It has been a source of great pride that I was associated with the first major initiative to tell people’s stories in their own words.
The 1990 anthology Know Me As I Am contains more than 200 items – prose, poetry and art – created by people with learning difficulties.
My contribution was to organise travel around the UK so the editors, Dorothy Atkinson and Fiona Williams, could meet the contributors.
Now, more than 30 years later, I am co-editing another book created by self-advocates and their allies, Stories of Citizenship.
This project, with Open University lecturer Liz Tilly and social enterprise Building Bridges, draws attention to the United Nations Convention on the Rights of People with Disabilities.
This document, which the UK has signed up to, is a statement of rights – what people are entitled to expect from the government, legal systems, social and health services and fellow citizens. However, people do not seem to know about it.
We have collected stories about how people are realising the rights promised in the convention.
Although a book is not the most accessible of formats – it will not be in easy read but is in plain English – over 80 contributors will have their names in print.
People used different ways to tell the stories. Some wrote their own accounts while others worked with family members, supporters or friends to record what they wanted to say, then approved the contribution. Sometimes, the editors visited groups to record what people wanted to say.
In some cases, we invited supporters to write their story alongside the self-advocates’ contributions.
Getting the language right
It has been less easy to collect stories from people with more profound learning disabilities but, thanks to some creative work by supporters, these are in there too.
As editors, we have sometimes asked people to rewrite content that had the name of a self-advocate attached to it but did not ring true because of the language used. At the other end of the spectrum, some contributions came in exactly as people said them. We asked for these to be smoothed to make them easier to read.
Some contributions did not show how a difference had been made. Meeting your MP is great but, unless it leads to positive change, do we need to know about it?
There were also challenges in getting contributions that address the different articles in the convention. We had lots on ways to get interesting paid jobs (article 27) and about learning (article 24). Finding positive stories about the criminal justice system, however, was more difficult (article 13), despite excellent work by KeyRing’s Working for Justice group.
We had lots on ways to get interesting paid jobs and learning. Finding stories about good treatment in the criminal justice system was more difficult
Similarly, democratic rights (article 29) can be difficult to realise. The work of Brighton and Hove Speak Out’s Being Heard in Government group is inspiring, but there is nothing like enough of this.
It was striking how few contributions acknowledge support from formal services. Support has come from family members, universities or community groups. Several people said it was necessary to escape the service world and enter the real world to find people who get inclusion.
Why does it matter that we hear good news stories? It is easy to become despondent. This book will show that there are ways in which people can get better lives. It takes energy, courage, determination and commitment – and maybe even luck.
Transport for London has for decades worked with disabled people to make public transport more accessible – why can’t everyone do it? My Life My Choice’s Travel Buddy scheme, which supports independent travel, provides paid work for self-advocates and saves money as it no longer needs to pay for taxis.
The books illustrate what can be achieved as well as the barriers that need to come down to make citizenship achievable for all.
Stories of Citizenship, edited by Liz Tilly and Jan Walmsley, will be published by Palgrave MacMillan early next year
