Disability-informed… If you’ve been following us, you’ve heard us use this phrase non-stop in the last month. So, you would expect that to be a common phrase, right? After all, the idea seems relatively self-explanatory.
Well, hold on tight friends, because once again, the disabled folks (including our medically complex and disabled children) are being overlooked and under-consulted. We’re about to share some wild statistics on just how bad this situation is.
In this episode, Erica and Alyssa are breaking down all the parts of what it means to be “disability-informed” in a variety of aspects.
Not only that, but they cover how you can become more disability-informed, and what being disability-informed could mean in terms of better healthcare, access, and systems for disabled folks.
Plus, they’re diving in to how you can tell if the educational, medical, and other professionals in your child’s life are actually disability-informed (and maybe what to do if they’re not.)
In this episode:
[00:54] Erica and Alyssa discuss why men’s flannel is superior to women’s flannel (it’s not fair!!)
[03:26] Erica’s current obession (it may involve a certain pop star and her football playing boyfriend)
[04:45] Erica and Alyssa discuss their favorite 2000s indie/alt music and why the music scene is more chill now
[08:22] The Parks & Rec character that Erica and Alyssa are each embodying right now
[11:05] “Disability-informed” and how we maybe possibly coined that term (HOW?! WHY does this not already exist?!)
[15:22] Why we need officially defined terms like “disability-informed” and where disabled voices are still being left out
[20:27] The societal benefits to having spaces, places, and more that are disability-informed
[24:44] How to identify professionals and others who are disability-informed (some of this is going to be both super obvious and kind of surprising at the same time)
[33:11] How being disability-informed can benefit your child (and you!)
[34:45] How you can become even more disability-informed
[39:54] Why, as a caregiver, you are already disability-informed to a certain extent
[45:45] Why Erica and I are the biggest nerds about this stuff
Links:
Listen to Alyssa’s episode on The Rare Life podcast.
Read Alice Wong’s anthology Disability Visibility and get more information about the Disability Visbility Project.
Read Demystifying Disability by Emily Ladau.
Learn more about the pioneering disability right’s activist Judith Heumann.
NIH article designating people with disabilities as a population with health disparities.
University of Sydney article on reducing prejudice against parents of children with disabilities.
Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.
WAKE AHEC article on the foundations of disability informed practice.
The Conversation article on the lack of disabled voices in DEI representation.
Hi Erica and Alyssa
It’s so exciting to see you talking about “disability-informed caregiving.” We came up with the term “disability-informed practice” in 2022 https://www.sydney.edu.au/news-opinion/news/2022/06/20/resource-will-help-reduce-prejudice-against-parents-with-intelle.html
We coined the term to highlight that if we are to create an inclusive society, it is EVERYONE’S business to be informed about disability. In coming up with the term, we were influenced by how the term “trauma-informed” has been adopted and become part of the lexicon of health and social care professionals and organisations.
I totally agree we need to continue to unpack what we mean by disability-informed ….to avoid it becoming co-opted or turning “disability informed …” into an emptying buzzword. In our report, we talk about becoming “disability-informed” along a continuum.
Anyhow, I would love to chat more with you.