‘Working together is like a partnership of entangled knowledge’: exploring the sensitivities of doing participatory data analysis with people with learning disabilities

Tilley, Liz; Strnadová, Iva; Ledger, Sue; Walmsley, Jan; Loblinzk, Julie; Christian, Paul; Arnold, Zara Jane

doi:10.1080/13645579.2020.1857970

Cited by 19 publications

(17 citation statements)

References 25 publications

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“…Its grassroots activists advocate for the full autism spectrum (Kapp, 2020;Ne'eman & Pellicano, 2022), and likewise, value the contributions of people with intellectual disabilities to scholarship and society. Supported by the growth of the inclusive post-secondary education movement (Raynor et al, 2016) and participatory research (e.g., Chapko et al, 2020;Tilley et al, 2021), people with intellectual disabilities increasingly contribute to higher education and participatory research. The issue of the scope or boundaries of neurodivergence is important but relatively unexplored and demands future research on the views of people with neurological conditions (see Dwyer, 2022;Ne'eman & Pellicano 2022 for discussions on ethical considerations).…”

Section: Part 1: Neurodiversitymentioning

confidence: 99%

Bridging Neurodiversity and Open Scholarship: How Shared Values Can Guide Best Practices for Research Integrity, Social Justice, and Principled Education

Elsherif¹,

Middleton²,

Phan³

et al. 2022

Preprint

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Not all people conform to what is socially construed as the norm and divergences should be expected. Neurodiversity is fundamental to the understanding of human behaviour and cognition. However, neurodivergent individuals are often stigmatised, devalued, and objectified. This position statement presents the perspectives of neurodivergent authors, the majority of whom have personal lived experiences of neurodivergence(s), and discusses how research and academia can and should be improved in terms of research integrity, inclusivity and diversity. The authors describe future directions that relate to lived experience and systematic barriers, disclosure, directions on prevalence, stigma, intersection of neurodiversity and open scholarship, and provide recommendations that can lead to personal and systematic changes to improve acceptance of neurodivergent individuals’ lived experiences within academia.

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Section: Part 1: Neurodiversitymentioning

confidence: 99%

Bridging Neurodiversity and Open Scholarship: How Shared Values Can Guide Best Practices for Research Integrity, Social Justice, and Principled Education

Elsherif¹,

Middleton²,

Phan³

et al. 2022

Preprint

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“…Sue listened to these and suggested we work together to write about these history projects. In this way I became a published author (Tilley, Christian, et al, 2021; Tilley, Strnadová, et al, 2021).…”

Section: Setting the Scenementioning

confidence: 98%

Being part of history, being part of activism: Exploring the lives and experiences of Black people with learning disabilities

Christian

Ledger

2022

Brit J Learn Disabil

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My name is Paul Christian. I am a Black British man with learning disabilities. The lives and experiences of Black people with learning disabilities are under ‐ represented in the UK history of learning disability. This article explains my involvement in activism to change this and shares the learning from these projects. It discusses the process of co‐writing and why research is needed to record and share the experiences of Black people admitted to the former institutions and the importance of accessible information about Black history, race and racism.

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“…Our review found that stages of analysis of photovoice data such as coding and synthesis was largely seen as the province of academic researchers. Involving people with intellectual disabilities in data analysis can be seen as a 'step too far' in inclusive research with people with intellectual disabilities (Nind, 2011), though more recently researchers have been developing and refining methods for addressing this (Tilley et al, 2021). More commonly researchers in the reviewed studies engaged in 'member checking' of the themes generated by researchers from photovoice data.…”

Section: Record and Reflect Community Concernsmentioning

confidence: 99%

A systematic review of photovoice research methods with people with intellectual disabilities

Chinn

Balota

2023

Research Intellect Disabil

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Background: Photovoice is an arts-based participatory action research methodology that is growing in popularity. Our aim was to systematically review photovoice research with people with intellectual disabilities to describe the current 'state of the art' and identify areas for further methodological consideration.Methods: We searched five databases using search terms relating to photovoice and intellectual disabilities. Thirty one studies met inclusion criteria. We used thematic analysis to identify common themes. Findings:The themes identified-adaptations to the photovoice method, collaboration, participation and power, impact and outcomes-explored how far the 'voice' and agency of participants with intellectual disabilities taking part in photovoice research were supported and whether photovoice lived up to its promise as 'action' research. Conclusion:Photovoice creates opportunities for self-representation of people with intellectual disabilities through photography. Participants could be further supported to engage with researchers in critical reflection on findings and collaborate on tangible outcomes.

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‘Working together is like a partnership of entangled knowledge’: exploring the sensitivities of doing participatory data analysis with people with learning disabilities

Abstract: The Open University's repository of research publications and other research outputs 'Working together is like a partnership of entangled knowledge': exploring the sensitivities of doing participatory data analysis with people with learning disabilities

Cited by 19 publications

References 25 publications

Bridging Neurodiversity and Open Scholarship: How Shared Values Can Guide Best Practices for Research Integrity, Social Justice, and Principled Education

Bridging Neurodiversity and Open Scholarship: How Shared Values Can Guide Best Practices for Research Integrity, Social Justice, and Principled Education

Being part of history, being part of activism: Exploring the lives and experiences of Black people with learning disabilities

A systematic review of photovoice research methods with people with intellectual disabilities

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