Interviewer: Jan Walmsley
Support: Joanne English (Joanne’s words are in italics).
Patrick Burke speaks to Jan Walmsley about his experience of self-advocacy since the 1980s.
How did you get started?
Bill Heron, Jean Hyatt, Jackie and someone called O’Caroll came to a meeting at Finmore Hall.
They came to see the people who lived there.
We’ve got our rights, that is what they said.
I said I don’t know about the Advocacy Group.
Catholic Cathedral, Hope Street, we had an office up on Hope Street. We were there for about 5 years, then we’ve been here 9 to 10 years.
1987 it started.
1988. We wanted to start one. A People First.
From there, Finmore Hall, I moved into a community house. I didn’t know anyone then. It was just the start of moving out of long term care. The only one I knew was Bill. Then Jean Hyatt. You can talk about what you want to talk about. The first time ever that I spoke to anybody. I was about 40-41. I’d spent my life in long term care from the age of 5.
It’s changing as well. Lots of young people. I’m proud of that. We’ve got one new advocacy group going. A young PF group.
What difference has it made?
It made me speak out. 1000 people with learning disabilities under my belt. I know every one of the members. I want people to come to me. I want the advocacy group to still be around.
In the 80s we started talking to Council, nurses, doctors, psychologists, went to talk to people in the day centres. We did lots of training. The boss of Liverpool didn’t like the ideas. You’ve got to put your own voice into it.
I got to know Ian (Davies) before we had the Conferences, when we got together. The Conferences to tell people what we want, we spoke out for 150 odd people with learning disabilities. Every year we have a Conference in Blackpool. People First Merseyside started the Blackpool Conferences. Having them conferences it woke up people’s minds. People there I knew from Calderstones. They made people feel powerful.
I remember being at a Conference, at the beginning a young man in the foyer saying nothing, just looking, after a couple of days he was joining in. It was about taking power from each other. People who’ve not spoken up thinking if he can do it, I can do it.
Siobhan talks about following in Patrick’s footsteps.
I say you got a long way to go girl. The first year I started they went to Canada. Peter Kinsella said to me we’ll go to America. 2002 went to Australia Inclusion International Conference.
I remember when you started Joanne. Joanne is very good, sometimes she doesn’t have a hat on. She can be alright when she is asleep.
Has it changed a lot?
Yes, younger people, get more young people involved. More of a say. Not what the staff want. We’ve got a young member and she goes to college. We’ve got to get 16-17 year olds involved. I’m saying to Joanne we need an office for younger people. It’s got to be maintained.
Younger people have had a different experience. They don’t see the need in the same way as I see it.
The younger generation, mums and dads are telling them one thing or another.
We don’t have any relationship with Liverpool now. They took the funding away 8 years ago. Sefton still give us core money to hold meetings. However, recently Helen and I went to a meeting with them. They are thinking about it. There is very little in Liverpool.
It may get stronger, it may not. There wouldn’t be any self advocacy in Liverpool without me. Helen is 21 years this year.
It’s a subtle change. When I first started there was still a fight. People with learning disabilities had to take power. Why this People First works, how I make sure I have to give permission for the members to have power. Staff know people with learning disabilities have to be in control. I say to Patrick I want you to criticise me.
Parents and carers had been focused on protection, there had to be conflict. But now … then it was more obvious. Education now is better, no more long term care, but to be honest, no I don’t think they are more powerful. It was more of a movement. Now it is more subtle. There are still as many people who don’t know they have power, still as many who are afraid to tell you off, you’ll send me home, they think it is true.
You don’t tell us what to do.
I say it is OK for you to tell me off. We remind you of where power sits.
When things go wrong people look to the people who are paid. But you have power, it’s different to being in charge.
It’s changing for the worse, not the better. Self-advocacy is about giving you options. Young people are afraid to disagree with Joanne. I tell them you can tell them where to go. I can’t see that happening.
Patrick see things different to me. We do have good leaders here. Trainers. Presenters. Siobhan. Inspirational. Passionate. Phil’s work on hate crime.
The opportunities are different. Valuing People gave us a platform. Partnership Board – Executive Board – Regional – National – Taskforce that spoke to Government. It was easy to be involved. The Partnership Board paid people like me to support people with learning disabilities to be part of that structure. Now there is no clear structure or hierarchy. Then there were people at every level, including the National Forum. Now we have to create our own opportunities, and it’s piecemeal.
I used to like going to those meetings with Joanna. Back then you knew all about those meetings, when they were, who was there.
No clear opportunities to make a difference.
Other advocacy groups who don’t have our history. We need a younger generation that’s my vision.
When person-centred planning started, individual services have isolated people. At a big Day Centre they were in a big group. One of our Day Centres used to do piece work. It gave people a sense of self worth. Much as we criticise the Day Centre mentality, togetherness meant power.
When I started (in 2001) there were 9 Day Services in Liverpool. I would just drive in to take Tommy and Joe to the meeting, we had that kind of relationship. Individual planning and the Day Centres closing took togetherness away.
We got people out of Day Centres into self-advocacy. Day Centres were told to let People First in. There isn’t any of that now. It’s going to change again. It is going to be a difficult thing. It will work if it is done properly.
The publisher is the Centre for Welfare Reform.
An Interview with Patrick Burke © Patrick Burke 2021.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
The People First movement leads the way in self-advocacy today, but there were also earlier developments which should not be forgotten.