Sexual Rights and Intellectual Disability - Balancing Stakeholder's Views
Grace Kelly, University College Cork
Abstract
In Ireland, the area of relationships and sexuality for people with intellectual disabilities is a difficult and contested subject. Many concerns are still expressed about the vulnerability of people in this group in this area, and questions remain about their abilities to form romantic relationships, marry and, in particular, to assume a parental role. Meanwhile people with intellectual disabilities continue to express frustration about the lack of support, lack of privacy and lack of opportunities for development of relationships that they currently experience. These issues reflect what is happening in an international context, in that it has been noted that there is minimal discussion of friendship, sexuality, or loneliness within the community of intellectually disabled people in the wider disability studies field.
Research in this area has been largely controlled by professionals from medical, psychological and sexological backgrounds. As Tom Shakespeare has suggested, these studies have tended to neglect the voice and experience of disabled people themselves. In Ireland, very little formal research of any description has been undertaken. The recent exception is the work of McCormack et al (2005), although this study largely focuses on the area of sexual abuse. As a result, there is a significant lack of information about the experiences, attitudes and challenges which intellectually disabled people and key stakeholders are experiencing. Such Irish based knowledge is crucial in light of the (at least) historical influence of the Catholic Church on Irish attitudes to sexuality and Irish disability services.
This paper discusses the findings of my current PhD research. I explore the area of sexuality for people with intellectual disabilities as a rights issue. I use an ethnographic research design and focus group methodology to examine the extent to which the sexual needs and rights of people with intellectual disabilities are being recognised and facilitated in Ireland, and what the needs and concerns of the key support stakeholders are. I briefly discuss the experiences and aspirations of people with intellectual disabilities. Then I look at this issue from the viewpoint of three support groups -parents, staff and management. I compare and contrast the various needs of each stakeholder group and discuss key themes relating to rights, policy and support. Such an exploration is important because it allows us to identify what people with intellectual disabilities want in this area of their lives, what concerns parents have about their sons and daughters, what the difficulties are that staff face in dealing with this sensitive issue and what challenges management face in implementing policies and sex education programmes.