I don’t know if this topic will have any longevity, but I found a fascinating video, and realised that I didn’t really have anywhere to put it.
So I’ll start a topic and put it here.
Disability is big and complex and heterogeneous and hard to get your head around, and isolating. So I figured this could be a place where we could talk about being disabled in the widest sense, and what sucks about it, and what we can do about it.
Technoablism: “You made a thing for me, but you didn’t make it for me, you made it so that you don’t have to feel sorry for me. And because you didn’t ask me what I need, it doesn’t actually help. But, thanks, I guess?”
The topic will last at least as long as you keep posting. As it’s your topic you are not restricted by the only-two-posts-in-a-row rule. If the topic should be closed automatically ping one of the “leaders”, they can open it again.
I had just listened to that conversation on Adam’s podcast and found it very interesting and thought-provoking.
As a mechanical engineer I’m probably guilty myself of some of the mindset that his guest was talking about- with a tendency to focus on (or at least geek out about) clever technical prosthetics rather than more mundane, practical solutions to improve quality of life for people. For example, I’ve been very interested in Ian Davis’ progress over the last several years in designing and building his own partial prosthetic hand:
But it was certainly sad to hear her talking about people being shamed into using prosthetic legs and whatever, even by other disabled people, when other solutions may be more appropriate for any given individual.
An example in my own life is that I admit that I’ve been frustrated at times that my mother-in-law has been very inconsistent about wearing her hearing aids, and when she doesn’t have them in she will frequently interrupt a conversation at dinner asking us to repeat ourselves. After a few instances of this sometimes a family member or I will blurt out something to the effect of “why don’t you just wear your hearing aids if you can’t hear us?” and I know that’s not cool. I will have to try to do better.
I think the main problem we all have with ablism and disablisms is that both things are moving targets for everybody. I know what I can and can not do changes moment to moment and something I couldn’t do yesterday may be something I can muddle through today. There is no consistency, just hard and soft barriers to some activities.
I think as a society if we can remove most of those hard barriers we will all be better off. It is nice to see a trend of trying to be more inclusive, but trying to make everyone similarly able is a lesson in futility.
Folks dealing with disabilities are far more likely to need a consistent primary care provider, and have more difficulty finding one. Speaking for myself, we are currently seeing 30-40 patients per day, and have a huge wait list. My next available for well visit is next May. For new patient? August-September. There just are not enough to go around, so we overbook as much as we can. And this hits our patients with higher levels of need so much more. We are stretched incredibly thin, and if someone requires more time or resources than was planned for, things can get screwy very very fast. I have a policy that the only patient who matter sis the one I am with at that moment, which sounds good, until I am 45, 60, 90 minutes behind. (For an adult doc, that may not be much, but for us that is huge.) We get it done, by working through lunch, over into the evening, but that puts more stress on staff, and we have much higher turnover than we ever have before. Not suggesting an answer, because I don’t know that there is one. Just asking those who do have a PCP to be nice to them. We are doing the best we can in a broken and busted system.
i know that i am very lucky to have the pcp i have and that she is local - i don’t have to drive 40-50 minutes to the mainland for a visit.
i am very lucky that this very busy doctor takes time with me, going so far as to call me personally on a sunday night to discuss labs i had done on the previous friday! she goes out of her way to be very thorough to the point that i worry for her! if she is this involved with all of her patients, how on earth does she have any personal life to herself?!
heart goes out to you, doc! you seem like that kind of care provider!
I’m autistic & didn’t know it until I was 32, I have Hypermobile Ehlers Danlos Syndrome & didn’t know it until I was 36. Both of these are lifelong disabilities, so why didn’t I know I was disabled for so long? Why was I so wrong about disability?
I used a wheelchair when I started my undergraduate studies at Texas A&M way back in 1987. Because of my disability, I qualified for a scholarship from the Texas Rehabilitation Commission (I have no idea if they still do this). It wasn’t a ton of money, but every little bit helps. Anyway, the state had a counselor at each university, supposedly to help disabled students who had these scholarships, and we were required to meet with the counselor at least once a year. I first met with mine right before classes started my freshman year and he asked me what my major was. When I told him Aerospace Engineering, he told me I should think about something easier. My disability was a bone disorder. I was a National Merit Scholar and finished 4th in my high school graduating class. This was the person who was supposed to be advocating for us. I ignored his advice, and proceeded to only meet with him the required once per year.