Self-advocacy is the ultimate preventive service – but it is under threat.
If people with learning disabilities are empowered to speak for themselves, they are more likely to live more fulfilled lives and change attitudes towards them.
The groundbreaking All Wales Strategy in 1983 was the first strategy to recognise that a learning disability is not a health condition so should not be treated in hospitals. It stated that people with learning disabilities should live “normal patterns of life in their local communities”.
The strategy also recognised the importance of the voices of parents and carers and gave them more agency in influencing policy.
However, the idea of people with learning disabilities speaking for themselves was not something that was considered back then.
That came later when activists such as Gary Bourlet introduced People First to the UK. The movement championed the fact that people could and should speak for themselves and not be subservient to those supporting them.
Over the years, All Wales People First worked hard with the Welsh government to ensure the voices of people with learning disabilities were central to groups such as the Learning Disability Ministerial Advisory Group in Wales.
The advocacy grant scheme (pump-prime funding from the Welsh government for advocacy) saw a really strong network of self-advocacy groups develop across the country. Wales led the way thanks to the faith the Welsh government had in people being able to speak up for themselves.
In 2012, when I was appointed chief executive of All Wales People First, with experience of staying in learning disability care services, I hoped to be part of a new movement that would build on the brilliant things we achieved in Wales.
Fast forward to 2024 and the advocacy grant scheme is gone and self-advocacy groups are merely existing. I find myself protesting with others in support of the Homes not Hospitals campaign led by campaign group Stolen Lives
Far from building on what we had achieved, we are regressing.
The picture is similar across the rest of the UK. People still struggle to secure meaningful employment, to maintain friendships and relationships and to be accepted as equal citizens. In that sense, nothing much has changed.
Many people are under enormous pressure to find work and face benefit sanctions if they can’t secure work. Covid-19 saw many day centres close – many remain shut.
Self-advocacy’s decline seemed to come after the 2008 financial crash. Add to that budget cuts and pandemic costs, and councils have rethought priorities. Self-advocacy appears to be desirable, not essential.
Cruelly, disabled people are being labelled as economically inactive, tarred in the media by the same brush as those who could work and choose not to.
The solution?
Whatever party forms the UK government, human rights should be sacrosanct. The government must do all it can to ensure disabled people are not demonised, not encourage an inaccurate, right-wing narrative that they are partly to blame for the economic mess.
Governments should focus on both financial and moral responsibility. Part of the latter is to make sure all citizens have a voice.
Joe Powell is chief executive of All Wales People First. Read more by Joe on the NDTi blog
