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...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2022-04-01
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| Series: | Social Sciences |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2076-0760/11/4/159 |
| _version_ | 1827619413629599744 |
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| author | Catherine de Haas Joanna Grace Joanna Hope Melanie Nind |
| author_facet | Catherine de Haas Joanna Grace Joanna Hope Melanie Nind |
| author_sort | Catherine de Haas |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-09T10:28:49Z |
| format | Article |
| id | doaj.art-0cca45aa8e4b49448e09cb6a76b7ebad |
| institution | Directory Open Access Journal |
| issn | 2076-0760 |
| language | English |
| last_indexed | 2024-03-09T10:28:49Z |
| publishDate | 2022-04-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Social Sciences |
| spelling | doaj.art-0cca45aa8e4b49448e09cb6a76b7ebad2023-12-01T21:24:32ZengMDPI AGSocial Sciences2076-07602022-04-0111415910.3390/socsci11040159Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual DisabilitiesCatherine de Haas0Joanna Grace1Joanna Hope2Melanie Nind3School of Education, University of Southampton, Southampton SO17 1BJ, UKSchool of Education, University of Southampton, Southampton SO17 1BJ, UKSchool of Health Sciences, University of Southampton, Southampton SO17 1BJ, UKSchool of Education, University of Southampton, Southampton SO17 1BJ, UKPositive 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.https://www.mdpi.com/2076-0760/11/4/159inclusive researchparticipatory researchprofound intellectual and multiple disabilitiesbelongingintersubjectivity |
| spellingShingle | Catherine de Haas Joanna Grace Joanna Hope Melanie Nind Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities Social Sciences inclusive research participatory research profound intellectual and multiple disabilities belonging intersubjectivity |
| title | Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities |
| title_full | Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities |
| title_fullStr | Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities |
| title_full_unstemmed | Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities |
| title_short | Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities |
| title_sort | doing research inclusively understanding what it means to do research with and alongside people with profound intellectual disabilities |
| topic | inclusive research participatory research profound intellectual and multiple disabilities belonging intersubjectivity |
| url | https://www.mdpi.com/2076-0760/11/4/159 |
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