Sexuality and Relationships in the Lives of People with Intellectual Disabilities is a book filled with little gems and bombs going off on the page.
‘I first met him on a winter’s day when I slipped on the ice and fell into his arms. I have been there ever since’, says Ebba of her husband, Jonni (70--71).
‘I was sterilised when I was 14. … I have never wanted a child, but I was angry because I didn’t get the opportunity to decide for myself. I thought it was so humiliating to be sent to surgery, lied to and told your appendix was removed’ (68).
You have to pause over the text to take in some of the monumental joys and pains described by men and women with intellectual disabilities in this book. Divided into two parts, Part 1 has an international focus and Part 2 a UK focus. Throughout, the editors and contributors pay attention to whose voice is on the page, how the writing has come about and how decisions about terminology (sometimes culturally specific) have been made. One of the reasons for this is to foreground ‘insider accounts’ and life stories from people with intellectual disabilities as counter to a history of sex and sexuality being done to people with intellectual disabilities. In the book people claim their own stories: ‘… our stories are told with our own words and I think this is very important. This is our story’ (66).
And what stories. Across cultures and across time, we see the legacy of the control and regulation of sexuality and relationships of people with intellectual disabilities. There are helpful, if shameful, reminders of the past and the binary depiction of people with intellectual disabilities as having either dangerous and unbridled sexual appetites or being childlike, asexual and in need of ‘protection’. The book brings critique to the suggestion that very much has changed citing gaps between the rhetoric of policy, law and ‘rights’ and continued lived experience: a woman meets a man at a music group, they like each other, she asks staff for help to meet up with him. ‘… it would be complicated’, she is told (31).
Part 1 presents insights from Flanders, Japan, Malta and Australia, to name just a few. There are some interesting differences: in Japan there is very little pressure to leave home and seek independence outside of marriage; in Malta, a mother with intellectual disabilities causes outcry for not conforming to her perceived role as ‘angelic’ and ‘asexual’. We also detect the similarities: about the value of relationships, obstacles – ‘… being together only one day a week isn’t a relationship’, says Peggy and Maurice who met online in Flanders – and the importance of having a voice and working with peers and self-advocates (95).
Part 2 provides an array of important messages which highlight the importance of diversity and intersectionality when we are thinking about disability, sexuality and identity. There are chapters about being transgender in a rural setting, on being lesbian and setting up a support group, on peer support for LGBT people with intellectual disabilities and difficulties with the non-disabled LGBT community, on being Black and experiencing layers of discrimination, and on people with intellectual disabilities who buy and or sell/are sold for sex. These diverse topics really are a strength of this book, which has made a very considered attempt to avoid the trap of assuming homogeneity of experience and identity. The book threads five research questions across the whole text and returns to them in a concluding chapter. This is perhaps an attempt to pull the very many different threads together and it works but I did not need it especially, because the power is in the stories from the past and the present. Looking back in time, Daniel Docherty recalls his time in an institution and says: ‘When I was living in the hospital they didn’t call it sex; they called it “Percy Filth”’. Fast forward to the current day and we hear from self-advocates in Ireland whose sexual relationships are criminalised (20).
If I am honest, the overall lack of ‘filth’ (I mean that in a good way) in the book made me curious. It is a slightly sex-less read in a book about sexuality. No-one is obliged to spell out their inner-most desires in research and books of this kind, but the relative absence of people with intellectual disabilities talking about the sheer unadulterated, physical pleasure of having sex might reinforce an unhelpful idea that people want ‘nice’, ‘safe’ relationships. How do people with intellectual disabilities who want to attend sex clubs, explore fetish, try SM, have sex on a beach on a hot evening and so on get to try all these things?
Sexuality and Relationships in the Lives of People with Intellectual Disabilities is a powerful and important text which is both joyously complex – experience is differentiated; we cannot ignore abuse but must not be overwhelmed by it to the point of shutting risk out – and also unassailably simple: men and women with intellectual disabilities seek love, sex, intimacy and relationship.
Norah Fry Centre for Disability Studies, University of Bristol, Bristol, UK
[email protected]
© 2016 David Abbott
http://dx.doi.org/10.1080/09687599.2016.1219508