Using open research to counter stigmatising historical narratives

For 30 years, The Open University’s (OU) Social History of Learning Disabilities (SHLD) research group has opened up the academy to people with learning disabilities, enabling them to tell their stories, conduct research alongside academics on an equal footing, while supporting people to have a voice in their own history. In the early 1990s you would have been hard pressed to find much in the history books about the lives of people with learning disabilities, and what did exist tended to focus on developments in psychiatry, special education and the rise (and fall) of institutions. What was known about the lives of learning disabled people emerged through institutional and medical records – stigmatising case notes which only ever gave a partial view. Bar a few exceptions, it was almost impossible to identify accounts about people’s lives as told through their own words. The SHLD group was founded to address this gap in the historical record, countering a dominant historical narrative that positioned learning disabled people as a social ‘problem’ that needed to be ‘solved’.

Recovering people’s stories through inclusive history

From the outset it was the intention of SHLD to recover people’s stories and use this heritage for advocacy and social change. Driven by a commitment to ‘inclusive history’, the SHLD group pioneered methods and approaches to enable individuals to document and share their experiences of the past. It brought together people with learning disabilities and their organisations, family members and practitioners, with academics from a range of disciplines to co-develop a programme of research and public engagement activities. The group also became known for convening its international inclusive conferences at the OU’s campus in Milton Keynes - events that are still recognised as being unique in providing an accessible and welcoming space for open research, networking and belonging. As a result, SHLD has created opportunities for personal and professional development, while fostering a shared sense of collective history amongst people with learning disabilities. This has been critical in helping people to understand that the challenges they may have faced in life are not a result of their own personal failings (as many have been led to believe), but are instead the consequences of disabling systems and structures that have deep historical roots.

Continuing to make research more open to all

Since the 1990s the SHLD group has retained a key focus on documenting, preserving and sharing the heritage of people with learning disabilities, while leading or contributing to a number of research projects focused on people’s contemporary experiences. The research is always inclusive and participatory in design, seeking ever more creative, ethical and equitable mechanisms to enable learning disabled people to take ownership of the research agenda. Our research is also infused with the ‘long view’, seeking to understand the historical underpinnings of the health and social inequalities that so many people with learning disabilities continue to endure. The group’s influence, external collaborations and broader remit will be reflected in its establishment as the forthcoming Centre for Society, History and Learning Disabilities launches in 2026 at The Open University. Reflecting the group’s inclusive approach over 30 years, the new Centre will be co-led with people with learning disabilities and will have a critical focus on how we can continue to push the boundaries in terms of making research – and the wider academy - inclusive, accessible and open to all.