This is the first in a series of blogs about what it means to have a good life for people with learning disabilities, and why it is so difficult to achieve.
Back in 2010, Kelley Johnson and I, with Marie Wolfe, an Irish self advocate, published a book, Towards a Good Life for People with Intellectual Disabilities. We struggled with the conundrum that we appeared not to have moved forward in thinking about what a Good Life means for people with intellectual disabilities for about 30 years. Back in the 80s we were talking about an Ordinary Life, and that seems to be the aspiration we have today, that people have work and a decent home. But, we asked, is an ordinary life a good life? And why is the challenge of securing even the basics of an ordinary let alone good life so hard for people with intellectual disabilities.
To help answer our questions, Kelley delved into western political philosophy. There she found at least part of the answer. Western philosophy lauds reason above all else. A good life is one where reason governs the passions, and for several philosophers, reason is a prerequisite for entering a social contract which enables us to live in harmony together. But reason is not an area where people with intellectual disabilities excel, indeed it may be that absence of reason is one of the defining characteristics of intellectual disability. Hence the tendency to ‘other’ people with intellectual disabilities, to regard them as slightly less than human, so truly awful treatment, like that handed out to Stephanie Bincliffe who died after two years in solitary confinement, weighing 25 stone. Or the death of 18 year old Connor Sparrowhawk who died because staff on the Short Term Assessment and Treatment Unit did not care enough to manage his epilepsy, becomes easier to understand – although NEVER to condone.
Where does this rather depressing thought lead? I have to confess that we did not come up with any magic bullet solutions. Indeed, we concluded that one of the problems is that we continue to believe there are magic solutions, that each generation finds something – whether it is institutional care, normalisation or community care; whether it is the social model of disability, independent living or personal budgets – which it is believed will lead to a better life for a heterogenous group of people. In the end Kelley and I put some faith in the idea of ‘belonging’, supporting people to sustain relationships, whether with family, friends, or even with long standing staff, as a route to an all important sense of belonging. In the conclusion we wrote this
In our haste in the past to relocate people in the community we have focused very much on adapting them to fit in.
We are still doing this with short term ‘reablement’ programmes, for instance. But this is not enough. As Sigmund Freud commented, the meaning of life is work and love. Broadly interpreted, this indicates a life with meaning and close relationships. This seemed to us then, and it seems to me now, to be a good position from which to start working towards a good life.
My next blog will put forward some ideas about how we might go about doing this.