This journey started when I met Brian and Amy at a conference. The plan was that I interview them in front of an audience of support workers. It was a gathering brought together by Support Action Net, which is a framework for organisations working with vulnerable people that are dedicated to getting closer to their service users’ social and emotional aspirations. These organisations want to relate to the clients they work with through their sense of self; through their passions, interests and abilities rather than their problems.
And Brian and Amy are in love, so we talked in front of the two hundred people about romance and children and sex and living together. There was quite a lot of laughter and quite a lot of intimacy. Brian and Amy told me afterwards they were very proud to have done it. Most of the audience saw that. But some of them didn’t. You could hear the bristling from the back of the hall. “Inappropriate”, “intrusive”, “outrageous for SF to ask the couple about their sex life” and “I felt totally uncomfortable with it” said a minority in the feedback.
You’ve probably guessed by now, Brian and Amy are not a ‘usual’ couple. Amy has Downs Syndrome and Brian has ‘moderate learning difficulties’. And I was fascinated by the discomfort in the audience. I had found the interview entirely new territory and the issues of consent and vulnerability that it raised unnerved me. We rehearsed all the questions in advance and in that process I found myself challenged at every level by the way the workers who support Amy and Brian behaved around them. I found that never mind how I tried, my inexperience meant that I still had to work hard to avoid patronising them, to slip ever so slightly into “Does he take sugar?” mode by not asking them the questions I would ask any other interviewee and, if I did, not wholly trusting their answers. Their support workers on the other hand, who come from a small company in Hinckley in Leicestershire called Cornerstone, had a very different attitude. They started from the simple but unusual point that Amy and Brian do know what they want, express it and can, as one of them put it, “like the rest of us, reach for the stars” So I went to Hinckley.
Cornerstone was started by Kathy Aucock in 1997. She had long been a social worker and had developed a passionate view that people with learning difficulties could live independently and that to do that, first they needed a space where they could experiment with different patterns of life. What was needed, she thought, was a place where they could express what they wanted and then be supported to make it happen. She wanted to get away from “the blanket assumption that people with learning difficulties couldn’t learn the skills they needed”. She only founded Cornerstone because, in the end, no one else would do it. So she chopped her house in two, and three people with learning difficulties came to live in the other half.
Brian and Amy met there four years ago. Amy fell immediately “I felt really happy when I was around him”, she says, “He’s a bit sexy. And I felt lovely and strange meeting this sexy guy”. Did Brian remember seeing Amy the first time he went to Cornerstone? “No!” He laughs. He has a laddish twinkle. “I was a bit nervous as I was leaving my foster family. I was broadening my horizons, that’s what they say”. His mind was on other things, but in time the relationship blossomed. “We started to watch football together. And wrestling.” says Amy, who seems pretty aware that she’d have to put up with this blokeishness if she was going to net Brian. “I taught her the offside rule”, he says. In many ways they are a very traditional couple. Brian likes the pub and football and Amy is house-proud and loves to cook. He goes out to work. She stays at home.
It’s not so long ago that they would have been actively discouraged in forming a relationship, let alone living together in their own house. As David Congdon, head of campaigning and policy at Mencap, says, “We’ve finally begun to move from a situation where a large number of women with leaning difficulties were sterilised without their consent to now when they are being given contraceptive advice.” There is no medical evidence to suggest that learning difficulties or Downs have a genetic component. But Amy and Brian will not have kids. This is partly because Brian is dead clear about not yet wanting to get married, despite Amy’s constant requests that they do. “I am too young. I have got loads of time ahead of me,” he says. Typical man. But also because Amy has a weakness in her heart, which would make pregnancy dangerous to her health. She’s never expressed any interest in kids either. As Deana Salt, one of the Cornerstone workers says, “ She has always said she wants to go to college, get married and live in a big house. No mention of kids or work. Ever!”
I found myself saying at one stage “Well maybe it would have been quite stressful for them to have kids anyway, being parents might have been hard for them”. And Deana just looked at me and said “Why?” Indeed. Assumption unmasked. Alison Shea, the Assistant Director for Housing & Support services at Mencap, told me a story about a vicar who wouldn’t marry a couple who both had Downs syndrome because “they wouldn’t understand the implications of getting married, what the consequences of it were.” And she just said to him. “Well, which of us does? We just fall in love and do it!”
There are obvious issues of consent when it comes to sex and sexual relationships. The law in the Sexual Offences Act 2003, according to Sarah Andrews, an expert in the law around sex and learning disability, is clear is about protecting people if a “mental disorder impedes choice”. But apart from that it is, as with everyone else, a simple question of consent. But there is still unease from social workers and from parents. Salt points out that parents of people with learning difficulties often view their kids “as eternal children. And we have to help raise their expectations of their child.” She and Aucott both have stories from not that long ago of parents dressing their grown children in ankle socks, referring to their adult day centre as “play school”. One young woman they know was still being put down for an afternoon nap at twenty-seven years old. And parents and social workers can, often from what they think are the best of motives, be very overprotective. Shea tells of one father who wanted them to give his son bromide. When it comes to sex, social workers regularly think, even if they no longer say, “you just shouldn’t allow it”, she says.
But when Brian and Amy were clear about wanting to be in a loving relationship together, Brian’s social worker, Nalini Osman was immediately clear that he would, like any other young guy, need sex advice. “It was not a question of testing what he wanted”, she says, “but of understanding the implications. What did it mean for the support we gave?”
She arranged for Amy to speak to an advocate. “We had to make sure”, says Osman “that she wasn’t just going along with it. And she wasn’t. She really wanted it”. Osman thinks that many social workers are just very risk averse, but “that results in people being treated as lesser human beings.” Andrews says bluntly “People should be allowed to make mistakes. We all do! But sex and loving relationships are good things in people’s lives. It’s awful to see them as a problem. Can’t we want to see people in relationships without having to have a case conference about it?”
In their flat, Amy is making me tea. Kathy is perched on the sofa and we are laughing about Brian’s driving lessons. He’s had about eight so far. It will mean a lot if he can pass his test. The Co-op, where he works in the warehouse, is a twenty-minute drive but an hour and a half by public transport. At the moment though it’s a bit touch and go “I still have to look down at the pedals when I go from the accelerator to the clutch” he says, “to make sure I am pushing the right one”. Much laughter. Amy says, “I want to drive too”. Brian says dryly:” My advice is to keep of it”! He may never learn to drive. “But none of us really knows we can till we try, do we?” says Salt. “But it was on Brian’s wish list, so he has to have to the opportunity to fail, if need be”
Attitudes to people with disabilities have changed remarkably over the last ten years. The general view is that the change started with the emptying of the institutions by the Community Care Act in 1990 but has been greatly enhanced by the rights advocacy of the Disability lobby and the power of Valuing People the Government’s strategy for people with Learning Disabilities, which emphasised individual choice and respect. But as Osman says “that’s all very well on paper, and it’s good, but it doesn’t always happen”. Parents are still overprotective, vicars still patronise and social workers still back off making sure that people make their own choices about life and relationships for fear of something going wrong.
But as I leave Brian and Amy’s Aucott says “People often say ‘what if it breaks up?’ Well that’s a question we all ask ourselves. So many people with learning disabilities go through life without experiencing the quality of life Brian and Amy have. It’s still pretty unusual. Which is odd, because they only ask to live an ordinary life”
15-17 Hawley Road
Brian and Amy (surnames, checking) are not a ‘usual’ couple, though they are in love. I met them when I chaired a conference for professionals who work with vulnerable people. I interviewed them about romance and children and sex and living together in front of an audience of 200 people. There was quite a lot of laughter . Brian and Amy (ages) told me afterwards they were very proud to have done it. Most of the audience saw that. But some didn’t. You could hear the bristling from the back of the hall. When the feedback forms came there were comments like: “Inappropriate”, “intrusive”, “outrageous for Fanshawe to ask the couple about their sex life” and “I felt totally uncomfortable with it.”
The couple are unusual in that Amy has Downs Syndrome and Brian has moderate learning difficulties. I was fascinated by the discomfort in the audience. As for myself, I had found the interview entirely new territory:I I had to work hard to avoid
patronising them, to slip ever so slightly into “Does he take sugar?” mode by not asking them the questions I would ask any other interviewee and, if I
did, not wholly trusting their answers. Their support workers on the other hand, who come from a small company in Hinckley in Leicestershire called Cornerstone, had a very different attitude. They started from the principle that Amy and Brian know what they want, express it and can, as one of them put it, “like the rest of us, reach for the stars”