Self-advocacy pioneers still struggling for survival despite 21-year track record

A pioneering self-advocacy organisation this week celebrated the publication of a booklet that charts its 21-year history.

Central England People First (CEPF) – originally known as Northants People First – was set up in 1990, and has always been run and controlled by people with learning difficulties.

Ian Davies, one of its founders, said that working at CEPF had made a “big difference” to the lives of many members who had originally been forced to attend day services.

But he warned that CEPF – like many other self-advocacy organisations – still faces a financial struggle to survive, and said: “We just need to encourage the funders to get their hand in their pocket.”

He told an event in Kettering held to launch the booklet: “It has not been easy for groups like ours and we have had to work so hard to keep the organisation going.

“We hope that with help we will be here in another 21 years. We are not going to go backwards. We are looking to the future.

“It was good to do our history – it has helped us to think about our future.”

Craig Hart, the history project’s manager and another long-standing CEPF member, told the event: “We have done a lot of things together in the last 21 years and we have spoken about things that have affected us. We have got things changed.”

The booklet, 21 Years of Central England People First: A Journey and a Celebration, was funded by the Heritage Lottery Fund.

Over those 21 years, CEPF members have attended conferences in Iceland, Ireland, Scotland, Canada, USA, South Africa, Hungary, the Netherlands and Belgium.

CEPF worked on the first national survey of adults with learning difficulties, while two of its members – Ian Davies and Karen Spencer – were the first keynote speakers with learning difficulties to address the conference of the International Association for the Scientific Study of Intellectual Disabilities, in Finland in 1996.

Jan Walmsley, chair of the project’s advisory group and visiting professor in the history of learning disabilities at the Open University, said: “It’s really important that we remember the pioneering work of organisations like this one.”

She added: “I think the project has been really important because self-advocacy groups like this one flourished 20 years ago.

“There was a lot of money from local authorities and it was a very positive time. People thought they could change the world.”

But she said the situation facing self-advocacy organisations was now not so positive.

In an introduction to the booklet, she warns: “As I have worked on this, I realise that my view is that independent self-advocacy controlled by people with learning difficulties – that CEPF have championed for 21 years – is in decline.”

She says there is little contact between self-advocacy groups, while many are struggling financially and leaders are “getting older”, with no sign that they are being replaced with younger activists.

1 May 2012