The Peter and Friends series of books is a unique, inclusive approach to publishing the experiences of people with learning disabilities and their allies.
Along with myself, the digital project editors include Peter Cronin of Lewisham Speaking Up and Eddie Chaplin, professor of mental health in neurodevelopmental conditions at London South Bank University (LSBU).
The project was founded in April 2019 by self-advocate Peter Cronin in response to the pandemic as a platform where everybody, regardless of their status, can be heard.
We believe that everyone has experiences and a story to share. Most of all, we believe that people with learning disabilities, their families, carers, advocates, educators, the charity sector and heath/social care staff can be published in the same place.
True co-production between people with learning disabilities and their allies is the sharing of power.
The first free to download book, released in October 2019, is called Peter and Friends Talk About Covid.
The pandemic was new and no one was ready for how it changed our lives. Peter Cronin lives independently and was lonely, worried and anxious. He had sleepless nights and had nobody to talk to about Covid.
He developed a cough and thought he had the virus, but his Covid test was negative. After this, he thought: “How are other people with learning disabilities coping during Covid?”
We started to ask people for their pandemic stories. We used Twitter (now X), Facebook, LinkedIn, emails and advocacy networks. We were astonished at the response; we received stories from 12 countries across five continents.
Global reach
The book was launched at a virtual conference attended by over 300 people from all over the world with powerful contributions including from Liberal Democrat politician Sir Norman Lamb and experts by experience from Spain.
The second book, Peter and Friends Talk About Mental Health, was published in October 2020. The book concentrated on Europe, with stories by experience from experts by experience, families and carers and organisations.
It also contained easy read information about mental health conditions, how to stay mentally well and how to get help. But what we are really proud of is that it explained different innovative projects across Europe.
Our third book, Peter And Friends Talk About Their Experience Through Their Lifetime will be published late this year. We will be looking at the experiences of people with learning disabilities in their 20s up to their 80s.
Then we will compare similarities and differences in life experience. For example, younger people will never have experienced large, long-stay institutions but people who are in their 60s or older may have.
Part of the third book includes research. We aim to make a historical record of the past 80 years as experienced by people with a learning disability – in their own words. It will cover four to five people in every decade of life and we aim to publish the research in academic journals.
People can send us their stories that they have written themselves or with support. They can also send pictures as part of their story and family members of people that need support can be included, so we reach a wide range of people.
Everybody we interview we will have to give their consent under the policy of LSBU. The project is undergoing ethical scrutiny by LSBU; once it is approved, we will share more information, so people can decide if they want to participate.
We are really looking forward to this next stage of Peter and Friends and listening to everyone’s stories.
If you would like to be involved in this project, please email: steve.hardy@nhs.net
Download free copies of books 1 and 2
Steve Hardy is a learning disability nurse at Oxleas NHS Foundation Trust
