This year is the 30th anniversary of the Open University’s Social History of Learning Disability Research Group (SHLD) and, as one of its founders and with our annual conference on the horizon, I want to reflect on its significance. The university’s professor of learning disability studies, Liz Tilley, who has chaired SHLD for 15 years, has written this article with me.
The group’s purpose was to pioneer what we might call inclusive history. What history there was in the early 1990s was from the perspective of psychiatry, special education or celebratory accounts of great men, organisations or institutions.
There was very little of the voices and memories of the people who lived through that history, though a start had been made with life stories like Nigel Hunt’s autobiography (1966), Joey Deacon’s story (1974), Bogdan and Taylor’s Inside Out (1982) and the university’s anthology Know Me As I Am (1990).
The SHLD set out to build on this inspiring work, and to do what oral history does best – to correct the official record and paint a more complex and nuanced picture.
From the outset, we had impetus from Mabel Cooper, a woman who had spent her early life in institutions, labelled an imbecile.
Cooper believed passionately that the best way to avoid a return to the grim days she had spent incarcerated is to remember them. She was assisted to write her life story by Dorothy Atkinson, co-founder of the SHLD, and this was published in our first book Forgotten Lives (1997).
Other books included Witnesses to Change (2005), testimonies from family members dating back to the Second World War, with touching and appalling accounts of parents being told to “put her away and have another child” – advice all the book’s contributors ignored.
Alongside books were annual inclusive conferences at the university campus in Milton Keynes.
Conference for all
Academics, campaigners, self-advocates, family members and advocates present in a way so nearly everyone can be included.
Most people rise to the challenges of speaking strictly to time, in plain English, with visual aids. Any who don’t are soon brought to heel by our chairs; these included Cooper herself until her death in 2013, and Ian Davies and Craig Hart.
We have yet to find ways to include people without speech as presenters, but no one can forget Johanna, a regular attender who struck up a relationship with Gloria Ferris, Cooper’s friend. Her body language clearly showed Johanna was an active audience member.
Inclusive research with people with learning disabilities is now regarded in many quarters as the default – or at least the gold standard researchers should aim towards.
It was not always so. Much of this work was pioneered in the 1990s and early 2000s within SHLD.
Through life history research and heritage projects, researchers with and without learning disabilities developed collaborative ways of working that informed many of the participatory methods that now underpin so much social science and humanities research in the learning disability field.
SHLD has always been a network – an international one – and it has been a joy to watch the seeds of inclusive research in SHLD set down roots in a range of countries over the past 30 years.
This has always been a two-way process, with SHLD providing a home for researchers in learning disability from all walks of life to share ideas, problem solve and seek support when trying to push research boundaries across a range of disciplines.
Many lifelong friendships have been forged, uniting people through scholarship, activism and care.
At our 2023 conference – after a long period apart following the pandemic – we reflected on SHLD as a space for emotional connection and a sense of belonging, developed over three decades of collaboration.
We look forward to building on this rich history, looking towards the next chapter of SHLD.
