Transcript of interview with Simon Duffy for the Yearbook of the Finnish Service Foundation for People with an Intellectual Disability.
I am Simon Duffy, I run The Centre for Welfare Reform, which is based in Sheffield, England. For over 20 years I have worked with people with intellectual disabilities trying to help people be citizens and control their own lives and their own support.
I began my work with people who had just left institutions; their life was better, but it was still not good enough. Services and systems still seemed to have a lot of control over people. Too often people were not free, they were not connected and they were not able to share their gifts. They were in the community - but still segregated.
Citizenship for people with intellectual disabilities is exactly the same as citizenship for anyone else. That’s one of the good things about the idea of citizenship - citizenship is important for all of us.
At the heart of citizenship is a simple idea how we combine two important moral principles:
A society that is committed to citizenship is one that how to support all of its members to flourish as unique individuals.
Citizens all have equal rights, but there are also some very practical things that help us be citizens:
Of course some people do need a bit more help than others to take advantage of these things. Some people need help to communicate, to manage money or to join in their community. But everybody can do it.
Not only can people with intellectual disabilities achieve full citizens, I know many people who are better citizens than most people who do not have disabilities. They are connected to people, they make a real difference in their community, they have friends, families and partners.
Many people with no disability, people with well paid jobs, live empty lives and make no useful contribution to their community. Having a intellectual disability is no barrier to citizenship - in fact it is useful because it helps communities come together - but it does become a barrier if society lets prejudice and power get in the way.
First, you must believe. If you believe in yourself, and believe in other people then almost anything is possible. It is our decision to believe in the possibility of positive change that is the true beginning.
Second, you must take responsibility. There may be many barriers and problems, but if you do not take responsibility for yourself and your own decisions then you will drift - waiting for other people to take charge.
Third, you must gather power. Power and control is not private it is social - money helps, but much more important is working together with other people to bring about positive change.
It would be ideal if society was organised to make this easier, and we must all work to build a fairer society which makes it easier for people be full citizens. But ultimately any positive change begins inside ourselves.
Start with the individual, listen to them and make sure they have the power and resources necessary to build a new life for themselves outside the institution. The biggest barrier is the way in which the system begins by replacing the institution with new 'models' - may be a better models - but a model that will always fail in the end. We do not live in models.
Good design of support starts by giving people the power and information to make their own decisions. You must clarify what resources are available from government (a flexible individual budget is ideal) and what resources people have in their own lives. Everyone has gifts, relationships and assets and as you begin to focus in on real communities you will also find that each community creates opportunities that people with intellectual disabilities can use.
The first big threat is that society still sees support to people with intellectual disabilities as a financial cost - and then when money seems tight - people start trying to reduce this cost in ways which are damaging. We must see each human being for who they real are - a gift.
The second big threat is eugenics. Some people seem to prefer the idea that there be no people with intellectual disabilities in our world. Silently, by testing, abortion, neo-natal death, poor healthcare and institutionalisation those people who are different are being removed. And the more this happens the more likely it is that those who remain will also come under threat.
We know a lot more now about how to provide good support to ensure that we can move straight from the institution to full citizenship. Do not fall into the trap of believing that you must go through some long process of de-institutionalisation by developing large care homes, day centres and other services. It is quite possible, much more efficient and much more positive to move straight to citizenship. Several areas in Scotland have shown how well this can be done and I am sure Finland could do even better if it wanted to.
The publisher is The Centre for Welfare Reform with thanks to the Yearbook of the Finnish Service Foundation for People with an Intellectual Disability
Full Citizenship for People with Intellectual Disabilities © Simon Duffy 2012.
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.