Stuff I want to say to the “friends” who have abandoned Covid solidarity 🧵(thread)
A conflict in opinions is fine. (Do you prefer tea or coffee?) But a clash in ideology of this magnitude will drive a wedge in our relationship. (Do people deserve to be safe or get their lives cut short by a rapidly mutating, vascular, and immunosuppressive virus?)
I am sick for the second time and both my verbal filter and patience are gone while I wait for people to “learn” how to value human life.
I’m sorry, but if you have not demonstrated allyship and solidarity with disabled, chronically ill, and immunocompromised people, even at this point…
I have to compartmentalize a significantly difficult part of my experience in my relationship with you, and for your comfort, not mine.
It’s as if I were on fire, but I have to ignore it when talking to you, because you won’t help me put it out. Even while I watch you douse other vulnerable people and our own community members in flames and flammable liquids.
I don’t want to “like” or nod and smile at your superspreader event pictures and lifestyle updates.
I don’t want to pretend it’s ok that you co-opt and dilute terms like health equity, social justice, harm reduction, or community care to describe your politic and ethos.
Your complicity in the deadly status quo has caused a loss in trust and literal safety around you.
Where does it even leave us if you are ok with enabling a mass disabling and mass death event?
I understand there is pressure to give into normalcy, but that is not an excuse to perpetuate harm and further marginalization of those of us who resist that narrative!
You are not solely responsible for weaving the fabric of ableism, but you are responsible for your role in upholding its structure.
I know it’s hard, and I’m willing to support you as a co-conspirator, but I’m not willing to coddle your fragile cognitive dissonance.
Wearing a mask and advocating for safer working and living conditions would take far less sacrifice than the grief of losing comrades and loved ones too early…
…Or coordinating the long-term care of comrades who have been maimed by Long Covid, then abandoned in a society that refuses to care for them.
(But of course, you would be the one doing the abandoning, once said friend is unable to perform to your needs, right? I know because I’m one of them.)
If you’re reading this and you think that millions of lives are worth discarding to maintain the empty comfort of abled supremacy and eugenics, I do not have the energy to play along. It makes me sick. (Literally.)
This thread is fueled by rage at the policies and individuals that enabled my second bout with Covid. This time was worse than the first.
Each subsequent infection will be more unsustainable for my body.
My health should not be collateral to your barefaced pictures and restaurant meals.
Sorry for reposting, I realized that the thread would be more readable without the graphics that were initially part of it!
/end thread
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August 8: #SevereMEDay of Understanding and Remembrance
If you can imagine that mild ME is considered severe by other disease standards, the “living death” comparison for severe ME might be put into perspective.
25% of cases can be considered severe to very severe, ranging from a housebound existence to bedbound suffering with intolerance to any light, sound, cognitive exertion, or other stimulation.
Very severe ME can be deadly, as patients are too unwell to access preventative or emergency healthcare, communicate their needs, and/or feed themselves. Common causes of death are heart failure, cancer, and malnutrition.
NOW ppl are scrambling to get masks and CR boxes because they can 👀see and 🐽smell the danger?? But if the hazard is invisible/odorless it doesn’t matter?
We told you…Covid moves like smoke.
Also, Covid stays in the air for longer because of the smoke. And the smoke is likely to make respiratory infections worse.
We told you there are many benefits to air hygiene, including adapting to the climate crisis.
I’m equally concerned and frustrated lol
Might delete this later but I hate how reactive we tend to be in the face of crisis. Most (healthy) people are not prepared for disasters.
This is the video that I made on Blue Sunday to promote the virtual conversation at Reservoir, my religious organization, last month! I speak about being a pwME, and its connections to Long Covid, the pandemic, and disability justice. 1/6
Context: Reservoir has two separate services, one in-person, and one that is fully virtual, which streams on YouTube from onsite. I am glad to remain a part of this community despite having moved out of Greater Boston and to have served on their REDI team these last two years. 2
However, I was concerned that in-person events and services do not have universal masking. Especially on behalf of very young children who cannot mask, and local shielders who are excluded by this policy. Thankfully, my request was taken seriously and I was able to organize /3
Tonight I hosted a virtual conversation at the Reservoir community, the first of its kind to talk about the ongoing impact of the pandemic on mental health and well-being.
I loved holding space for everyone and receiving shielders’ and long haulers’ stories. 1/9
Emotionally, I am regulated enough for this work and it’s meaningful to me. Even when talking about grief, trauma, and discrimination. I do have the “counselor” personality type, after all. Maybe it’s a calling… 2/9
But physically? I crashed very quickly after. To make up for 1.5 hours of “light” exertion sitting and talking in bed, it’s over 3 hours later and I’m still not feeling well. Idk how long I need to “pay it off.” PEM is a mean debt collector. 3/9
When I was getting into public health a couple years ago , I wasn’t focused so much on Covid because I thought there were tons of people joining the field for that reason. I thought there would be a new generation of the workforce interested in tackling the pandemic. 1/5
Basically, I assumed the renewed interest in my field would mean a stronger response to the continued spread of disease. I thought I could focus my interests on the inequitable mental health outcomes in QT/BIPOC populations. 2/5
I never thought wearing a mask could become so controversial, and that so many of my peers would “step down” from protecting the most vulnerable people affected by a deadly and disabling virus. #CovidIsNotOver 3/5
Practicing a Love Ethic in the Ongoing Pandemic by @itsjiyounkim
“To continue to practice disability solidarity is to be in continual grief and rage and face immense social loss…requires a confrontation of the impermanence and precarity of abledness.” itsjiyounkim.com/blog/love-ethi…
Part 2 “A crucial part of liberatory work is to embody the world that we want to co-create in our own communities before that world is tangible in its fullness on larger, more systemic levels.“ itsjiyounkim.com/blog/love-ethi…
“Ideally, I would love to live in a world where we don’t need to rely on mandates because we proactively choose to keep each other safe.”