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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& #39;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& #39;t able to use it as leverage to push myself back up. 3/x
I didn& #39;t panic immediately because I knew I had Siri to call someone, but I quickly realized my iPhone was upside down and wasn& #39;t going to call anybody for me. I asked my Alexa to call emergency services and she told me she couldn& #39;t. My last resort was my iPad, 4/x
which for some reason hadn& #39;t transferred my contacts over when I set it up. So until somebody texted me, I couldn& #39;t use Siri on my iPad to contact anybody. Thankfully @skitchintweets texted me after I didn& #39;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& #39;ve been getting the first approved treatment for my disease for a long while now. I haven& #39;t had a dose since November. Due to people deciding they don& #39;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& #39;t give a damn about anybody but themselves. They don& #39;t care to think about people who are getting necessary, life-sustaining treatments. They just... don& #39;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& #39;s the point if she& #39;ll never be abled? I don& #39;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& #39;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& #39;t deserve treatment. But why? Why doesn& #39;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& #39;t improve or decline within some bullshit parameters they& #39;ve created without ever even experiencing the disability, we don& #39;t get treatment. 15/x
And on top of that, abled people think their lives have so much more value than disabled people& #39;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& #39;ve read the whole thing, know how much I appreciate you. I& #39;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.
