RESPONSE TO AN ARTICLE THAT IS WORTH READING BUT I HAVE FEELINGS!
First, here's the link.
One main concern.
Do we really not talk about the burden of care? I think we do, but in unproductive and damaging ways that harm both the disabled person and those acting as caregivers.
I feel like the "burden of care" is way over-represented in disability narratives, as a "hard to love" storyline that too-often eclipses the (also problematic) arc of the disabled character. Like Toby's depression in This is Us, which feels more about how hard his disability is for his partner. Or the Good Doctor, where yes the Doctor is autistic, but life sure is hard for his loved ones dealing with him! But he's a doctor! So brave!
Or how the autistic patients story feels primarily about his mother's sacrifice so he has to "do the right thing" and go to a group care facility so she can be unburdened. One autistic person telling another that his needs matter less than his mother's, as opposed to talking about how a facility would better meet his needs. Going into the facility is a valid choice, but in this story it's told in a way that centers the loved one's pain and reduces the disabled person to being primarily a problem.
He is not the burden in this scenario. The lack of family/societal support and of accomodations are the burden.
I hope we can discuss "the burden of care" as a valid thing that needs to be addressed, but that conversation can't paint disabled people themselves as burdens (broken/negative value) without causing harm.
We absolutely do need to talk about:
Disabled people, not as being broken or a burden, but as people who need accomodations just as much disabled people need tables and chairs and stairs and forks.
People who need different accomodations, not weird ones. Not ones we take for granted as necessities. People whose needed accomodations are seen as a burden. A problem who is killing his mother with stress.
In the social model of disability, Disabled people are primarily impaired by societal lack of the accomodations (tools) that THEY need, as opposed to the assumption that all the accomodations we regularly invest in for abled people are just expected as normal behavior.
We absolutely need to prevent caretaker burnout, though. We need to address:
How best to divide up the work of creating any needed accomodation.
How best to help/support those who get overburdened with necessary accomodations tasks, and to prevent burnout.
We don't have to throw disabled people under the bus to achieve these goals!