Creating a living and inclusive archive of learning disability history
Research type
Research Study
Full title
Developing a co-produced, digital, and living archive of learning disability history: An exploration of ethics, ownership and new connectivities
IRAS ID
212410
Contact name
Elizabeth (Liz) Tilley
Contact email
Sponsor organisation
Faculty of Health and Social Care, Open University
Duration of Study in the UK
3 years, 3 months, days
Research summary
Our AHRC funded project aims to co-develop a living and inclusive archive of learning disability history. The project has two key strands. The first involves the co-designing and testing of an accessible prototype digital archive of learning disability history. This online archive will enable people with learning disabilities and other stakeholders to both access the history of learning disability (including the history of services/institutions as well as personal histories), to access resources to support the recording of history and to actively contribute to and shape that history, through the depositing of their own stories, memories and digital artefacts. The second strand involves working with the wider heritage sector (specifically archivists across England) to explore how local archives can be more open and accessible to people with learning disabilities as users and potential depositors. Thus both strands of our project are focused on how people with learning disabilities can engage with their cultural history and heritage more easily and effectively (i.e. how they can ‘find stuff out’) and how they can be enabled to tell, share and deposit their own stories and artefacts, to ensure the lived experiences of people with learning disabilities today are captured and represented in the historical record (i.e. how they can ‘be part of history’).
Alongside these two key strands, we are investigating the conceptual, ethical and technical questions of how a co-produced, distributed, inclusive and ‘living’ archive of learning disability history can be developed and sustained. To do this the project is drawing on pioneering participatory research methodologies; inclusive and emancipatory approaches to learning disability history; research insights into user-generated and participatory engagement in heritage contexts; and recent developments in digital heritage and digital accessibility.
Our final aim, in keeping with Human Rights (Joint Committee on Human Rights, 2008) and Equalities legislation (The Equalities Act, 2010), is to ensure a living archive of learning disability history is an inclusive one, and that the experiences and stories of people with the highest and most complex needs are not discriminated against (Foundation of People with Learning Disabilities, 2011) excluded or forgotten. Consultation with stakeholders in phase 1 of our research has identified existing barriers to inclusion and strongly emphasised the need for us to support the inclusion of people with high support needs in our archive. This is why we are applying for approval for Phase 2 of our project to include adults who may lack capacity* to participate in the research process in our project. We want to draw upon best practice to fully explore all possibilities to enable people with complex needs to participate in archives.
*The phrase adults who lack capacity encompasses adults whose capacity may be borderline. The proposed research will be undertaken in England and comply with Mental Capacity Act (2005) and associated Codes of practice and research guidance.
REC name
Social Care REC
REC reference
16/IEC08/0030
Date of REC Opinion
8 Sep 2016
REC opinion
Favourable Opinion