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Something scary happened to me yesterday, and I want to talk about it because I think it’s an important look at ableism and at how disabled people are treated by the medical industrial complex. Sit back & take the ride with me because it’s a long story. 1/x
So 2 or 3 times a day, I adjust myself in my wheelchair by pulling myself forward with something in front of me to relieve pressure on my hips/butt. It is something I've done for years, and it has always worked, until yesterday. 2/x
Yesterday my body was feeling like an overcooked noodle. I went to scoot myself forward, and ended up face-planting on my desk. I pinned my wrist under my body, so I wasn't able to use it as leverage to push myself back up. 3/x
I didn't panic immediately because I knew I had Siri to call someone, but I quickly realized my iPhone was upside down and wasn't going to call anybody for me. I asked my Alexa to call emergency services and she told me she couldn't. My last resort was my iPad, 4/x
which for some reason hadn't transferred my contacts over when I set it up. So until somebody texted me, I couldn't use Siri on my iPad to contact anybody. Thankfully @skitchintweets texted me after I didn't respond to his FaceTime. 5/x
I was able to use voice command to tell him to call emergency services. He did, they came, and I am fine aside from some hip & wrist pain. A scary experience, but it also put a lot into perspective for me, which is why I want to create this thread. 6/x
You might be wondering what this has to do with ableism, and I am going to try my best to explain the nuanced pieces of this. What happened was an accident. WHY it happened is due to ableism. 7/x
Some of you may know that I've been getting the first approved treatment for my disease for a long while now. I haven't had a dose since November. Due to people deciding they don't have to wear masks to protect high-risk people and mitigate hospital overflow, 8/x
my March dosing was cancelled and indefinitely postponed. Ableism #1: People don't give a damn about anybody but themselves. They don't care to think about people who are getting necessary, life-sustaining treatments. They just... don't want fabric on their face. 9/x
When my hospital finally decided it is safe to dose again a few weeks back, my insurance denied my next dose because I am "not showing clinical improvement". Ableism #2: Unfortunately, insurance providers see it as unnecessary treatment, 10/x
because I already present with such complex, lifelong symptoms. They think, well what's the point if she'll never be abled? I don't WANT to be abled. I will NEVER be healthy and I will NEVER be cured, but a medicine that keeps my disease from progressing 11/x
is absolutely the definition of clinical improvement. I want to have the ability to reposition myself in my chair without almost breaking my wrist. I want to wake up knowing that because of treatment, my disease isn't taking more ability from me. I want sustainability. 12/x
I was denied from a clinical trial for another treatment for my disability for the exact opposite reason, "I am not showing clinical decline". Except when I was able to reposition myself for years and suddenly am unable, that is decline. I can feel it in my body, 13/x
regardless of if it can be seen in body function tests. Ableism #3: People have it worse than me, and therefore I don't deserve treatment. But why? Why doesn't everybody who requests and requires treatment for a condition deserve it? 14/x
The medical industrial complex places disabled people in impossible boxes. We are too disabled or not disabled enough. If we don't improve or decline within some bullshit parameters they've created without ever even experiencing the disability, we don't get treatment. 15/x
And on top of that, abled people think their lives have so much more value than disabled people's lives. I keep hearing the solution to Covid-19 is for high-risk people to stay home... what, forever? Because disabled people DO work and DO participate in society too. 16/x
Anyway, this is wildly long, and if you've read the whole thing, know how much I appreciate you. I'm really struggling right now with how deeply ableist literally EVERYTHING is, and how no one seems to notice or care. I hope you all hear this. 17/17
@Roche @genentech Please reconsider your decision to allow me access to Risdiplam. If this thread shows you anything, it’s that I truly need this treatment.
