Contenido teórico que fundamenta la investigación

We start by recounting a story collected as part of two-year project funded by the United Kingdom’s Economic and Social Research Council (RES-062–23–1138) (www.rihsc.mmu.ac.uk/postblairproject): ‘Does every child matter, post-Blair: The interconnections of disabled child-hoods’. The study’s broad aim is to understand what it means to be a disabled child growing up in England. The study is based in the north of

England and runs from September 2008 to April 2011. The participants include disabled children aged four to sixteen, their parents/carers, and professionals who work with disabled children, including teachers, third sector workers, health workers and social workers. One element of the fi eldwork involves interviewing parents of disabled children. Parents were interviewed normally three times over a period of eighteen months.

A vignette from one of the interviews is presented below. Names have been changed for reasons of anonymity.

Alex is fi fteen and lives at home with his mother Isobel, her partner Gail, and two younger sisters in the South of England. He attends mainstream school. Alex is in the full swing of puberty. Isobel, his mother, described how he had found masturbation and the diffi culties she has discussing this with him. Alex chooses to talk about masturbation to Isobel and she wishes he would talk to someone else about it! When Alex fi rst dis-covered masturbation, Isobel recalled, he would ‘come downstairs from his bedroom looking very hot and bothered’. Isobel and her partner Gail discussed this and felt that Alex didn’t have a very good ‘method’.

They discussed whether they should talk to Alex about this and whether it was alright to show him how to do it. They concluded that it wasn’t!

Over time Alex has started to talk more and more about masturbation.

He says he doesn’t like the feeling. He often talks to Isobel about it and recently said that he ‘wished his penis was a bottle of coke and his tes-ticles were roast chicken’. When Isobel asked him why, he said that he liked coke and roast chicken. Isobel feels that this is a part of her son’s life she was not expecting to be part of. She is interconnected with an area of his life which is usually ‘private’ and which has become an arena for discussion.

Alex has started noticing girls. He watches TV and picks out the girls he says he ‘likes’. When Isobel went to an event at school with Alex, he pointed out (very obviously) several girls to her. He tells her he likes the touch of girls – although Alex isn’t sure whether he is able to touch girls and Isobel has tried to say he can only touch a girl if she agrees fi rst.

The Special Educational Needs Coordinator (SENCO) at the school has also spoken to Isobel about Alex deliberately arousing himself at school. The teaching assistants have told him to stop. The SENCO asked if this was something Alex did at home, Isobel explained he didn’t and that he knew that if he wanted to do that he should do it in

his bedroom. Isobel wondered about the level of surveillance of home by school, but felt that in terms of ‘consistent’ messages for Alex, she had to share the information with the SENCO. Isobel has also tried to talk to her daughters about the possibility of sex and relationships for Alex. She feels that her daughters may one day have a say in whether or not this is a possibility for Alex. She told her daughters that ‘people with learning diffi culties do have sex you know’. She couldn’t work out whether their shocked reaction was because her daughters had never thought of their brother having sex or because their mother had used the word ‘sex’! Again whilst siblings may share sexual stories the transmission is normally between siblings not with the parent as mediator.

The project has uncovered a number of stories similar to the account of Isobel and Alex. During interviews huge embarrassment hung in the air. Stories were often told off tape. It was, and remains, very diffi cult for parents to talk about their children’s sexuality, particularly with professionals, for fear that their children’s sexuality will be pathologised or their own parenting will be seen as deviant. To have the conversa-tion at all is risky: it literally and metaphorically exposes parents. There are useful academic exceptions to this, for example one demonstrated by Rogers (2010), who writes as a feminist mother about the sexuality of her daughter labelled as having intellectual diffi culties. We know that discourses of sexuality broadly ‘support a normative image of sexuality as heterosexual, private, ideally reproductive, and above all autonomous’ (Shildrick 2009: 70). Any deviations from these norma-tive images, such as those reported by Isobel, risk drawing unneces-sary attention to the ‘private’ context of families. The truth is that the disabled family is anything but private, with families of disabled chil-dren being amongst the most governed, surveilled and assessed of all families by professionals, policy makers and researchers (McLaughlin et al. 2008). Consequently, while similar discussions between sons and mothers about masturbation may well occur in all families at some point, it is important to acknowledge that the intersections of disability and sexuality create particular moments of tension and challenge. That said, we fi nd the account of Isobel and Alex inspiring, thought-provok-ing and affi rmthought-provok-ing. Read through a Deleuzian lens, we will argue, Alex and Isobel’s story offers us real possibilities for rethinking sexuality and disability and for challenging normative anxieties around sexualities that deviate from the accepted norm.