Enabling People with Profound and Multiple Learning Disabilities to Belong in Public and Community Archive Collections

Tilley, Elizabeth; Ledger, Susan; Haas, Catherine de

doi:10.4324/9780429260711-16

Cited by 6 publications

(8 citation statements)

References 5 publications

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“…We acknowledge that this is a challenge. There are structural (practical, methodological and ethical) (Tilley et al 2020) and conceptual barriers to the inclusion of people with profound disabilities, even as research participants; the ethics procedures designed to protect vulnerable people are increasingly regulatory, often resulting in the exclusion of people with profound disabilities (Kellett and Nind 2001). Moving beyond inclusion as participants, as people have sought to firm up the structures that govern inclusive research to make it fundable, it has become less flexible; this systematically excludes people who cannot meet its requirements (Jones et al 2020).…”

Section: Why People With Profound Intellectual Disabilities Are Left ...mentioning

confidence: 99%

Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities

et al. 2022

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Positive developments in inclusion in line with ‘Nothing about us without us’ have rarely extended to people with profound intellectual disabilities. Advances in inclusive research are in danger of leaving this group (and their families and allies) on the outside, with researchers relying on proxies at best, or more often omitting this group as ‘too difficult’ to include in the research process at all. This paper argues that finding a way for people with profound intellectual disabilities to belong in inclusive research is important. Using examples, small stories and photographs, it explores and illustrates potential ways to research with and alongside those with profound intellectual disabilities that celebrate different kinds of agency and personhood and that support relational autonomy. The paper concludes that rather than starting from how inclusive research is currently conceived, the starting point should be a deep knowledge of people with profound intellectual and multiple disabilities. The way forward is likely to be an inclusive research culture that can accommodate ‘being with’ as core to its research approach. This will enable the voices of people with profound intellectual disabilities to inform the research in creating intersubjective knowledge together.

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Section: Why People With Profound Intellectual Disabilities Are Left ...mentioning

confidence: 99%

Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities

et al. 2022

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“…One key issue which was critical to get right was to have robust consent procedures. We drew on ongoing research from The Inclusive Archive Project, which developed legally compliant consent processes and documentation for sharing stories online (Tilley et al, 2021). By July these consent procedures had been through the relevant ethical approval process, 6 and we were ready to launch.…”

Section: Setting Up the Sitementioning

confidence: 99%

Surviving through story: Experiences of people with learning disabilities in the covid19 pandemic 2020–2021

Bartlett¹,

Choksi

et al. 2022

Brit J Learn Disabil

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Background History starts from where we are now ‐ it is not just things that happened a long time ago. The global pandemic began in 2019. It has changed the lives of people with learning disabilities. We began our project during the first lockdown in April 2020. We came together to set up a website to collect stories and support and learn from each other about how to survive and keep strong. Storytelling is very important because it helps us understand what is going on. It is also a way to capture the history of people with learning disabilities at a very difficult time. We know that thousands of people with learning disabilities became ill and died in the flu epidemic of 1918. But nobody recorded their stories in their own words. We want to make sure this does not happen again, so we created an archive to help us remember. Methods The project was managed with an advisory group of people with and without learning disabilities who met monthly to monitor the collection and analysis of stories on the site. A site audit was performed regularly to determine the themes in the stories and who had submitted. The article describes the progress of the project, the stories we have shared, and the challenges we have faced. Conclusions We discuss how people with learning disabilities have been presented in the media and our views about the way we are not heard, or always shown as vulnerable victims. We have found many sad stories, but also positive ones about people being creative and supportive. We look forward to the future and share our ideas about how society could be different and more inclusive. Being part of this project has given us confidence to know we are not alone, and shown us how we can help with the recovery.

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“…Consent was obtained from all participants, including staff, using a two-step approach. For filming and participation in the project, we used a procedure known as rolling consent (Dewing 2007) adapted for persons with severe and profound disabilities (Tilley, Ledger & De Haas 2020). At each visit, project leaders checked that individuals were comfortable with participation and with filming, and they monitored this throughout the session.…”

Section: Ethical Proceduresmentioning

confidence: 99%

Exploring Narrative Competence of Persons with Severe Intellectual Disabilities: Insights from Complementary Inclusive Analytic Frameworks

Grove¹

2022

Scandinavian Journal of Disability Research

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Narrating personal experiences can be challenging for persons with intellectual disabilities. However, they can, and do, participate as narrators in co-constructed stories. Our choice of narrative frameworks will influence how their skills are perceived and developed. When narrators have severe intellectual disabilities, a preoccupation with linear structure is likely to disadvantage them, and approaches designed for monologues, that focus on verbal linguistic elements, emphasise impairments rather than competence. Personal narratives told in everyday interactions have received little attention in this context. Two complementary perspectives, event structure and ethnopoetics, were used to analyse a small story shared between tenants and staff, highlighting different aspects of both narrative competence and conversational scaffolding. This analysis demonstrates that individuals with severe intellectual disabilities can make effective narrative contributions, using a range of patterned and evaluative strategies when stories are co-constructed within appropriately scaffolded interactions.

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Enabling People with Profound and Multiple Learning Disabilities to Belong in Public and Community Archive Collections

Abstract: For guidance on citations see FAQs.

Cited by 6 publications

References 5 publications

Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities

Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities

Surviving through story: Experiences of people with learning disabilities in the covid19 pandemic 2020–2021

Exploring Narrative Competence of Persons with Severe Intellectual Disabilities: Insights from Complementary Inclusive Analytic Frameworks

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