A recurrent theme in my 10 years’ involvement in service user participation has been how we increase the breadth of involvement. The service user groups in which I participate have had a committed core membership that has remained the same for some time. This gives us a number of service users with the confidence, experience and skills to challenge, to inform and to make creative contributions.
And we, as individuals, have benefited from our experiences: many of us have grown in confidence, developed new skills and broadened our horizons, socially and politically. At the same time, we have puzzled over why it was that younger people – most of us seem to be middle-aged – and why people from ethnic minorities in particular were under-represented, if they have been represented at all. How can we communicate our beliefs that active participation can make a difference to our lives, both in terms of shaping the services we receive and empowering us as individuals?
So, in a bitter-sweet way, it was reassuring to see that this problem has been recognised in the Disability Rights Commission’s discussion paper, Changing Britain for Good. Aimed at what needs to be done to eradicate inequalities in society, the first of the 10 priorities for change is to “increase disabled people’s participation”. Too often, disabled people are seen as beneficiaries of, rather than participants and contributors to, their communities.
The national service user organisation, Shaping Our Lives, points out that one of the reasons for the lack of service user participation, and the small scale of disabled people’s involvement in community organisations, is due to the real fear that people will lose their entitlement to benefits if they are seen to be doing unpaid “work”.
This is true, but it’s not the whole picture. Even if systems continue to change, to encourage people to take more responsibility for their own lives and in contributing to their communities, many disabled people are still trapped in the mentality of dependency. In behavioural terms, they are the victims of learned helplessness.