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How Do We Gather Safely As COVID Persists? A brief guide for you and your groups
with a little update about what I've been up to since I last posted.
A lot has happened since I last reached out as I prepared for civil disobedience at MEAction’s Millions Missing Action at the White House in September! So after I introduce you to our new tool for spurring conversations on inclusion as COVID persists, read on for some quick updates about what’s kept me busy lately…
Here’s what I’m eager to get into your digital world today:
Practicing COVID Inclusion in the Time of COVID
S4HI has joined up with What Would an HIV Doula Do to release this brief guide for gatherings and call for disability solidarity, on Instagram and our website in English and in Spanish.
As we explain:
Practicing inclusion during COVID-19 means acknowledging the health and safety needs of all people, then taking steps to communicate and provide safe(r) and more accessible options for gathering. This includes not only working to understand the reasons spaces may be inaccessible to individuals with varying needs, but also committing to following community-centered practices to improve safety for all. Creating inclusive gatherings rooted in disability solidarity makes our movements and communities more powerful.
With the rampant disregard for our lives shown by gatherings like the 2023 Creating Change conference, it’s clear that we need to explain to our own communities why a “you do you” libertarian approach to our lives isn’t liberatory for anyone. We hope this brief guide — backed by more in-depth and hard hitting resources linked at the end — will help us all further these hard, important conversations.
We’ll have a discussion guide and social media toolkit soon, but we don’t want to wait any longer to get this out there! Here’s a starter tweet and Facebook post.
If you put these tools to use, please let us know - and keep sharing resources we can get to more people who need them. And if you sign up for a free subscription to this newsletter, we can talk about it in the chat - it’s my first time for launching a Substack chat, so let’s see how it goes.
What I’ve been up to since September:
I’m now officially working full-time with Strategies for High Impact (S4HI), which Gabriel San Emeterio and I co-founded last year to sustain and expand strategic communications, organizing and policy work to build the power of chronically-ill and disabled people. Scroll down to learn about some of what we’re up to!
And along the way, I’ve had another run with COVID, followed up with RSV, despite a whole lot of isolation and precautions. These times aren’t easy.
But I will say that Paxlovid was a game-changer, and I believe it should be made available to anyone who wants it — with COVID symptoms or test results, or Long COVID — completely free, worldwide, and with opportunity to take it for longer than the current 5 days that creates risk of rebound for far more people than in the original trials. Trials of Paxlovid in people with Long COVID are looking at a 15-day course; I was able to use it for a 7.5 day stretch, because I was able to get some extra from a friend who unfortunately had bad side effects.
And by day 3 of COVID symptoms, I felt BETTER than I usually do. I went on to three weeks of blissfully-lessened Long COVID and ME/CFS symptoms (little to no fatigue or pain), though it didn’t seem to alter my mast cell activation syndrome (MCAS) symptoms. And then things crept back to baseline. I may do it again, even without reinfection… It was incredible to feel what it feels like to not have fatigue, and to see it was possible, if not prolonged (yet!)
Updates on Strategies for High Impact:
We’re also furthering projects bridging HIV, COVID and disability justice and insisting that chronically-ill and disabled people are centered in and beyond pandemics.
We have also initiated a project for fellowships for Black, Brown and Indigenous people who have Long COVID or other complex chronic conditions — stay tuned for a fantastic interview with our first fellow, coming soon!
With the generous support of the Balvi Fund, we are diving into a comprehensive communications project on COVID and Long COVID! We will draw attention to evidence-based solutions and inspire public trust and investment, foster conditions needed to scale up measures to address the acute and chronic facets of COVID-19, and arm the global community to prevent future pandemics. The project will also create, collect and distribute accessible, accurate and timely information and support for people living with long COVID and associated diseases (LCAD) ourselves.
And this just in! We’ve been selected by Humanities Without Walls to collaborate with History Moves, a radical public history project at University of Illinois/Chicago on “Listening for the Long Haul: A Living History of Long COVID” to produce a multifaceted community-centered history of Long COVID, centering Black, Brown and Indigenous people. We’ll be using oral histories collected by Long COVID Justice members to show the need for public policies that are more responsive to individual and community needs in the face of pandemics and mass-disabling events, and that, in the process would make us all healthier and more resilient.
With all this going on, it’s probably best not to count on this Cranky Queer keeping you up to date - so please join our action lists to get updates, and to learn how to take action on the policies we need:
Strategies for High Impact: tinyurl.com/joinS4HI
Long COVID Justice: https://actionnetwork.org/forms/join-the-network-for-long-covid-justice
Long COVID Justice NYC: https://actionnetwork.org/forms/long-covid-justice-nyc/