Falling through the Gap: Women with Mild Learning Disabilities and Self-harm

Women with learning disabilities are one of the most dis-empowered groups within our society recognized as suffering the double burden (Williams, 1992) of being both a woman and learning disabled, living in a patriarchal society that shuns ‘imperfection’. The very services provided to ‘protect’ women with learning disabilities have repeatedly provided a haven for their abusers (McCarthy and Thompson, 1997) and it is only in recent years that these women have been listened to (McCarthy, 1997) and the crimes against them have become publicly acknowledged. However, as we strive to improve service provision, modelling it on support and autonomy and we prepare to enter the third decade of ‘care in the community’, there is a group of women with learning disabilities who are falling through a gap in services.

Hattie is one of the women that fall through the gap; she has mild learning disabilities and self-harms. ¹ Hattie has been through numerous services, many times she was moved on because the service was unable to cope with her self-harm, which is considered to be chronic and treatment resistant despite intensive input from the community learning disability team. ²

It is not uncommon for someone with learning disabilities to self-harm; generally described as self-injurious behaviour, it comes under the heading of challenging behaviour, within the learning disability literature it is described as a common and concerning phenomenon (Murphy and Wilson, 1985). Self-injurious behaviour has been widely researched in individuals with learning disabilities and treatment models have been based on this research, primarily utilizing behavioural methods. The difficulty is two-fold; first, the research carried out focused almost exclusively on those with moderate to severe learning disabilities but the interventions are applied to those throughout the learning disability spectrum. Second, while the behavioural model and the underlying premises may hold at the more severe end of the learning disability spectrum, this may not be the case at the mild end. In other words Hattie may be more similar to other women that self-harm than she is to other people with learning disabilities that self-harm. This was the premise of my research.

The research grew out of my fury and distress at the lack of appropriate services offered to a woman with mild learning disabilities that I was working with. Molly self-harmed and, as with Hattie, the interventions offered were ineffectual. At the time I was new to the field of learning disabilities, my background was in gender and mental health and so I understood Molly's self-harming in the context of her distress at the sexual abuse she had suffered while in a long-stay hospital. This was not a view shared by the majority of staff who considered Molly's self-harm to be a result of her learning disability.

Research on self-harm within the non-learning disabled population and in particular from the user movement has clearly evidenced the links between sexual abuse and self-harm. Many women have described their self-harming as a way of coping with their emotional distress and are clear that it is a way of surviving rather than the possible misinterpretation of a suicidal connotation. Approaches considered effective to arise from this population focus on empowerment and the need for individuals to have control over their lives, including over their self-harm, with harm minimization as the ongoing aim. This is not what is offered within learning disability services where generally anything that may be used to self-harm is removed and the aim is to understand the ‘function’ of the behaviour with the goal of cessation of self-harm. In more severe cases restraint has often been employed. Particularly concerning is the frequency with which the act of self-harming is understood as a facet of being learning disabled and staff responses are defined in this way (Burke and Bedard, 1994). The opinions and experiences of the women I have spoken to offer a stark contrast to this view and clearly demonstrate the inappropriate responses to self-harm in this group of women.

I have spoken to eight women with mild to moderate learning disabilities about their lives and particularly about their self-harm. ³ Each of the women I have spoken to has disclosed abuse and most of the women have described multiple abuses including sexual abuse, but less than half of the women I spoke to had been offered specialist counselling to help them cope with what had happened to them. All of the women were either taking, or had in the past been prescribed, medication in order to reduce their self-harming, yet there is no medication which has been proven to reduce self-harm; all of the women taking medication mentioned their dislike of side-effects, in particular drowsiness. Most of the women had less control over their lives as a result of their self-harm and repeatedly women discussed their desire to be like other women and be able to do the same things when this was rarely an option for them.

Once a woman is labelled as learning disabled, she is defined by how she is funded and which services she is able to access. The issue of women with learning disabilities self-harming clearly demonstrates that while in theory practitioners acknowledge the arbitrary nature of the cut-off between learning disabled and non-learning disabled, funding does not allow for flexibility. Further services are uncomfortable with stretching beyond their remit. As such women with learning disabilities are denied access to services which specialize in anything other than learning disabilities despite the strong evidence that they may benefit from access to other specialist services.

Current service provision fails women with mild learning disabilities that self-harm. Specialist self-harm services often feel unable to respond to the needs of a woman with learning disabilities and funding is difficult to obtain, as it appears ring-fenced within the learning disability services, in turn offering inappropriate responses.