynamics of elder abuse, particularly in residential care homes and other institutional settings, as well as the particular vulnerabilities of older men (Kosberg and Mangum, Reference Kosberg and Mangum2002).

Some participants in research, particularly those working in the domestic violence sector in NC, made explicit links to elder abuse. These participants suggested that caregiver abuse could fit within a broader framework of family violence, which includes not only intimate partner abuse, but also elder and child abuse. Thus, they suggested that the needs of disabled survivors could be taken up by refuge-based organisations or other service providers who see their remit as tackling issues of family violence and providing services to these groups of survivors.

These participants suggested that, while the typical gender dynamic of domestic violence is more complex in cases of elder abuse, the services developed for survivors of this form of interpersonal violence could be extended to disabled people experiencing caregiver violence. This would entail extending outreach work in residential homes or other institutions and, crucially, recognising that men and women who experience abuse may have different sets of needs.

Activists from the domestic violence sphere in both sites also expressed concerns about other potential effects of expanding the definition of domestic violence and relation service provision. These concerns centred on fears that the movement could lose sight of its mission to provide services to survivors of gender-based violence if it were to expand to cover the abuse of vulnerable adults.

These participants felt that using a gender-neutral definition, therefore, could have the effect both of making the issue more ambiguous in the public sphere and of obscuring those women and children who have survived domestic violence. As an example of a fully politicised need, domestic violence has attained a level of widespread attention and state intervention, in large part due to tireless awareness-raising campaigns in both the UK and US. Some participants in the domestic violence sector felt that expanding the definition would undo this work and result in the issue becoming less politicised and less definable in the public sphere. This reluctance to expand current definitions and service provision was picked up on by some participants in the disability sphere.

The current Home Office definition of domestic violence has been taken up by the two largest networks of refuges and domestic violence service providers in the UK, Refuge and Women's Aid Federation of England (WAFE). This definition, as discussed above, focuses on violence that occurs between intimate partners or family members and does not make space for oppression that occurs as a result of disability. The NCADV definition, while not specifically addressing caregiver abuse, does make clear links between violence against women and children and other forms of violence against marginalised groups in society. Although the organisation maintains that domestic violence ‘results from the use of force or threat to achieve and maintain control over others in intimate relationships’ (emphasis mine), it also recognises that domestic violence is ‘intrinsically linked’ to the ‘unique experiences of oppression stemming from their specific historic, cultural and social experiences and realities’ that people with disabilities (and other marginalised groups) can share (NCADV, 2005).

This expanded definition addresses some of the issues that this research raises and makes clear that domestic violence can take a range of forms that are specific to the experiences of a particular oppressed group. It may offer one possible way of acknowledging the experiences of disabled survivors of caregiver abuse, while holding firmly to what we know about the power dynamics of domestic violence. As such, this definition represents a possible way forward in understanding caregiver abuse in relation to violence that is typically perpetuated against women, children and other vulnerable groups, including disabled men. It maintains the focus on domestic violence while making room for related experiences of oppression and abuse.

Another potential way forward in capturing the complexity of the dynamics involved in the abuse of disabled people has been put forward by Rioux et al. (Reference Rioux, Crawford, Ticoll, Bach, Barnes and Mercer1997), who have suggested a working definition that highlights the range of abuses that disabled people can experience:

This definition does several things: it put people with disabilities at the centre of the issue, highlights the power imbalance that gives rise to domestic abuse, defines the range of abuses that constitute interpersonal violence and specifically relates these dynamics to the experiences of disabled people. As a general definition of interpersonal violence, it does not specify the type of relationship that exists between the victim and the perpetrator. It thus makes room to address the complex dynamic of care as well as the potential for abuse to take forms outside of the dominant gendered dynamic in which men perpetrate violence against women.