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Friday, July 13, 2007

'I Count Myself as Normal, Well, not Normal, but Normal Enough' Men with Learning Disabilities Tell their Stories about Sexuality and Sexual Identity

Discussion of sexuality and its expression is commonplace. Looking in a newspaper or turning on the television provides evidence of this. It is also a topic of discussion among academics from various backgrounds. However, in relation to people with learning disabilities, such discussion is often framed in negative terms and is concerned with such things as abuse, HIV and STIs, 'unwanted' pregnancy and challenging sexual behaviour. There is little published research into the question of how men and women with learning disabilities experience their sexuality or sexual identity. This study sought to explore how a group of men with learning disabilities in South Wales experienced their sexuality and sexual identity, using an interpretative phenomenological analysis. It found that, although the participants saw themselves as sexual beings, their opportunities for expressing their sexuality were often limited and controlled by others. It also found that the participants saw themselves more in terms of their 'differences' from other men than of their similarities. Recommendations for changes in practice and policy that may facilitate the appropriate expression of sexuality by men with learning disabilities are made.

The study was undertaken between 2001 and 2003 in Wales and formed the basis for my PhD submission. During the 1990s there was a resurgence of academic interest in sexuality among disparate groups including cultural anthropologists, sociologists, social psychologists, historians and nurses. As a result, numerous books and articles were published, in relation to the subject both generally and more specifically in the field of learning disability.

However, in the field of learning disability such discussion tended to pathologise sexuality. For example, much of it was concerned with abuse, HIV and challenging sexual behaviours. Even when discussing issues such as parenting and homosexuality, both issues that may be regarded, by some, in a positive light, emphasis was often placed on possible negative implications (Edmonds & Collins, 1999). For example, in relation to parenting, despite evidence that people with learning disabilities do not have more children than the 'norm', do not necessarily have children with learning disabilities and can develop parenting skills (Tymchuk et al, 1987), parenting is frequently seen as something that should be avoided; if pregnancy does occur, it is likely to result in the child's being removed from the woman with a learning disability (Sheerin, 1998; Baum, 2000). Likewise in relation to homosexuality, discussion has been presented in a manner that reinforces the view that it is pathological (Cambridge, 1997; Cambridge & Mellan, 2000). For example, the focus of literature was not generally on supporting people in same-sex relationships, but on concern about the vulnerability of men with learning disabilities engaging in samesex relationships to such things as abuse and HIV.

Additionally, my own experience as a registered nurse for people with a learning disability was that most carers would rather ignore the issue of sexuality until such a time as a 'problem' arose. Such experience is also reported in the literature (Thomas & Woods, 2003).

Although normalisation had been taken up in the UK in the early 1970s (Chappell, 1992) and the United Nations had made a declaration on the Rights of Mentally Retarded Persons in 1971, it appeared to me that one 'right' that was not being strongly argued for was the right of people with a learning disability to express their sexuality and to experience personal and intimate relationships.

At the time the study commenced, government policy and legislation appeared confused. On the one hand, support for such a right could be found in the Human Rights Act 1998, in the 'standards of care' issued for adult placements under the Care Standards Act 2000 and in the White Paper Valuing People (DoH, 2001). On the other hand, documents relating to sexual health promotion, such as the Strategic Framework for Promoting Sexual Health in Wales (National Assembly for Wales, 2000), while recognising that the sexual and reproductive health needs of people with learning disabilities were not being met, made no suggestions as to how this situation might be improved. Moreover, the Sexual Offences Act 1956 (which remained in force until May 2005) was highly restrictive regarding the right of people with learning disabilities to engage in sexual behaviours. This situation was interesting and awoke a desire to explore it.

Additionally, personal experiences also played a part. They were not solely those related to working with men and women with learning disabilities. Self-awareness of the possible impact of being unable to express sexuality had upon such things as selfesteem and feelings of fulfilment also played a part.

The study, although small in scale, is significant because of the lack of literature on how men and women with learning disabilities experience their sexuality and sexual identity, both in the UK and in Western society more widely.