A short while ago, we posted about the development of a tool to help understand the sexual knowledge of people with learning disabilities which was piloted in a secure services setting. There is a growing literature which focuses on issues of abuse, contraception or sex education, but there is little which has looked at how people with learning disabilities develop a sexual identity or conceptualise their sexuality. The researchers in this study therefore set out to understand this in relation to women with learning disabilities.

What they did was to construct a semi structured questionnaire which they administered to 10 women with learning, identified as White British with ages ranging from 19 to 64 years. All the women used words to communicate and were able to give their verbal consent to participate. The researchers carried out the interviews in a flexible manner, following the lead of the women in relation to the order in which topics were covered. They were completed over one or two sessions and lasted in total between 45 minutes and 2 hours. In addition to transcribing and anonymising the interviews the researchers also recorded emotions and nonverbal behaviours as well as the researcher’s own feelings.

They then analysed the transcripts to develop themes and finally three broad categories.

1.    ‘Sex and sexuality’

Many of the women interviewed appeared to have no concept of themselves as sexual beings and some thought that sex was dirty or disgusting, while others associated it with sickness and disease. Only two of the women said they had someone they could talk to about sex, one speaking to a friend, the other a care worker.

For most of the women, they had little or knowledge of laws about sex or sexually transmitted infections, other than HIV.

Many of the women did not know the meaning of terms used to describe sexual orientation, such as homosexual, gay or lesbian. Although some of the women had negative views about homosexuality, seeing it as wrong.

The women in the study tended to view men as the ones in control of sex, in terms of sexual activity and how women expressed their own sexuality.

The women in rarely appeared to expect to experience sexual desire, but ‘acceded to pleasureless sexual acts with men in the apparent belief that this was their role.’ Only one woman said that sex with her boyfriend was by mutual agreement, all but one of the women other women said that that sex was not something pleasurable.

In recounting the views expressed in the women’s accounts, the authors raised the question as to whether the women in the study could in fact give meaningful consent to sexual activity.

Seven of the women linked female sexuality with the experience of pain, for example in relation to biological
aspects of being female  – pregnancies, childbirth and pain associated with menstruation.

The authors summarise this theme a suggesting that “most of the women considered sex to be at best a pleasureless secret activity undertaken with men in response to biological imperatives and at worst, painful, dirty and diseased.”

2.    ‘Regulated beings’

Many of the women in the study said that they were not ‘allowed’ to have sex with their boyfriends and feared getting ‘caught’, some by staff, some by parents

One woman talked about staff at the home where she lived ‘allowing’ her and her boyfriend to ‘be a couple’ and to ‘kiss and cuddle’ but she did not think they would ‘allow’ her to have sex with him.

The women also talked about being ‘advised’ against having children, by parents, or by professionals
The authors describe the situation whereby women with intellectual disabilities are seen to live in ‘suspended adolescence’ and many of the women did not identify themselves as women, but as girls.

The authors describe them as ‘trapped between the feeling that they should acquiesce to the sexual advances of their male partners’ and others in their lives who ‘believed that it was inappropriate for them to engage in sexual activity at all. Their own wishes appeared to be entirely engulfed by these opposing influences.”

3.    ‘Women with intellectual disabilities’

Few of the women had anything positive to say about themselves in response to questions about what was important about them, or a follow up probe question about what they valued about themselves which left them vulnerable to adopting and acquiescing to the conflicting views and wishes of others.

They also held gender stereotypical ideas about men and women and the authors suggest that the implicit messages given by the women were that men were somehow ‘better and more valuable than women.’

The authors point out that the findings present largely negative experiences of the women interviewed of sex and sexuality, they are also keen to point out that they have throughout their paper, documented every example of a positive experience or opinion. They point out that “Satisfaction with the sexual aspects of their lives was certainly not a common experience for the women in this study.”

The authors conclude that the women in the study struggled to develop positive sexual identities and had many negative views about sex

They point out though that staff who support people may experience conflict in their role as they struggle to balance the rights of people and the potential vulnerabilities to abuse and risk of exploitation.

The authors also found wide variation between the 10 women in the study with regard to the extent to which they had a coherent sense of sexual identity.  They suggest the need for more research to support the idea of a model of factors which sexual identity development, paying attention to what women with intellectual disabilities want in terms of support on sexuality issues.

Finally, the authors consider how little has changed since earlier research (e.g. McCarthy 1999) and the complexity of the task in tackling these issues.

‘I don’t know what a proper woman means’: what women with intellectual disabilities think about sex, sexuality and themselves, Fitzgerald, C. & Withers, P. in British Journal of Learning Disabilities, 41: 5–12.
reference: McCarthy M. (1999) Sexuality and women with learning disabilities, London, Jessica Kingsley Publishers Ltd  .