This is an article by Ian Loynes, SCIL’s Chief Executive, featured in April 2010’s edition of Direct Newsletter (reproduced with permission of HCIL).
In my opinion Hampshire’s Personalisation Experts Panel and the concept of ‘Experts by Experience’ more generally is about bringing the views, experiences and philosophies of Disabled People, their organisations and relevant others together with the aim of developing Progressive Social Policy solutions which enable Disabled People to have a decent existence in the world we live in.
In many of the presentations I make these days I am trying to make the point that User Lead Organisations, and particularly those like Centres for Independent Living, Coalitions of Disabled People etc, have for the last 30 years been at the forefront of every significant social policy advance, and that without them we would not have the social model of disability, direct payments, independent living etc (the list is endless).
My point is that if we want society to continue to be enriched by User Lead Organisations developing innovative, user-focused solutions and alternatives, then we have to create an environment where these small, user-developed organisations can exist and flourish. If we allow User Lead Organisations to continue to die out then as a society we risk going back to the dark ages in social care terms.
I also make the (perhaps controversial) point that in my opinion, Southampton Centre for Independent Living does not represent the views of ALL Disabled People. What we do is to represent the views of Disabled People who are not content with being passive service recipients but want to control their own lives and develop their own solutions for their needs.
I characterise this by saying Southampton Centre for Independent Living represents the views of people who have a Progressive Social Policy view of the way forward for Disabled People. We do not try to represent the views of people who, for instance think Day Centres and Sheltered Workshops are good ideas.
I think if we tried to represent all these views then we would:
(a) present a confused and contradictory message, and
(b) cease to have any positive input in social policy terms.
What I see as Southampton Centre for Independent Living’s mission is to seek to help all Disabled People to understand our message, and how this can enable them to become empowered and control their lives and celebrate who they are – all a bit evangelical I know, but that is what gets me up in the morning!
I also think that this is how User Lead Organisation’s should sell themselves to Local Authorities – we can be useful to them best in this way.
I find this a very interesting subject, as I do the issue of ‘representing all disabled people’ and this is also why I think the Personalisation Experts Panel is such an innovation body worthy of all our efforts to develop.