Simon Fanshawe

When I ring Shaun he is checking the fire alarms at the Tyneside Cyrenians building. He’s their maintenance man. Not so long ago, if I’d rung him he’d probably have been drunk. He drank to pass the time. He was never an alcoholic, just a chaotic drinker. “I could take it or leave it. But most of the time I’d take it”, he says ruefully now. His is a classic story. For no particular reason he “fell by the wayside’ after school and for seven years drank and got into trouble. His parents threw him out. He slept rough, lived in hostels and generally failed to get it together. Eventually he went back to live with his dad and one night, after drinking, crashed his dad’s car. His dad threw him out again. It was the wake-up all. He’s not sure why, but since then, with the exception of the odd pint on a Friday night, he’s been teetotal. Now with a partner, Lisa and two kids, Ben, 2, and little Shaun, 6 months, he says he hasn’t got time to drink. It’ll be three years in September that he’s been the maintenance man.

Everybody speaks very highly of Shaun. But his story is about more than just personal will. It goes back to when the Cyrenians decided to improve their hostel. They could have just got in a contractor. Instead they decided to recruit from the people who used their services. The risks, according to Stephen Bell, the Cyrenians chief-exec, were huge. But the potential rewards were enormous. The challenge was not so much that in order to satisfy the funding and give the guys a real chance of working in the building trade afterwards they would all have to achieve an NVQ level 2, but that it wasn’t really the building skills that they needed. It wasn’t about getting them a qualification but supporting them so that they could sustain themselves in work, after in some of their cases having been out of employment for 10 – 15 years. You can learn bricklaying or timber frame assembly once you’re on site. But it’s getting on site in the first place, sober, regularly. And then being able to apply for other jobs. Even as one person put it, learning to shake hands again.

With University education, we take this for granted. Just because someone studies history they’re not necessarily learning to be a history teacher. They’re learning to marshall an argument, write coherently, analyse facts. They are learning to deploy themselves in the outside world of work. But when it comes to basic training, the Learning and Skills Councils and the other agencies tend to be obsessed with qualifications and for projects to squeeze the other, and ultimately more important support out of the money available is almost impossible. June Barnes of Thames East, in the midst of the East London regeneration spree that is the Olympics, says they can only do it because they are big enough and financially robust enough. They have mentoring services in their organisation already. Funding needs to be more imaginative in the first place, she says. Start with the broad human objectives with people who have been out of the swim for so long and work back to the NVQ.

The Cyrenians had to find a partner who understood this. With so much building going on there are considerable opportunities to get the long term unemployed into work. But the industry finds this very difficult. Mostly the big companies contract the work out to small businesses who just don’t have the capacity to mentor people like Shaun. In the Esh Group however, Cyrenians found a company with local roots in the northeast that, unusually, employs 1200 people directly. Including one Peter Darkings, who according to his boss Bill McCafferty “has an exceptional ability to communicate and grow people. He rose to the occasion becoming father and brother to the guys with inspiration and patience. Although when it was needed he can certainly tell them, as we say in Scotland, ‘which way is up’”. Darkings, and a man called George Evans who was too modest to talk to me, ran the project.

Shaun’s story is not just a personal triumph, but the project’s victory over the narrowness of the funding system. Of the thirteen people who worked on the hostel rebuild, none of them are living in hostels anymore and seven have jobs in construction. The NVQs are really the least important piece in the jigsaw of their rebirth. It was the investment in them as individuals. The project title was a play on words. Cyrenians Self-Builders. It wasn’t a hostel Shaun built. But with his foreman and his mentor, it was himself and the rest of his life.

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”

CORNERSTONE
15-17 Hawley Road
Hinckley
LE10 0PR
01455 617817

SupportActionNet
http://www.supportactionnet.org.uk/

Sarah Andrews
Passion
http://www.passionconsultancy.org/

MENCAP
http://www.mencap.org.uk/

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”

Over the months I have written about many people whose resilience, intelligence, quirkiness or ordinariness tell us a story about public service – the best and the worst of it. At the core of all these tales is a belief that in working to improve people’s lives we owe it to each other to be as imaginative, as innovative, as humane and just as brilliant as we can. To engage with the world to make it a better place and, let’s face it, brighter, sunnier and more fun to be alive.

This month in Brighton there is a hole in the city and in our public service after the death of a splendid, funny, clever and original man who exemplified all those values and entirely unpredictably became the deputy chief executive of the Council. Tony Miller was not your usual council officer – and I mean no disrespect to the many brilliant people who are. But if I tell you that on the road to being a senior executive he started one of the first listings magazines in the country, owned two second hand book shops, promoted the Real Sounds of Africa before any journalist minted the phrase ‘world music’, was an early champion of Norman Cook in the Housemartins days, probably managed the Levellers (no-one can quite remember) and even, in what seems prehistory when I was a starting out as a comic, was my first agent, you’ll begin to see the idiosyncrasy of his journey.

He was physically slight, freckled, verging on the ginger and radiated a sardonic warmth that gave his sense of humour a wryness and a dryness. When people die at 53 of a horrible illness, the temptation to find some kind of consolation through hagiography is very strong. But with Tony there is no lie to the sheer volume of praise heaped on his memory by those he touched and those he worked with.

His values flowed from his politics. But although he was a Labour man through and through he was peculiarly un-tribal. He talked the language of true politics which, at its very best, is when you can find some common expression between people. What do I mean? I mean that when devising a citywide campaign on diversity, he didn’t ask me or some other predictable representative of a strand of diversity to chair it. Instead he invented what he called “The Supporters Club” and asked the managing director of the Football Team to chair it. This put a rather different spin on the notion of diversity.

He was always finding ways of knitting together the story of our community. He saw the possibility in the Millennium bid for city status for people to coalesce around their pride in the city. One of his greatest friends and colleagues who worked with him every day summed it up as his ability to talk to two different people of opposing views and yet get them to agree on a course of action that satisfied them both. And then, always his first love, to get a good media story out it. If public service is going to improve the city, why keep it to yourself? That is real politics and is founded on an underlying optimism that even opponents can discover shared values and on the basis of what they do have in common commit to the public good.

He also never took the obvious angle. He was a great promoter. He never lost the PT Barnum instinct that once made him put on a Real Sounds poster “one of the greatest live acts of all time”. So to promote environmental change, long before David Cameron got on his bike, he invented a campaign called Nine Lives in which, on line, nine people in Brighton recorded video diaries of their lives as they changed them to become more sustainable. They became the city’s poster citizens of greening and it won many, many awards for originality in a public service campaign.

He just didn’t do things as other people did. He spoke a language rooted in a wide experience of the world. He respected the processes of local government, but they never limited him. His examples of strategy came from his bike ride to work or his young son on the tennis court. He never drowned the human purpose of what needed to be done in the soulless language of official jargon or mumbo-jumbo. He never lost an outsider’s humility in the way that he saw the world. He was a terrific public servant and we miss him dreadfully.

published in The Guardian 21.03.07