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"Inclusive research practice is both a moral obligation and a practical imperative"
So delighted to share this new paper, written with @Kabieuk @scrappapertiger @MxOolong and @cjcrompton
Watch out: gif-heavy thread coming up...
https://link.springer.com/epdf/10.1007/s40474-021-00227-z?sharing_token=xQ9IUJygTx8ra9YdjqD59ve4RwlQNchNByi7wbcMAY4Bl4-ebamghqBDtaWySiEzENPj69jmer5OjcvxGx41OYm9SPzabQi2kIskirlz5yEOwn97J8rjMnBvfBqNEpRf_DOr40cagUi9u7kDb3moXCBHgpEhzzjfjiBJJBuO_Gs%3D
So delighted to share this new paper, written with @Kabieuk @scrappapertiger @MxOolong and @cjcrompton
Watch out: gif-heavy thread coming up...
https://link.springer.com/epdf/10.1007/s40474-021-00227-z?sharing_token=xQ9IUJygTx8ra9YdjqD59ve4RwlQNchNByi7wbcMAY4Bl4-ebamghqBDtaWySiEzENPj69jmer5OjcvxGx41OYm9SPzabQi2kIskirlz5yEOwn97J8rjMnBvfBqNEpRf_DOr40cagUi9u7kDb3moXCBHgpEhzzjfjiBJJBuO_Gs%3D
Here's our opening:
"Inclusive research takes place with members of the relevant population rather than merely happening to or for them
In the study of neurodevelopmental diversity, it is characterised by the inclusion of neurodivergent people in empowered and meaningful roles"
"Inclusive research takes place with members of the relevant population rather than merely happening to or for them
In the study of neurodevelopmental diversity, it is characterised by the inclusion of neurodivergent people in empowered and meaningful roles"
Inclusive research practice is:
- consultation, partnership and collaboration with community representatives
- citizen science and community leadership of research
It includes community-based participatory research (CBPR) but also more individual & opportunistic engagement
- consultation, partnership and collaboration with community representatives
- citizen science and community leadership of research
It includes community-based participatory research (CBPR) but also more individual & opportunistic engagement
We go on to outline six features of inclusive research practice:
1. who to approach and how
This is pretty self-explanatory = first steps in setting up inclusive research practice
1. who to approach and how
This is pretty self-explanatory = first steps in setting up inclusive research practice
2. Setting expectations
This section is about creating a working relationship with clear roles, responsibilities and expectations. Not over-promising and having a strategy for resolving differences of opinion.
This section is about creating a working relationship with clear roles, responsibilities and expectations. Not over-promising and having a strategy for resolving differences of opinion.
3. community-specific inclusion measures
This is about considering the access needs and lived experience of the people you are working with, so that they can bring their A-game to your shared project
This is about considering the access needs and lived experience of the people you are working with, so that they can bring their A-game to your shared project
4. inclusion and intersectionality
It's important to remember that there's more to people's lives than the specific dimension your research is focused on. Are you bringing other kinds of lived experience into your collaboration?
It's important to remember that there's more to people's lives than the specific dimension your research is focused on. Are you bringing other kinds of lived experience into your collaboration?
5. the role of empowerment
This section is about actively identifying and breaking down the power imbalances that can prevent effective co-working. Stuff like paying people for their time.
This section is about actively identifying and breaking down the power imbalances that can prevent effective co-working. Stuff like paying people for their time.
6. knowledge exchange for inclusion
Finally we discuss the role of effective science communication and knowledge exchange. We need to commit to long-term upskilling of community members in the research process to enable more and more effective inclusion and co-delivery
Finally we discuss the role of effective science communication and knowledge exchange. We need to commit to long-term upskilling of community members in the research process to enable more and more effective inclusion and co-delivery
We end with a call for funders to help drive the inclusive research agenda, and to push us beyond participatory into emancipatory research.
The best inclusive research should positively change the lives of those involved, as well as driving new discovery and practice.
The best inclusive research should positively change the lives of those involved, as well as driving new discovery and practice.
The paper cites amazing work by @Sarah_NottsUni @LauraMayCrane @cnicolaidis @liz_pellicano and others - thank you all for inspiring us.
It also includes a wee glossary of some neurodiversity terminology which some might find handy.
It also includes a wee glossary of some neurodiversity terminology which some might find handy.
Huge thanks to @Kabieuk @scrappapertiger and @MxOolong for partnering with me & @cjcrompton on a range of projects - giving us the confidence to propose writing this paper and making sure it stayed on track.
You can support their work by following @AMASEdin and @ARGHighland
You can support their work by following @AMASEdin and @ARGHighland
Thank you also to the 100s of individuals & organisations in the autistic community supporting our work. We are indebted to you all.
You can joining our research mailing list here: https://www.ed.ac.uk/salvesen-research/newsletter-sign-up
and here's another link to the paper: https://link.springer.com/article/10.1007%2Fs40474-021-00227-z
You can joining our research mailing list here: https://www.ed.ac.uk/salvesen-research/newsletter-sign-up
and here's another link to the paper: https://link.springer.com/article/10.1007%2Fs40474-021-00227-z
