Thoughts on COVID19 and Purim: Turn this world upside down
Will now be the time when those who know what we know, and who know what we need, get listened to or get seen?
On Saturday, we held a video/audio gathering called a webinar (COVID-19/Coronavirus Preparation for People with Chronic Illness) on a week’s or so notice.
The full webinar video and transcript ( plus a full set of tips/wisdom and questions we collected through the registration form, slides and chatroom) will be posted in the next day or two. If you want to be sure to get it and become a part of this effort, you can register here. And here’s where you can donate to our costs.
Here’s some of what I talked about in the gathering (lightly-edited from the transcript).
Thank you for taking some time to sit with yourself with where you are right now, and to everyone who's brought us this far in our time together today.
My name's JD Davids, and I'm just gonna share for a few minutes my thoughts on how we know what we know, and we know what we need.
Right now is a very big part of my ritual year because it's Purim, which is a Jewish holiday that's carnivalian and about the world turning upside down and being topsy turvy.
There's always something being topsy turvy.
And what's been interesting, being in a Purim ritual space as a queer living with chronic illnesses, is that when the world turns upside down, maybe that’s when those who know what we know, and who know what we need, get listened to or get seen.
[Image description and caption: Me at a Purim past, wearing one long black leather trigger glove, a bunch of makeup and a wicked smile, a small black vest, and a purple black and red round fabric-covered board behind my back and head, a red velour crocheted small skirt held up by slightly-visible leather and metal suspenders, and holding a round shield with a 3D white face surrounded by orange/red fabric and gold border. Cropped from photo by the fantastic Minister Erik McGregor: @minstererik]
Last night, I dreamed about two of my HIV activist ancestors. I'd like to say hello to Jon Paul Hammond and Kiyoshi Kuromiya, and talk about the knowledge they brought into my life very quickly. Jon Paul, bringing the practice of what we now call pleasure activism, with a really loud whooping call at dance parties.
[image description: Jon Paul Hammond is shouting at a demonstration. You can see his face and upper chest; he’s wearing sunglasses and a white tank top. The DEAT letters of the SILENCE=DEATH logo is visible on a sign behind his head.]
And Kiyoshi Kuromiya, by understanding that we work wherever we are, we work in the ways that we work, and that we always can bring whatever we bring, in order to work together on what we need.
[image description: Kiyoshi Kuromiya sits in front of a computer monitor and keyboard, in the early 1990s. He is looking at the camera with one arm resting in front of the keyboard and the other on his knee close to the camera. He’s wearing a dark button up shirt and light colored pants and his long hair is tied back. Photographer unknown, from the article The Kuromiyas of Monrovia: A Family of Unsung Heroes, credited to Philly.com ]
For years and years in the HIV pandemic, there was no central standard of care for medical care in HIV disease. So ACT UP Philadelphia did 13 editions of a Standard of Care. And we published it. It was in English and Spanish, and it was a four-page document.
It was something that people could take with them to their medical providers, take with them to their appointments, and say, “Here's what I know I know. And here's what I know I need.”
And that has been the lesson I've taken with me since those times.
But now I just want to ask what I'm afraid I already know the answer to:
How many articles, how many mainstream news stories, how many TV reports have any of us seen in the last couple weeks or last month that have asked or talked to, featured, or quoted the real experts in what they're talking about right now?
How many have talked to people who live in their beds about how to live in the bed?
How many people, how many reports have talked to people who live at home about how to thrive living at home?
How many people have been talked to, or given space and a broadcast mic to talk about what they do to stay healthy when the circumstances of their living situation are not under their own control?
The people who have been living with a pandemic of marginalization, disregard, or neglect for much of their lives or their whole lives are the people who have the expertise we need today, and that could help the rest of the world, yet continue to be disregarded.
I identify as a illder, which is a word I think I made up.
That has to do with being an elder maybe faster than I would've been otherwise, who has learned some things by living with chronic illness. And I am [pause] always grateful for the disability justice movement and its model of crip wisdom that insists on what I'm saying now, and has been bringing people together who are the leaders in living as themselves, and that we collectively can demand to be regarded as the experts on what's going on today.
We're asking people, if you can, to contribute to a forum where we're continuing to collect your wisdom and experiences, and also to share the resources that you've found useful or that you've created and would like to get out there, and to continue to express your questions and concerns.