A list of self advocacy organisations, and some thoughts about self advocacy

A list of self advocacy projects - and some thoughts about self advocacy

12 January 2019

For many years I have been interested in self advocacy. I’ve written about it, observed it, and tried to support it.

I have been a Trustee Helper with My Life My Choice since 2012. It has taught me so much about how to support people to be effective Trustees. I love being part of such a vibrant and exciting organisation.

I was in a team with BAROD which made the Self Advocacy Projects Toolkit, for All Wales People First, funded by DRILL. Here I am with Alan Armstrong, my co-researcher, and members of Carmarthenshire People First.


To make the Toolkit Alan Armstrong and I ran focus groups with 5 different self advocacy organisations trying to work out what makes a good self advocacy project. Thanks to this, we’ve produced a brilliant Toolkit – free to download from All Wales People First's website http://allwalespeople1st.co.uk/wp-content/uploads/... or available from me. This made me think hard about why self advocacy?

And now BAROD and I have been funded by the RTR Foundation to do some work on self advocacy in England today. Our first job was to list self advocacy groups operating in England. Sounds simple? Well….. trying to decide who to include wasn’t easy, and that’s what has prompted this Blog.

How many self advocacy groups in England?

The good news is that we have found around 100 groups – not bad considering that most people think that self advocacy is in decline. The bad news is that they are unevenly spread. Lots in the north of England, very few in the East Midlands or the South West, and, considering its population, relatively few in London.

The List we have put together will be hosted by Learning Disability England. Here it is list-for-lde16690

What is a self advocacy group?

We had to ask this question so that we could decide who to include in the list. People have argued about what makes a proper self advocacy group ever since self advocacy arrived in the 1980s. It always pivoted round whether a group is independent of services. If a self advocacy group was inside a service, however good it was, it wasn’t a proper self advocacy group. We still had this problem, though nothing like as often because very few services claim to run self advocacy. Now it is much more likely that self advocacy is a project within a bigger advocacy organisation, one of many different advocacy type things they do. For us this begged a big question – how much say do self advocates have in running that organisation? Given we did not have much resource to do this work, we were relying on websites, Charity Commission information, Facebook and sometimes Twitter. Using these sources alone it is difficult to know how much power self advocates really have.

Similarly there are some self advocates I know who would argue that proper self advocacy demands that all Trustees have learning difficulties. Again, quite hard to answer this question from a distance. AND because many organisations which ‘do’ self advocacy do lots of other things too, the self advocacy part may not even have its own board of Trustees. Does that matter?

Finally, we asked ourselves – and our very helpful Reference Group - Do you think we should include organisations which support self advocacy and co-production but are not themselves self advocacy organisations?

BAROD is itself one such organisation. There is certainly a case for including such organisations because in some places, like Cornwall, this is how self advocacy has survived when Cornwall People First closed due to lack of funding. And maybe this is the future?

Time for a different Approach?

We have produced our list. We have done our best to ensure that it’s up to date and accurate. And we do believe that it will be of great help to have such a list – especially if someone can keep it up to date!

But I can’t help thinking it’s time to think differently about self advocacy, not to ask just about its governance, and who holds the power, but to ask

‘How far does this group support people with learning disabilities to have a better life?’

In other words, time to move to an outcomes approach.

Of course, this won’t be easy. It forces us to think hard about what self advocacy should be trying to achieve. When we made the Toolkit we identified 16 different reasons for doing a project.

We put them on this poster, and we made them into playing cards.


The reasons to do projects fall into clusters.

  • Change people’s ideas about people with learning disabilities like training police and nurses
  • Making friends and hav
  • ing fun
  • Building confidence and skills
  • Fighting for rights, our own and other people’s.
  • Earning money for the group or for members

If we are serious about self advocacy we need to wrestle with these different reasons for doing self advocacy. Not to say one is better than another, but to find ways of kite-marking organisations for the quality of the work they do – the outcomes they support for their members.

I’d be interested to know what other people think about this idea. Please respond – even if it is to tell me to mind my own business.For many years I have been interested in self advocacy. I’ve written about it, observed it, and tried to support it.