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The Fight for Equal Citizenship

Author: Wendy Perez

Wendy Perez is co-author of the Seven Keys to Citizenship and leading self-advocate. Here she describes the ongoing work to try and help people with learning difficulties take their rightful place in society as equal citizens. Here she reflects on some of the lessons she's learned from the fight for citizenship and civil rights for people with learning difficulties.

Between 2003 and 2009 I worked as a consultant in a consultancy and training organisation called Paradigm. I was the first person with learning difficulties in the UK to work as a consultant. Our message was simple:

  • Everyone is entitled to a real life.
  • Everyone has the right to be a citizen.
  • Everyone has the right to do what they want with their own life.

This might seem obvious. But up until the 1980s people with learning difficulties were largely supported in hospitals. This was institutional care, with specialised services and people contained in wards and rooms, often doing nothing and with no chance to speak out.

Families were not given support, and often they were encouraged to give away their children to the institution. Most families tried to take care of their children; but if they could not cope the hospital was the only option they were given.

Some people lived their whole life in the institution. But from the 1980s onwards society began to realise that people could live in the community, their own flats or in groups; so they began to knock the hospitals down. However even when we make some progress things quickly go backwards. Often, after the old buildings were knocked down, new buildings were put on the same site, with flats, shops, post offices and other ordinary-looking things. So people were still locked away, even if things looked more like a community.

This is not what we believe in, we believe in full citizenship, we want to stop this happening all the time. We want the person to have the power.

That is why Paradigm was created and why many of us came together, to try and challenge this very limited version of community life. That is why we started the work we are doing; because many people with learning difficulties, their families and their allies realised that these new systems were not supporting real citizenship and were not creating real communities.

We did the job because we were sick of what was happening and sick of what had happened to people in the institutions. We were sick of going to places seeing things not properly set up, where people were not asked what they wanted and not told their rights and what they were entitled to.

There were lots of policies and everybody used the right words, but real progress seemed to be very slow. Many professionals, social workers and managers, seemed to be stuck in a system that didn’t really help make things better:

  • People were not treated as people - just as numbers
  • People were not listened to
  • Professionals only provided what the system allowed
  • The system was organised to make things easier for there system, not for people
  • Plans were made and then forgotten
  • Abuse continued, as we still see today
  • People got angry, and were then punished and moved away from home
  • The system only seemed to care about the money
  • They didn't check whether people were happy, they just checked the money
  • People remained stuck in services
  • Reports were written but nothing changed

Working with people and families

People and families didn't have any power or control and when there was a crisis people were taken away from their family, and then things often got much worse. So we wanted to help people take their power back. We wanted to help them to do that and to support them to have a real life like anyone else. We wanted things to change and to help people change their life.

The most important thing when working with people and families was to try and help people see:

  • What citizenship really means
  • Everybody can be part of the community, with the right help
  • The community creates lots of opportunities, if you think out of the box
  • It is possible to help someone get what they really need
  • People, families and professionals could work in partnership together

For many this new way of thinking was a hard transition, because some people had been 5 years old when they went into those institutions and they were leaving more than 50 years later. It was a whole new world for them to get used to and a whole new way of living.

To make the transition easier and help people change how they think we used many different approaches:

  • Exercises and training 
  • Person-centred planning
  • Thinking about important routines in the person's life
  • Creating a positive weekly timetable
  • Thinking about what they would do in a normal life situation, not in services
  • Thinking creatively about how to solve problems, not relying on money all the time
  • Sharing stories and good examples
  • Helping people solve practical problems together, like finding the right house

There is no standard approach. Often you have to meet the people first to understand how to help move things on. You have to think on your feet.

Looking back I’d say that it worked, but only at the time. Today I’m worried that now things have gone backwards. I think many service providers today are still stuck in a rut, still providing institutional services. Many managers only did the training when government policy (Valuing People) said they should and when there was money around to pay fo it. A lot of it seemed to be just to make them look good. This is tokenism and it didn't change their thinking. When Value People finished so did their commitment.

They would never accept this in their own lives, so why did they accept it when they were working with people and families?

In the end I’d say the most powerful thing was to work with people and families directly. We helped people think about the future and gave people the tools to get control their back over their life - even when they couldn’t speak.

It was very rewarding to see the person doing what they wanted and having the life they wanted and helping them make the changes they needed.

I am not saying that we know all the answers, but we think that people with learning difficulties should be able to live a full life like everyone else - this is what we call citizenship.

The publisher is the Centre for Welfare Reform.

The Fight for Equal Citizenship © Wendy Perez 2018.

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.