Developing a co-produced, digital, and living archive of learning disability history: An exploration of ethics, ownership and new connectivities

Lead Research Organisation: Open University
Department Name: Faculty of Wellbg, Educ & Lang Sci(WELS)

Abstract

People with learning disabilities remain one of the most excluded groups in the UK. Researchers have attempted to address this entrenched exclusion by engaging with the voices and experiences of learning disabled people, in particular by collecting narratives relating to their personal and community histories. Yet such research has increasingly been shaped by people with learning disabilities themselves, as self-advocates and as researchers, who have developed a substantial critique of how academic knowledge about 'learning disability' is produced. Central to this has been the principle of 'nothing about us without us', leading to an increasing number of 'inclusive research' projects where people with learning disabilities have led or co-produced their own research. Drawing on personal testimony and storytelling, history and heritage has been a key focus for the development of inclusive research.

This project is informed by both these criticisms of academic research and the interest in history and heritage as a means of supporting self-advocacy and social and political change. The project uses sustained participatory research methodology - and will be driven by a core research team comprising researchers with and without learning disabilities - to investigate how a co-produced, distributed and 'living' archive of learning disability history can be developed and sustained, drawing on recent developments in digital heritage and digital accessibility.

During the project, a working prototype archive will be developed, subjected to a rigorous and iterative cycle of testing and redesign, alongside people with learning disabilities and other key stakeholders. The process of producing this prototype archive will enable the team to address a series of conceptual, ethical, legal and technological research questions; set out a sustainability plan for the long-term viability of a learning disability digital archive; and compile training resources and guidance for stakeholders in health and social care, education, and museums, libraries and archives to support people with learning disabilities to become actively involved in collating and recording their history.

The inclusive research team will work collaboratively with self-advocates (Carlisle People First and the Uniting Friends, London) to explore the issues and potentials of individuals and groups digitalizing and archiving their own histories. In addition the implications of adding two key existing archives to the digital archive will be explored through the Maureen Oswin archive (The Open University) and the Mencap 16mm film collection (University of East London).

The technical development of the archive will be led by the Rix Centre and informed by their established approach to inclusive digital self-advocacy tools. Drawing in consultants with expertise in working with developers and designers, the technical development will be achieved through a series of inclusive and iterative workshops, sandpit sessions and user-testing sessions. The project will conclude with the launch of a sustainable digital and living archive and with suitable and co-designed training resources aimed at people with learning disabilities, the people who support them and other key stakeholders.

The whole project's process itself will be actively engaged with and the research team will generate ethnographic observations; interviews and conduct focus groups with key stakeholders in the fields of digital technology, heritage, and health and social care policy and practice. As a result the project will lead to a range of academic and practice-orientated insights in the form of academic papers, sector-focused publications, freely available video blogs which will make a substantial contribution to future practice in both social care and heritage sector contexts and to academic research at the intersection of disability studies, social care, museums and heritage studies and inclusive new media.

Planned Impact

The impactful nature of this research is built into its design. The project design is based on a defined set of needs identified through our RTR-funded scoping study. The process of the research actively builds in co-design and co-production with a range of individuals, groups and stakeholders from its very inception. We envisage four key pathways to sustained and long term impact: people with learning disabilities and the people who support them; museums, libraries, archives and community heritage contexts; health and social care policy and practice and inclusive and accessible new media design.

To ensure the archive is relevant, exciting and usable for people with learning disabilities and people who support with people with learning disabilities we will co-develop the very concept of the archive and address emerging issues with two self-advocacy groups, Uniting Friends and the Carlisle People First Research Team. We will also actively extend the numbers of people with learning disabilities involved - and ensure those with different and more complex needs are involved - through our iterative phases of user-testing within each design phase. We will actively engage professionals and key agencies throughout so our end users needs and interests are at the heart of the project.

Our scoping study identified specific issues which limited museums, libraries and archives engagement with people with learning disabilities, specifically the legal and ethical dimensions of informed consent and the legal and ethical dimensions of this work. We will tackle this barrier to impact head on and engage sector professionals throughout with our learning disabled co-researchers to understand concerns, draw in and interpret relevant legislation and develop easy-to-use and relevant guidelines.

Our scoping study identified increasing interest in health and social care policy and practice round life histories as part of person-centred planning. We will involve those developing policy and practice in this area from the beginning with the aim of the archive linking to, and enhancing, social care planning processes.

Finally, the project will actively engage with key players internationally in New Media accessibility and self-advocacy, impact will be secured through the inclusive sandpit process of involving a range of developers and designs co-designing with people with learning disabilities and ultimately taking an open source approach (Creative Commons Attribution-NonCommercial-ShareAlike) to the software and infrastructure we develop.

Publications

10 25 50
 
Description A key finding of our research - generated through numerous workshops and sandpit sessions with colleagues across different disciplines and sectors - was that people with learning disabilities valued opportunities to both tell and share their stories, for both political and personal change. However, participants also articulated the importance of retaining control over HOW they shared their story (when, for how long, with whom, in what form, choosing which labels to use). For the archive to be truly inclusive, it needed to develop an approach to archival practice which held both the public and the relational political traditions in dialogue. Both political traditions have a history of being very effectively expressed in the learning disability self-advocacy movement as speaking up and being heard and of arguing for services to start with the individual by being more 'person-centered'. The task of our archive was to respond to the data emerging through our discussions, and to design a system that was not only accessible, but that could respond flexibly to individual people's needs, while enabling the wider narratives of learning disability history to be captured and catalogued. The prototype learning disability archive therefore gives users options to deposit in very personalised ways, while also providing opportunities for people to connect their stories and experiences through a safe and secure networking system.

Our research demonstrated that a key barrier to people with learning disabilities' participation in heritage at the point of sharing and depositing in archives, was linked to ethical and legal concerns linked to the Mental Capacity Act 2005 (England and Wales). The MCA is the legislative framework governing decisions for people who may lack capacity 'because of an impairment of, or a disturbance in the functioning of, the mind or brain' (MCA 2005, section 2 (1)). More specifically, there were concerns about how best to maximize a person's capacity to understand what it might mean to deposit one's materials in an archive (either the prototype online archive, or with their local record offices) to ensure people could effectively give consent. In addition, there was much confusion - amongst families, health and social care providers and archivists - regarding how to include potential deposits from individuals with high support needs, who may not have capacity to give informed consent by themselves to the decision to share their materials and story in an archive.

Under the Mental Capacity Act, if a person is judged not to have the capacity to consent to a decision, then a substitute decision is made by those that know the person in what must be their 'best interests'. The Act itself provides little guidance on the extent to which questions of 'best interest' can be aligned to questions of 'public interest' with the exception of research. This was a key barrier to people's inclusion in archives, as our research showed that families, care providers and archivists would be unwilling to risk making a best interest decision in relation to archive depositing, unless legal clarification could be achieved. In light of this, the research team worked closely with one woman with profound and multiple learning disabilities and her circle of support to document a 'decision-making pathway', concerned specifically with the decision to deposit artefacts about the woman's life in her local archive. This research provided the basis of instructions to Chambers, to seek clarification on the question of whether 'best interests' could be viewed more broadly to encompass 'public interest' (for example social and political change). The legal advice we received clarified that the case law has developed to include 'altruistic sentiments and concern for others', including a concern for other people in the future. This legal advice, coupled with the decision-making pathway we prepared, now formally paves the way for the inclusion of deposits from people with high support needs in archives. In addition to the pathway, the research team also designed a set of proformas and guidance on the MCA and archives, which have been approved by barristers specialising in the MCA.
Exploitation Route The prototype Inclusive Archive is now available for people to use, and a number of individuals and organisations have begun depositing in it. Our follow up plans include seeking funding and a suitable infrastructure to move the prototype to a full-scale online archive, drawing on the findings generated through our research. In this way, we anticipate individuals, families and organisations will engage with and grow the archive over time, enabling a more comprehensive and 'bottom up' picture of learning disability history to emerge. In addition, there has been much interest in the decision-making pathway we developed, and our work on the intersection between heritage, archives and the Mental Capacity Act England and Wales (2005). We are now seeking funding to develop an online resource comprising the pathway, proformas, guidance and broader research findings, to enable more people to use the pathway to support the inclusion of people with high support needs in archives. From feedback we have received from numerous engagement activities, we also anticipate that this pathway will be used to support story-sharing amongst people with high support needs more broadly. This is because our research findings provide families and care services with the knowledge, skills and legal certainty to use the MCA framework to support good decision-making around the telling and sharing of stories - either for the purposes of public benefit or personal benefit. Discussions with the archive sector both during and after the project, indicate that there is an appetite for archivist training on issues related to access and participation of people with learning disabilities in heritage. We are now seeking funding to embark on a programme of work to collaborate more closely with the archive sector in order to ensure that our findings reach beyond the online Inclusive Archive, and extend into archival practice at the national and local level. Finally, our research demonstrates the clear benefits of researching inclusively. The core project team comprised paid researchers both with and without learning disabilities, and involved people with learning disabilities in the research design in a multiplicity of ways. We would not have generated the findings we did had we not researched in this way. As we publish on our methodology, we hope that this approach will enable others to consider researching collaboratively and inclusively.
Sectors Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Healthcare,Culture, Heritage, Museums and Collections

URL http://www.inclusivearchiveproject.org
 
Description The findings are beginning to develop impact in a number of ways. First, individuals and organisations are now depositing stories and artefacts on the online Inclusive Archive, enabling the creation of a more inclusive and user-generated narrative of learning disability history to emerge. Second, the archive sector is engaging with our findings in relation to the Mental Capacity Act, and we have been approached by a number of archivists to co-design and facilitate training and support for archivists in the field of learning disability, capacity and consent. We are seeking follow-on-funding to develop this work further, in collaboration with The National Archives and The London Metropolitan Archives. In addition, the London Metropolitan Archives - following engagement with our project - have decided to apply for funding to develop a significant programme of work to facilitate better access to - and participation in - local heritage by people with learning disabilities. Third, we are in discussions with the Royal Mencap Society to create a consortium to develop a fully funded and sustainable online archive of learning history, based on the research findings from this grant. Fourth, we are liaising with care providers, families and advocacy organisations to ascertain how they can best utilise the decision-making pathway and accompanying resources to enable good decision-making processes around story-sharing and archive depositing for people with high support needs. We are seeking follow-on-funding to enable us to work with a number of new health and social care settings to raise awareness of the research findings, and to support different organisations to use the project resources to facilitate inclusive story-sharing and archive depositing. Finally, we have engaged with the National Mental Capacity Act Forum (convened by the Social Care Institute for Excellent and chaired by Baroness Finlay of Llandaff), which aims to improve implementation of the MCA across a wide range of fields. We are exploring plans to work with the Forum to raise awareness of our decision-making pathway and associated processes and guidance, which we believe can be applied to a wide range of complex decisions beyond archive depositing.
First Year Of Impact 2017
Sector Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Healthcare,Culture, Heritage, Museums and Collections
Impact Types Cultural,Societal,Policy & public services

 
Description 'Making a model living archive of learning disability history' for Social History of Learning Disability conference, July 2015, Milton Keynes 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Presentation to raise awareness of the archive project and our inclusive methods. Specifically targeted towards engaging with people with learning disabilities and their supporters.
Year(s) Of Engagement Activity 2015
 
Description 'What does an inclusive archive look like and how does it work?', Pararchive Communities Conference: Storytelling and the Digital Archive Conference at the University of Leeds 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Opportunity to share emerging findings and our methodologies with people in the heritage/archives sector, with a view to securing interest from new stakeholders. This has resulted specifically in making a connection with Monash University, linked to work they are doing with records of care leavers. Colleagues from Monash have since asked us to contribute an article to the International Journal of Heritage Studies special issue on participatory archives.
Year(s) Of Engagement Activity 2015
URL http://pararchive.com/conference/
 
Description 'What is an archive?' sandpit, October 2015, Leeds 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Sandpit to explore and unpick fundamental principles of archives in an inclusive way, to understand better how archives may need to adapt to meet the needs of people with learning disabilities. People focus on notions on time and space, and critiquing archiving as 'forever' and 'for everyone'. Begins our work on archive binaries.
Year(s) Of Engagement Activity 2015
 
Description Between the personal and the public: co-designing an inclusive archive of learning disability history. Social History of Learning Disability Conference, UK. July 2017. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation and workshop exploring the development of the inclusive archive of learning disability history. Specific focus on key legal and ethical research findings regarding capacity and consent, and the implications for sharing stories and personal histories in public.
Year(s) Of Engagement Activity 2017
 
Description Building and sustaining an inclusive team: achievements, challenges and lessons learned 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation to academics and students in the Norwegian Inclusive Research Network.
Year(s) Of Engagement Activity 2018
 
Description Consent Sandpit 1, Leeds 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Sandpit to begin our strand of research on consent; namely how archives can be as inclusive as possible, and enable those with the highest support needs to be involved. This first sandpit brought together people with learning disabilities and their supporters, along with archivists, and practitioners in health and social care, to explore barriers, and to create a path of 'where we want to get to'. This will be followed up by a second consent sandpit in March 2016.
Year(s) Of Engagement Activity 2015
 
Description Consent sandpit 2: London Met Archives, March 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Primarily an opportunity to work with archivists and legal experts to address key barriers to the participation of people with high support needs in archiving (emerging from consent sandpit 1).
Year(s) Of Engagement Activity 2016
 
Description Do not forget about me: facilitating the inclusion of people with high support needs in archives. Presentation given to the London Metropolitan Archives 'Taking Stock' conference, on disability history. November 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation given about the inclusive archive project's development of a legally compliant pathway for depositing in archives by people may who lack capacity to consent.
Year(s) Of Engagement Activity 2017
 
Description Exploring the social history of learning disability: Presentation given to the Norwegian Network on Inclusive Research, VID University, Stavanger, Norway. November 2017. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Presentation given to the Network focused on the inclusive archive of learning disability project's inclusive methods, with an exploration of co-research in history, heritage and archives.
Year(s) Of Engagement Activity 2017
 
Description From left out to leading: Researching and Sharing the History of Learning Disability, presentation at BRAVE POOR (AND INVISIBLE): GATEKEEPERS OF PAST AND FUTURE CITIES conference. Bristol, October 2017. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Presentation about the inclusive archive of learning disability given at a symposium that brought together two major national disability projects, Disability and Community: Dis/engagement, Dis/enfranchisement, Dis/parity and Dissent (the D4D project) and History of Place. This event exposed and explored the often absent voices of disabled people in our collective history as well as our future planning.
Year(s) Of Engagement Activity 2017
 
Description Launch of education resources on the history of learning disability, House of Parliament, 15 November 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact Launch of our education resources for schools and colleges on the history of learning disability. Guest speakers included the Shadow Secretary for Education and General Secretary of the NUT. Schools are beginning to use the resources and we hope to secure funding for a formal evaluation in the near future.
Year(s) Of Engagement Activity 2016
URL http://www.open.ac.uk/health-and-social-care/research/shld/education-resources
 
Description Presentation at the annual Archives and Records Association (ARA) conference: The Inclusive Archive of Learning Disability History Project - A consent pathway for depositing in local archives. August 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation given to archivists and heritage practitioners regarding the project's development of a 'consent pathway' for depositing in local archives. The presentation reported on research conducted by the project team - in collaboration with The Keep Archive in Sussex - to enable a woman with complex learning disabilities to deposit materials in her local record office through the process of legally compliant best interest decision (Mental Capacity Act 2005).
Year(s) Of Engagement Activity 2017
 
Description Remembering the past to inform the future, Workshop delivered to students at the Kathi-Lampert School of Social Care, Gotzis, Austria, December 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Undergraduate students
Results and Impact We ran workshops covering the following:
- the importance of sharing stories about the history of learning disability in the public domain. Why is it important for people with learning disabilities' history to be acknowledged and represented?
- ways of involving learning disabled people in the capturing and sharing of personal and collective stories online, using multi-media tools like wikis.

In addition, we gave a speech at the School's 25th anniversary celebrations, focusing on the importance of historical perspectives in social care training, and the inclusion of people with learning disabilities in teaching and research.
Year(s) Of Engagement Activity 2016
URL http://www.kathi-lampert-schule.at/home/
 
Description Technical sandpit 1: Introducing the archive 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact First major project sandpit to 'launch' the research: brought together 50 people including people with learning disabilities, archivists, inclusive design technologists, health and social care service providers, historians.
Year(s) Of Engagement Activity 2015
 
Description Technical sandpits 2 and 3 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Follow up technical sandpits, to engage people with learning disabilities and industry developers on the online component of the project. Specifically we reflected on how people's understandings of time and space (who they want to share with and for how long) impact on design features for a digital archive.
Year(s) Of Engagement Activity 2015
 
Description The Living Archive of Learning Disability History, Archives and Records Association Conference 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation exploring the implications of the Mental Capacity Act for archives, exploring the intersection between capacity, consent and heritage. Explication of the impact for our co-produced digital archive of learning disability history, but also the implications for the wider archives sector.
Year(s) Of Engagement Activity 2016
 
Description The Living Archive of Learning Disability, at Theorising Normalcy and the Mundane, Research Centre for Social Change, Manchester Metropolitan University 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation highlighting how we are beginning to conceptualise the tension in archives between the need to make stories public (to address systemic marginalisation of specific groups from collective history) while enabling people to retain control over their narratives. Furthermore, in our project this requires consideration of how these logics are played out within the framework of capacity legislation.
Year(s) Of Engagement Activity 2016
 
Description Today's experiences are tomorrow's history: Why an archive of learning disability is important to people's lives today 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact Workshop at the Social History of Learning Disability Research Conference, Milton Keynes, 7th July 2016. Reflections on using multi-media to capture history amongst people with learning disabilities, and showcasing our co-produced digital archive. Following the workshop we were invited to run workshops at the Kathi-Lampert School for Social Care in Austria, focused on the importance of historical perspectives in social care training, and integrating multi-media advocacy in services.
Year(s) Of Engagement Activity 2016
 
Description Using mixed media to teach people with learning disabilities about the history of institutions. London Metropolitan Archives conference. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation aimed primarily to raise awareness of our project amongst archivists and the wider heritage sector. It resulted in us securing interest and engagement with new people, and a follow up event at the LMA about our project.
Year(s) Of Engagement Activity 2015