Despite some difficult times, self-advocacy is still going strong. Jan Walmsley reflects on what has been achieved, how it has changed and where to go next
Hand-wringing about the state of self-advocacy is common.
However, despite funding cuts, groups closing and the demise of the National Forum, there is plenty to celebrate.
Why celebrate? Self-advocacy has survived in these islands since the 1980s. It is weathering austerity. In 2018, there were more than 100 groups in England.
Contact with people in countries where it has yet to make inroads – specifically Japan and Norway – prompted me to reflect on what we’ve got.
At many events, it now is simply unacceptable to exclude people with learning disabilities. Self-advocates regularly stand up in front of large audiences, speak with confidence and answer questions. A market for things self-advocacy produces – easy-read information, experts by experience, user-led training – makes it possible for agile groups to earn money and migrate from reliance on grants.
Colleagues from Japan have asked how this has been made possible. It is something we must seek to answer – I’m not there yet. However, as an observer of self-advocacy for more than three decades, what I can do is reflect on some questions it throws up.
What has changed?
First, what is self-advocacy? I think it has changed recently and is now less about learning skills and claiming rights.
Speaking Up, Standing Up For Myself and other campaigns are still important. But, as the state backs off providing security and safety, self-advocacy groups are taking on some of that.
In particular, groups that incorporate elements of advocacy appear to be massively significant in just keeping people going – reading doctors’ letters, supporting people to claim universal credit online and providing somewhere to go when you’re in trouble.
I met a woman who had joined after leaving an abusive relationship; another had come after a suicide attempt; a third had managed to stay away from a man who was robbing her because her group gave her support. No longer is it a “nice to have” – for some it is literally a life saver.
The social side is massively important. It always has been one of the great attractions. Now so many people are living alone with little or no support, this aspect has become more significant. Research I did with Barod (a community training and information company) found that having fun and meeting new people were seen as being of equal importance as changing the world when it came to reasons for doing self- advocacy projects (Armstrong et al, 2019).
In addition, self-advocacy is a route to paid work. Employment by the organisation itself is one obvious example (see My Life My Choice’s Walk It Like you Talk It, http://tinyurl.com/ydr83nsf) but it goes wider. Phyllis Smith* led healthy eating groups in her group. She’s now tutoring in a college. Graham Brown* cooked lunches for his group. He’s now working in a care home as a cook.
Inclusion and profound disability
A second question is about who is included. It’s difficult to be certain, but I have visited 12 groups and attended two national self-advocacy conferences in two years, and observed that people with severe and profound learning disabilities were notably absent.
The very language of “speaking up” excludes those who do not use the spoken word, as Jackie Downer, a veteran self-advocate, acknowledges.
“I’m so used to saying ‘my needs’, tough luck about the others. They’re somewhere else. It can work but it takes time, and we, as people with learning difficulties, we got no time,” she says (Walmsley and Downer, 1997: 44).
Does this matter? I think so. There is a danger that, in promoting the idea that with the right support people can do great things, we just redraw the boundaries.
There remain people who are excluded, for whom positive thinking and imagery do not work. Successful self-advocates can unwittingly contribute to this, though it is harsh to criticise self-advocacy for something few manage to do well.
How could we include people with profound learning disabilities? In the UK, self-advocates have tended to exclude families. If we are going to genuinely include people with more significant impairments, maybe this needs to be reconsidered.
Finally, paid support. Some look to a future where the need for support by people who do not have learning disabilities will wither away and self- advocates can run their own organisations. In 30 years, I have seen no progress towards this goal. It’s time to abandon it, and accept that skilled paid support is necessary to run a complex organisation.
So, what next? Self-advocacy matters. Its benefits need to be available across the country. Here are some ideas:
- Include people with severe and profound learning disabilities, perhaps with the help of families
- Link groups so they can learn from each other, which supports Learning Disability England’s work
- Finally, a decent history is urgently needed – to understand where we are going, we need to know how we got here.
*Not their real names
Jan Walmsley is an independent researcher
References and further reading
Armstrong A, Cansdale M, Collis A, Collis B, Rice R, Walmsley L (2019) What makes a good self advocacy project: the added value of
co-production. Disability and Society. 34(7-8): 1289-1311
Barod and Jan Walmsley Associates (2019). Making Sense of Self Advocacy Today. https:// tinyurl.com/ygor7psm
Walmsley J, Downer J (1997) Shouting the loudest: self advocacy, power and diversity. In: Ramcharan P et al (eds) Empowerment in Everyday Life. London: Jessica Kingsley: 35-47
