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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
Doing research inclusively: Understanding what It means to do research with and alongside people with profound intellectual disabilities
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.
belonging, inclusive research, intersubjectivity, participatory research, profound intellectual and multiple disabilities
2076-0760
1-13
de Haas, Catherine
745335b2-3a03-4b78-b714-8a7db1c8c526
Grace, Joanna
2d321222-1533-4f68-a76b-1782deb00eed
Hope, Joanna
5d49099e-13bc-49d2-88d8-48e1ec6d25fc
Nind, Melanie
b1e294c7-0014-483e-9320-e2a0346dffef
de Haas, Catherine
745335b2-3a03-4b78-b714-8a7db1c8c526
Grace, Joanna
2d321222-1533-4f68-a76b-1782deb00eed
Hope, Joanna
5d49099e-13bc-49d2-88d8-48e1ec6d25fc
Nind, Melanie
b1e294c7-0014-483e-9320-e2a0346dffef

de Haas, Catherine, Grace, Joanna, Hope, Joanna and Nind, Melanie (2022) Doing research inclusively: Understanding what It means to do research with and alongside people with profound intellectual disabilities. Social Sciences, 11 (4), 1-13, [159]. (doi:10.3390/socsci11040159).

Record type: Article

Abstract

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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Accepted/In Press date: 24 March 2022
e-pub ahead of print date: 1 April 2022
Published date: April 2022
Additional Information: Funding Information: Funding: This research received no external funding. The doctoral research of Joanna Grace is funded by UKRI grant number ES/P000673/1. Publisher Copyright: © 2022 by the authors. Licensee MDPI, Basel, Switzerland. Copyright: Copyright 2022 Elsevier B.V., All rights reserved.
Keywords: belonging, inclusive research, intersubjectivity, participatory research, profound intellectual and multiple disabilities

Identifiers

Local EPrints ID: 456678
URI: http://eprints.soton.ac.uk/id/eprint/456678
ISSN: 2076-0760
PURE UUID: 990b0957-fe7b-4bf4-877f-a887b625ce29
ORCID for Joanna Hope: ORCID iD orcid.org/0000-0002-8939-7045
ORCID for Melanie Nind: ORCID iD orcid.org/0000-0003-4070-7513

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Date deposited: 06 May 2022 16:38
Last modified: 08 Jun 2022 01:46

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Contributors

Author: Catherine de Haas
Author: Joanna Grace
Author: Joanna Hope ORCID iD
Author: Melanie Nind ORCID iD

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