Interviewer: Jan Walmsley
Katrina Kurowski shares her experiences of self-advocacy in England and Wales since the 1980s.
I worked for Camberwell Health Authority in the early 1980s where I set up a women’s health group for women with learning disabilities who had been resettled from institutions. This was my first step into supporting people to speak up and voice their opinions in a place they felt safe. I was shocked at some of the stories women told me about the abuse they had suffered both within their families and in the institutions they had lived. It not only opened my eyes, but also made me realise that unless people had the chance to speak up for themselves, nobody would know about how they were treated. I also realised how important it was for people to have peer support from other people that understood what they were going through.
Around this same time, I did the ‘Patterns for Living’ course with the Open University. It was a brilliant course and it made me even more determined to work alongside people with learning disabilities. As a staff development and training officer, I started by including people with learning disabilities in team building days with their staff teams, where people came in for the last hour or so of a day’s training to tell their staff how they felt they were doing in their jobs as support workers. Most of the workers really enjoyed this experience and it soon became part of their job to check out how they were doing with the people they supported. It may not seem very unusual now, but it was nearly 40 years ago!
When I decided to leave England to come and live in Wales, I decided I didn’t want to work for ‘the system’ anymore. I kept in contact with colleagues in London who felt the same way I did and were interested in self-advocacy and together we set up one of the first self-advocacy conferences for BAME people in London, which is where I originally met the wonderful Jackie Downer – a true leader if ever there was one!
I was very lucky when I came to Wales in 1990 because I was quickly offered a (voluntary) role supporting a self-advocacy group in the Rhondda, and the rest is history.
[Prompts – how many members, where it met, what support was there, funding, its main aims, conferences, national and international. What reactions were there, how did the people who took part respond?
What were the main issues you talked about?stories about the early days more than welcome.]
My first paid role in self-advocacy was with Mid Glamorgan People First which I helped set up with the help of people with learning disabilities. Mid Glamorgan was made up of 6 areas, Bridgend, Rhondda, Cynon Valley, Taff Ely, Merthyr, and Rhymney Valley. We recruited 2 people from each area to sit on the People First group, as well as 2 people living in a local institution that was planning to close. We met in a variety of places, but mainly in a church hall in Pontypridd which was easy for most people to get to. I remember having to organise taxis for most people to get to meetings, as well as always picking up 4 people myself (from Bridgend, and from Hensol Hospital).
We had a small grant from Mid Glamorgan County Council. It paid for:
As the support worker, I used all my own equipment like computer and printer, as there was no money for it in the budget. Remember, this was in the days before email was the way most people communicated; we still sent letters!
The People First members really enjoyed the meetings and talked about everything from making their own decisions, what it’s like living in a hospital, what happens in day centres, and relationships. Our aim was just to give people a space to speak up about what was important to them.
In the early days, most of what we did was to explore issues like difference, labelling and discrimination: it was important for people to understand oppression if they wanted to challenge it. What was very clear in those days was that people didn’t realise they were oppressed until it was pointed out to them, partly because of them and others having low expectations of what they would achieve.
I was soon asked to sit on the local Strategy Planning Team as a ‘user’ representative. Of course, I said I couldn’t do that but would be happy to support an actual ‘user’ of services as a representative.
Mid Glamorgan People First went from strength to strength and we were soon involved in several planning meetings, delivering training sessions for staff, running conferences, and consultations about services.
The highlight of People First for most people was an annual, weeklong, residential self-advocacy conference held by the seaside in Porthcawl. These conferences involved about 50 people with learning disabilities, and we had guest speakers like Jackie Downer and Gary Bourlet. For many people, Jackie was the first black person they had ever had contact with, and I remember it opened a whole new (positive) debate about diversity and difference.
There were very few staff at our annual conferences which surprised a lot of people’s regular staff who couldn’t believe people could be that independent; given the chance many people went out for walks or for a drink together in the evenings, with or without support, and everybody survived! Of course, we made sure people were safe, but we regarded risks as important to help people grow and develop their self-advocacy skills. I will be forever grateful to the staff who worked shifts at those conferences, some of whom took annual leave to be volunteer support workers for us. I am particularly grateful to staff in the local authority who funded it from their ‘training’ budget.
The experience of People First taught me humility and to be forever grateful for what I have in my life. Suffering prejudice and discrimination for the way you look or behave doesn’t allow your confidence and self-esteem to grow. Being stopped from taking risks makes you fearful of any changes in your life. Being bullied and oppressed stops you trusting people. I am in awe of people who survive these experiences and still don’t give up on life.
Setting up People First in South Wales wasn’t of course without its critics.
From the beginning, there was no doubt that some professionals wanted people to have a voice but didn’t always want to hear what they had to say if it meant changing the way things had always been. This wasn’t necessarily because they didn’t want change, but people’s jobs didn’t allow for the kind of flexibility and creativity needed to deal with it.
Then there were the more traditional staff who thought they were already supporting self-advocacy but didn’t realise that was impossible in some of the institutional settings where people had to spend their time. They also found it a threat to the authority they had over people with learning disabilities.
We always taught that self-advocacy is having a voice, and People First is about having the opportunity to use it. Realising that professionals were also often in positions of powerlessness when it came to making changes, our People First members always tried to work with rather than against them, which would be counter productive. It is amazing how much confidence staff gained when they were able to work alongside people, rather than be ‘in charge’ of them.
In the mid 1990s local government reorganisation meant that the county of Mid Glamorgan was broken up into 4 separate Counties. This could have meant an end to our funding, but each new County agreed to give a percentage of the original funding to set up a self-advocacy group. This meant recruiting support workers for each new county, and the realisation that if we were here to stay, we needed to register as charities. My role changed into helping each new county get additional funding, recruit a worker, and register their self-advocacy group as a Charity. Twenty-five years later, they have all survived and are going strong.
After making sure the new county groups were strong enough to survive, when a job came up locally with Bridgend People First, I applied and got the job. I decided I didn’t want to be travelling all over South Wales anymore. When I turned 60 a few years ago, I tried to retire but keep getting drawn back into doing freelance work with self-advocacy groups and People First. I’m not sure if it is me or People First that won’t let go! However, I am determined that now my son works for People First Bridgend, I will step back and let his generation take some responsibility for putting this world to rights alongside people with learning disabilities.
People First gave me the chance to develop some long-lasting friendships with people with learning disabilities and prompted me to become an independent advocate for other people in the latter years of my career. To this day, I still socialise with some people that I consider friends for life. I have lived and breathed self-advocacy for 30 years and wouldn’t change it for the world; I feel I have been so lucky to have had such an exciting, challenging, meaningful career. I can only hope that I’ve had a positive impact on the lives of some of the people I have worked alongside.
Did it change my view of the world? Not really, just some of the people in it.
People are now definitely more outspoken than they were when I started working in self-advocacy. And if you look at people’s lives, they are much improved – people have more choices, are more involved in making their own decisions. But if you live somewhere like South Wales, transport is still a huge problem when it comes to going out and about, if and when you feel like it. Most of us can live quite spontaneously, do things on the spur of the moment, but it’s not like that for most people with learning disabilities; life requires a lot of planning and weighing up what might happen in certain situations.
Transport also has a huge impact on other areas of your life, such as the big issue no-one really wants to talk about - relationships. If the pandemic has taught us anything, it is how important personal relationships are to us all, and that includes people with learning disabilities; this is a huge challenge for People First.
Education, or lack of useful education, is still something that should also be on the People First agenda.
We now live in a digital world where everyone is vulnerable, and everything is changing all the time. This is another challenge for People First.
There are brave and courageous people with learning disabilities who, given the chance, can grow and develop the same as anyone else. But the biggest challenge is that there will always be a lot of inadequate people in power who feel the need to keep people with learning disabilities powerless to feel good about themselves. So, the biggest challenge facing self-advocacy and People First is survival.
The publisher is the Centre for Welfare Reform.
An Interview with Katrina Kurowski © Katrina Kurowski 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.
Jan Walmsley interviews Patrick Burke about his experience as a leader and an advocate in the self-advocacy movement.
Recollections of the early days of deinstitutionalisation and the emergence of self-advocacy by one of its pioneers.