Self-advocacy for people with profound and multiple learning disabilities

Guest blog from Jan Walmsley on encouraging people with profound and multiple learning disabilities to be more involved in self-advocacy.



Read the easy read summary here.



Self-advocacy and people with profound and multiple learning disabilities do not often go together. I noticed this when I first learnt about it in the 1980s. Jackie Downer, LDE lifetime member and a pioneer of ethnically sensitive self-advocacy put it like this when we wrote a chapter together

“I think it can work but it will take time. And we people with learning difficulties, we got no time.” (Walmsley and Downer 1997 p. 44).

It’s as if we think one day it will happen – but we have yet to learn how to be truly inclusive of people who, literally, do not have a voice.

LDE took the opportunity to address this last year, thanks to a grant from the RTR Foundation to run events to share good practice in self-advocacy. They were due to COVID, on-line. At the first sharing event people suggested that the next one could be about how self-advocacy could include people with severe and profound learning disabilities. No self-advocacy group we knew of had been doing this well.

Where to go for ideas?

First, we thought of Campaign for Change to run a workshop. C 4 C had run a brilliant workshop at LDE’s 2020 Conference. It was about including people with severe and profound learning disabilities. Samir, Brad and Frankie who have that label were there on the stage showing how it’s done.

We also invited 2 parents, Stephen Unwin and Virginia Bovell, to give us their views about what it would take for their sons to be part of a self-advocacy movement. They both have young adult sons, Joey and Danny. Both Joey and Danny have complex health needs and unconventional styles of communication. We felt a bit nervous about this as family members have not always been welcome in self advocacy circles

It was really powerful having Samir, Brad, Frankie, Joey and Danny present at the session – Samir in person on Zoom, Frankie, Brad, Joey and Danny through films.

C4C co-presented using film, and with Samir and his supporter on the Zoom. They talked a lot about accessibility. Getting Samir, Brad and Frankie from their base in Brighton to Manchester to be at the 2020 LDE Conference was a big challenge. They described huge things they had to think about. A van that can take three oversized wheelchairs. A hotel which could provide, and properly house, a hoist. Changing Places Toilets on the way there and back.

C4C’s big message is that just being there is valuable to the disabled people, and to the people they meet. We saw clips of people shopping, having a tattoo, nails done, wonderful images of community presence in action.

But there are lots of obstacles too. Just imagine having to plan a 300 mile journey around toilets. The things that make inclusion possible just aren’t there and they need to be. Hotels with the right equipment. Vans that can take large sized wheelchairs, AND the Changing Places toilets.

Stephen Unwin showed a short film of his son, Joey. He asked, ‘how does self-advocacy work for Joey?’ Joey communicates through really simple Makaton, his eyes, and through people, like his dad, who know him well. Joey doesn’t know what a self-advocacy group is. Nor does he know much about rights. Stephen reckons that statements like ‘I want to live in my own home with people I choose’ are like ventriloquism where Joey is concerned.

Stephen said:

“Don’t get me wrong. I think self-advocacy is the best thing that has happened in the learning disability world. But conventional self-advocacy won’t work for Joey. Joey does know what he likes. He likes guinea pigs, T shirts and Frozen 2 – but when it comes to rights, I don’t think he has that conception. My deepest anxiety is that I’m talking over him, but at the same time I don’t think there is any choice in terms of decisions about his future.”

He argued for us to look at self-advocacy as a spectrum. His family make decisions on Joey’s behalf, motivated by love, not control. In meetings Joey’s very presence is a version of speak up, even though there is no speech. He comes to his EHPC meetings, it’s important that he does, but he does not always want to be there, and, Stephen believes, we shouldn’t force him to stay.

Then Virginia talked about her son Danny. Danny knows what he likes but he needs people around him who can read the signs and symptoms of ill health. Without people who know him really well he could be in serious danger. When it comes to choosing where to live, he would not know that he needs to take into account that his mum won’t live for ever.

Virginia said:

“I have to make those decisions. I campaign on his behalf. The Reach Standards remind me to try to think of things from Danny’s perspective. They may be beyond my son, but they are a really valuable reminder for me.”

In response to would Danny enjoy self-advocacy meetings? Virginia said:

“I took Danny to a London autism rights event once, out of principle that autism rights apply across the spectrum. Danny so did not want to be there. He was very disruptive; people could not always hear what they were saying. I have no conclusions to draw. It’s easy to call for these things but no easy answers.”

Virginia acknowledged that families could be barriers, could be over-protective, and that she herself was learning to step back, to realise that other people can know Danny, can be his interpreters, and make sure his needs are met.

LDE is very grateful to the contributors to this Sharing Good Practice event. It was highly rated by those who attended, a mix of self-advocates, self-advocacy support workers, advocates, students and academics.

I came away thinking that maybe we’ve been asking the wrong question all these years – maybe it’s about building a society where people with PMID can be present, alongside everyone else. Some may then want to be part of self-advocacy, but we can’t assume that’s a direction all will want. The task for self-advocacy is campaigning for a more inclusive world, remembering that that must include PMID – and sometimes even working with parents to get there.