This is important. I’ve had disabled people with fairly “mild” medical conditions (in terms of daily physical anguish) push back when I have tried to talk about disease severity with the critique that I was engaging in some kind of oppression Olympics. Or hierarchy of disability.
Not all disabled people have medical conditions but many of us do, and for some communities, that IS the lion’s share of the fight. When you’re not getting your basic medical needs met, and are being actively harmed, you have to share the facts that mitigate that harm.
Granted, baby disableds can sometimes do this in a way that uses ableist tropes, etc., but we need both a “hall pass” as well as ways to gradually learn. In the gaps, I think there are bridging concepts and language we are missing.
I don’t know how are under what auspices, but I would love to see panels, Twitter chats, or other sustained dialogue on this topic. I still think this is going to be key:
Also want to throw out that if I had been allowed the disability accommodations I needed to finish out my grad school semester when I first got sick, I may never have become long-term disabled. There is a direct relationship between accommodations and health. (Thanks @Harvard)
Also worth throwing out that if I had known what I had, and what the implications of dragging myself to class truly were, I would have dropped everything immediately. But we still live in a world where you need medical permission to be sick.
Oh yeah, and my doctors @Harvard would not write me a prescription for a wheelchair and actively discouraged me from getting one, lest I become “dependent.” (They were telling a woman with a tethered spinal cord to walk as much as possible.)
So in my story at least, ableism, medicine, health, physical safety/well-being, iatrogenic harm, are all intertwined. There are 1000 ways society disabled me, and many of those ways was “medicine.”

(*accommodations were near impossible without a diagnosis.)

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More from @jenbrea

17 Dec
Anyone who wants to reduce #COVID19 DEATHS should be talking about #disability, #longCOVID, and methods for reducing transmission in each and every prevention message.

The “vaccinate so you don’t die”-only message is clearly not working.
Right now 95% of the public health messaging (formal, informal, mass media, social media, expert, lay) is focused on “get vaccinated and boosted so we can reduce hospitalizations and deaths.”
In reality, vaccination alone is not proving to be effective at controlling #COVID19 spread, and while the % of people unvaccinated contribute to this, it is not the sole or ultimate reason.
Read 32 tweets
16 Dec
I don’t think most Americans understand how hard it is to be hospitalized and how sick it is possible to be without ever seeing the inside of a hospital.
Personal anecdote: It took seven years of being primarily bedridden before I was admitted to a hospital for testing. I had to deteriorate to a point where I was constantly becoming paralyzed, would stop breathing, and would pass out, over and over again, for hours.
And ultimately, I was only admitted via the visibility I achieved and the connections I made from directing a nationally televised film. I had plenty of experiences being turned away from the ERs of multiple hospitals. (This was all in pre-pandemic times.)
Read 4 tweets
16 Dec
Our community takes a very non-judgmental approach to suicide because we understand the extremes of suffering people have had to endure. All I can say is that it gets better, even if your physical health does not, and it is still possible to live a very good life. #longCOVID
My first three years, I had many dates and many bargains with myself. I thought that my post-viral illness was going to end in me taking my life. “I can’t watch myself be destroyed like this so in six months, if things don’t get better, I’ll…”
I’d make it to six months, then give myself another six months, then another. My symptoms were SEVERE. @unrestfilm does not begin to touch what I actually experienced.
Read 45 tweets
16 Dec
My last few days on Twitter in health officials’ and MDs’ mentions urging them that “maybe you should think more about #longCOVID” feels eerily like Feb 2020 when I was urging “we need to mask the entire population.” Still remember when this was a minority opinion among experts
To be clear, I wasn’t the only one. I used to live in Asia, and spent time in cities where, out of politeness, people mask themselves when they *have a cold* to avoid sharing it with others. When it launched, I went bananas supporting the #masks4all campaign.
I am convinced this grassroots, mainly Twitter campaign brought us the one of the most effective risk reduction tools of this pandemic, which is both inspiring and deeply, deeply sad on many levels. (As in, it shifted national policy.)
Read 4 tweets
15 Dec
I had the privilege of talking to someone almost two years ago who was very intimately involved in fighting the pandemic and shaping our entire response to it. I offered to present (or curate people to present) to their organization on post-viral illness and disability.
It seemed important to have more (rather than less) information. And perhaps some of their considerable resources could go into research & prevention. Or at least their influence.

I was rebuffed.
He told me that all their efforts were focused on the vaccine, and once there was a vaccine, it would end the pandemic, and so would be the best way to prevent post-viral illness.

A friend in the UK told me there are triple vaxxed households experiencing Omicron outbreaks.
Read 9 tweets
15 Dec
Disabled folk…as we are know, medicine has long held a major blind spot when it comes to disability. I think this gap is feeding into poor public education about the true risks of COVID, but it is hard to have this convo with MDs who feel under siege and under-supported…
…and are experiencing their own traumas. At the same time, remaining silent about constantly being left out (not counted, barely mentioned) isn’t an option. I am thinking here about #HighRiskCovid19 but also about #longCOVID and this reality
If we had educated the public from day one regarding the risks of long-term disability up and down the age bracket, rather than solely the concern of those most at risk of dying, could we have prevented many deaths and injuries?
Read 16 tweets

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