Conversation: Wendy Perez and Simon Duffy
Simon Duffy is the Director of the Centre for Welfare Reform. In 2002 he wrote a book called Keys to Citizenship in which he described the principles and elements for providing good support for people with learning difficulties. However in the past few years he has been working with Wendy Perez, a woman with learning difficulties, to develop a better version of his original model.
Wendy and Simon have now published their updated 7 Keys to Citizenship model and are currently working on producing a new book - Citizenship for All. In this interview with Simon, Wendy explains how she began working with Simon and what she hopes to achieve.
Simon: When did you and I first meet?
Wendy: We first met at the British Library in 2003 because there was a job at Paradigm, the consultancy agency where you worked, and we had a meeting about me applying for the job. To cut a long story short, I got the job and we started working together.
Simon: Why did you want to work for Paradigm?
Wendy: I wanted to change the way people think about people with learning difficulties, and Paradigm was working in the way I thought was right. People who worked for Paradigm used to see people as people, and they saw me as a person, not as someone who just belonged to Serviceland.
Simon: Why do you think you were successful in getting the job?
Wendy: I am gobby - I speak my mind. Although sometimes this does get me in trouble with professionals. I’d already done a lot of relevant things. For example, I had worked for People First, the self-advocacy organisation; I had worked on accessible information projects; I had been a DJ. I don’t just talk about it I live it.
Simon: We worked together on New Partnerships, an early project to develop self-directed support in England. What do you remember about those early days?
Wendy: Sometimes professionals are afraid that if they lose their power their job will go too. Also families can be scared to speak up, especially if they fear that their family member might lose support by speaking out about what they really want. It was really important to get the person themselves present and support them to speak up. I do think my story helped, because I had always lived that way; I’d always been asked what do you want - and I’d been listened to, by my family and by others. I have always been out in mainstream society all my life.
Simon: What was the best thing about working at Paradigm?
Wendy: At Paradigm people believed in me and when I made suggestions people listened. I was one of them. In other jobs in the past sometimes people didn’t seem to listen.
Simon: When you joined Paradigm we were just publishing the first version of Keys to Citizenship. What did you think about that book?
I think the book was important. I think people should be in control of their own lives and their own support. It was based on real stories; it was not fiction.
Wendy: Why did you write that book?
Simon: I didn’t like the way services treated people and families. I thought people were being put in boxes, they were not being allowed to live great lives.
Wendy: Yes, don’t put people in boxes. People just assume that people can’t do things. You need to spend more time with people, listening and encouraging people. If people want to do something then you should automatically assume that they have a right to do that, and you should support them to do what they want. Just like everyone else. And when people need help don’t assume it needs to be paid support.
Simon: Also, I’d also worked with people and families to design individual supports where people got their own home, budget, assistance and could live a normal life in the way that was right for them. This stuff, to me, seems quite easy and logical, but I found families and professionals lacked basic information about how to do it. So the book was my attempt to share everything I’d learned about doing this practically.
Wendy: Really it shouldn’t be too difficult for people to do the right thing. Just flip it on its head and do what you would do for yourself. Everything doesn’t need to be special. For example, if you want to buy a house you go to a bank and get help to get a mortgage. You don’t assume you have to live in a care home.
Simon: The other thing was that I am a philosopher and I wonder why we do things the way we do, and I thought the idea of citizenship was a helpful goal for all of us. It may not be everyday speech, but I thought it was something everyone could get.
Wendy: This is exactly what I thought. People don’t need services; people don’t always need paid support. I think that citizenship is a good word to sum up what I think - people should live the way they want. I can’t live another way. Everyone questions my family and me because I made my own decisions, took risks and I am part of the community like anyone else. I can’t find out whether I can do something unless I take the risk. You learn by taking risks. So why can’t other people get the chance to learn this way? I have been making decisions about my life since I was small; but many people don’t get to make decisions about their lives.
Simon: Why did you ask me to do another version of Keys to Citizenship?
Wendy: It was difficult to ask you, because I worried about offending you. I had to get a lot of courage to do it. I had already started to write a lot of stuff about my life and one of my colleagues suggested turning it into a self-advocacy manual on the Keys to Citizenship. She encouraged me to get in touch.
Simon: But you also had some criticism of the original Keys to Citizenship didn’t you?
Wendy: Yes, it wasn’t very accessible. It wasn’t really written from the point of view of people with learning difficulties. It was about people, but not from people. The voice of people was missing.
Simon: That wasn’t the only criticism you had was it?
Wendy: There was a chapter missing - you had not written about sex. People will get abused unless they get education about sex; they will miss out on the chance to have relationships. I also think some of the words were too complicated, for example now instead of ‘self-determination’, we use ‘freedom’ and instead of ‘support’ we say ‘help’.
Simon: We’ve been writing the new book for a while, but hopefully it will be published soon, what do you hope it will achieve?
Wendy: Hopefully, it will mean that we don’t have to work so hard to change people’s views. People will read it and it will come automatically. We might still need to help people, but it will be a good start to have a book that lots of people, families and professionals can read for themselves.
The publisher is the Centre for Welfare Reform.
Improving the Keys to Citizenship © Wendy Perez and Simon Duffy 2017.
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.
intellectual disabilities, Keys to Citizenship, social care, Article