Introducing a Human Rights-based Disability Research Methodology

Arstein-Kerslake, Anna; Maker, Yvette; Flynn, Eilionóir; Ward, Olympia; Bell, R.L.; Degener, Theresia

doi:10.1093/hrlr/ngaa021

Cited by 17 publications

(23 citation statements)

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“…Far from conventional assumptions about disability in line with traditional medical and academic concerns and interests (charity model), disability research that works within the social model promotes research agendas that are focused on the emancipation and empowerment of disabled people. These need to engage with innovative methodologies that can facilitate a sharing of personal experiences and creating debate ( Barnes, 2004 ; Barnes & Mercer, 1997 ; Hoge, 2008 ; Oliver, 2004 ), including disabled people’s voice in the leadership and design of research ( Arstein-Kerslake et al., 2020 ). A development of emancipatory, participatory, and inclusive research methodologies is broadly suggested in the last decade, and this study provides a substantial contribution to that end.…”

Section: Discussionmentioning

confidence: 99%

On How I Got Through COVID-19 Lockdown: An Autoethnographic Approach to Resilience in Disability

Hall

Djurdjevic

Deusdad

2023

Qualitative Inquiry

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I explore how I—a person born with a physical disability living alone in a foreign country—was able to cope with COVID-19 lockdown. I used the autoethnographic method (Chang, 2016) to scrutinize sources of my resilience. Through evocative autoethnography, I reviewed risks/coping strategies recalling the lessons drawn from my childhood in the care of two supportive women. Then, performing analytical autoethnography, I self-assessed my lived experiences through a social science lens. A theoretical validation of my personal story helped me to acknowledge how resilience in my life had been built and was mobilized in the face of the pandemic.

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Section: Discussionmentioning

confidence: 99%

On How I Got Through COVID-19 Lockdown: An Autoethnographic Approach to Resilience in Disability

Hall

Djurdjevic

Deusdad

2023

Qualitative Inquiry

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“…The aim is to provide useful insight, rather than 'sterile abstractions'. 52 The literature on inclusive research methodologies is expanding rapidly, with one of the more recent contributions by Arstein-Kerslake and colleagues 53 advocating the inclusion of people with disability in research projects.…”

Section: Reflections On Activist Scholarship In Human Rightsmentioning

confidence: 99%

Human rights and care homes for older people: a typology of approaches from academic literature as a starting point for activist scholarship in human rights and institutional care

Green

Tinker

Manthorpe

2021

The International Journal of Human Rights

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Care homes for older people attract human rights discourse. This has intensified during the Covid-19 pandemic, which disproportionately affected care home communities with various human rights ramifications. Activist scholarship in human rights can contribute to the protection and realisation of the rights of people living, working in and visiting care homes through highquality research. This article reports the findings of an analysis of pre-pandemic scholarship that explored the ways authors approached the topic of human rights of older people in care homes. The aim was to produce a typology of approaches to the topic as a basis for critical reflection and as a starting point for future activist scholarship in gerontology, social policy and law. Reflexive thematic analysis of 23 international English-language peer-reviewed articles published between 1998 and March 2019 was undertaken. Analysis was framed in the context of the health and social care setting of England. The article reports the pertinent and common assumptions that care homes are 'inherently risky' places for the protection of the human rights of 'vulnerable' care home residents. The article highlights five types of approaches: the anti-institutional, the legalistic, the care quality, the equality approach, and the issue-based approach.

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“…Extreme citizen science, a method typically used for citizen engagement in the natural sciences, has the potential to offer an ultra‐inclusive, dignified approach to research (English et al, 2018 ; Haklay, 2013 ; Stevens et al, 2014 ). Grounded in Alan Irwin's original conceptualisation of citizen science, in which research is done for and by citizens, with an emphasis on co‐design and co‐creation of knowledge, extreme citizen science has the potential to enact meaningful citizen engagement outcomes that produce implementable change in health research fields, like occupational therapy (Arstein‐Kerslake et al, 2020 ; Borda et al, 2019 ; Irwin, 1995 ; Strasser et al, 2019 ). Extreme citizen science gives voice to diverse groups and new perspectives, especially among populations that are traditionally silenced in and by research (Green, 2016 ).…”

Section: Introductionmentioning

confidence: 99%

The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research

Chapman

Dixon

Cocks

et al. 2022

Aus Occup Therapy J

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Introduction: Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving beyond inclusive research to a dignified framework for research prioritises lived experience and human rights in health research.Methods: Using nominal group technique over a series of three working group meetings, eight experts, including three with lived experience of disability and research, prioritised principles and steps for conducting dignified rehabilitation research in partnership with citizens with disability. Findings: Embedding transparency, accessibility and inclusion, dignified language, and authenticity throughout research were integral to maintaining dignity and safety for citizens with disability engaged in research. The Dignity Project Framework encompasses five phases, namely, (1) vision, (2) uncover, (3) discuss, (4) critical reflection, and (5) change, which address the prominent criticisms of the disability community about research and embed the principles of importance into research practice. Conclusion:The framework builds on inclusive research frameworks to a human rights-based, dignified framework for extreme citizen science. Grounding disability in contemporary conceptualisations and providing a method for democratising knowledge production provide occupational therapists with a method for dignified partnership with citizens with disability.

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Introducing a Human Rights-based Disability Research Methodology

Cited by 17 publications

References 0 publications

On How I Got Through COVID-19 Lockdown: An Autoethnographic Approach to Resilience in Disability

On How I Got Through COVID-19 Lockdown: An Autoethnographic Approach to Resilience in Disability

Human rights and care homes for older people: a typology of approaches from academic literature as a starting point for activist scholarship in human rights and institutional care

The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research

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