As you know, I have thoughts and feelings on codesign. But I came across this research by DANA and thought I’d share the points that felt most important. Important to me basically means the points that I’ve seen disability organisations fail continually to do, or do well. Most of my feelings are organistion -> individual based, and the focus of this was organisational. That is to say, it doesn’t cover things like paying individuals, only organisations. But given that’s their audience, it makes sense.
Below, the italics are my thoughts and the quotes are (you guessed it) quotes from the research paper linked above. Subheadings are also directly from the research paper.
Allowing for non-ableist forms of expression.
“Traditional forms of research can feel limiting in terms of how people with disability prefer to communicate. Co-designing methodologies must begin with recognising diverse communication methods are valid, central ways of sharing knowledge, not deviations from the ‘norm’. A key issue here is that researchers may take for granted communication preferences that are deeply ingrained in research methods such as interviews and working group, that rely on verbal and or written communication.”
This is a huge one for me, especially with organisations who demand time consuming sessions and reject asynchronous communication. I can’t help but feel that organisations who demand able bodied communication only want the most performative and palatable disabled people to be included.
Closing the loop: Sharing the benefits of research.
“A key issue raised among community partners, including our First Nations community partners is the burden on people with disabilities to repeatedly share personal and sometimes traumatic experiences without clear pathways for how their insights will be used or whether they will drive change.”
I know I’m not the only one (and I know this doesn’t only apply to disability work but also poverty work) but being asked to relive bad experiences is common. We have to keep reliving things to make complaints to get change (which often fails due to power and money differentials), and then organisations also want to know these details. At what cost? (All types of cost.)
Distribution of resources: Time, money, data.
“While it is now commonplace for research partners to offer renumeration for research participation, these agreements often impose ableist expectations in terms of time and resources. Specifically, people with disability are often expected to produce and participate in research at the same pace as non-disabled researchers, and often with less (financial and informational) resources.”
Reasonable accomodations or adjustments need to be applied in these situations as well.
Sharing data: A mutual exchange
“Many community partners expressed frustration with research that takes years to publish, which is when the opportunity to use research to influence policy on systemic issues has passed.”
Another one that I’ve found lacking; once it was offered that I could read a paper later, as if that was the same as contributing to it. Nope, reading a paper later is NOT contributing and having my voice heard!
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