The dignity of risk

Someone sent me a link to “The Strangest Village in Britain” (http://bit.ly/dbkQYv)  – a documentary from 2005 about the Camphill community in Botton, North Yorkshire. Amazing what people come across on utube. According to Wikipedia (http://en.wikipedia.org/wiki/Botton,_North_Yorkshire), Botton  is a small village in North Yorkshire, England, formed in 1955 and with a population of 280, around half of whom are adults with learning disabilities. All of the people who live in Botton live in large houses with one or more “house parent”.

Botton has some parallels with Shared Lives. It is an attempt to create a life, not a service and people live in households in which disabled and non-disabled people share their lives. Botton provides meaningful employment (for which it has won awards) and allows people who live there to build real relationships, beyond the usual boundaries of professional/ client.

There is a kind of integration here, too: dozens of non-disabled volunteers come to Botton from around the world and live alongside its residents. Botton certainly appears to provide a very safe and supported environment in which people experience some autonomy and responsibility in their day to day lives.

But as the rather predictable title of the documentary I was watching suggests, Botton is not a mainstream community. At last year’s Conservative party conference, there was some enthusiasm for community-type approaches to supporting people with learning disabilities, to the horror of some colleagues in other organisations who worried about a return to long-stay segregation.

Little provokes fiercer debates than the issue of “mainstream” versus “special” services for people with disabilities. Particularly amongst professionals – see the debates on the LD forum (http://www.choiceforum.org) about the closure of day centres for instance.

A family carer once told me how she was desperately worried about her son who was, in her view, being moved against his wishes and best interests, out of a shared home into “independent living”:  a flat by himself in a difficult estate. He heard voices, particularly when on his own, so living with other people had been working well, but his council believed that group homes weren’t “personalisation”. His mother said “I don’t think the community’s going to be turning up on the doorstep bearing casseroles”.

In the council’s view, that young man was being helped to live independently. Getting him into a flat on his own probably boosted the relevant inspection score. But it was a particularly narrow version of independence, which managed in the process to ignore his choices and perhaps his desire for something more like inter-dependence. Similarly, whilst few would want to build new day centres for people with learning disabilities, closing them can mean ending what had been a huge part of daily life for some people, who may lose touch with friends they had been close to for decades.

How do you change a system, and people’s expectations, without people getting trampled in the stampede? Families often have a desperate desire to keep the people they care about safe, particularly when they have had poor experiences of services which don’t listen to their concerns and expertise. They are labelled as being “over protective”, with little recognition that they may have genuinely been let down by services which had promised they would keep an individual safer and better-supported than the family could.

I think the answer is that you keep trying to focus on what people actually want. I’m sure that many people who live in Botton love living there. And I’m sure people will continue to want to live there and some families will wish to see their relatives somewhere that appears safer than the outside world, particularly whilst other services are not always working well and we live in a world with a far from perfect track-record of valuing and including people who are different.

I wanted to work with Shared Lives carers and other small-scale and family-based services (in the broadest sense of “family”) because I felt that they represent a middle way between a view of independent living which can lose sight of the importance of our close relationships and a return to more segregated forms of support. Shared Lives is based on families and all kinds of close relationships, but the success of an arrangement is also judged on whether the individual has made a whole network of new friendships and links into their local community. This kind of balance can help people to achieve all sorts of goals. Some move on from Shared Lives to live in their own place. One service was asked recently how it managed to achieve higher rates of employment for disabled people than the other services in its area.

So I feel people should have the choice to live in a setting now seen as deeply unfashionable by some in the sector, but that should always be a choice based on having had the opportunity to experience different versions of independent living. Meanwhile, we should all work towards a world where people find such safe havens a little less necessary.