I virtually attended my first two MEAction events this month.
I have been following MEAction folks on twitter for a while, as I gradually learn more about the ME/CFS community and slowly accept my ME/CFS. Jaime Seltzer, shown above, is the Director of Sci and Med Outreach for MEAction. She is one of my favorite sources of info, updates, and awareness around postviral illness. So I asked if I could draw her, and she said yes.
I tuned into a MEAction AMA to make this drawing!
It was on zoom, and it was actually the first AMA I have ever joined. It was a great conversation, with Jaime and MEAction’s press person, Adrienne Tillman. I was in bad flare and not following all the time, but the thing I truly appreciated was that Jaime kept bringing her answers back to equity and community accessibility. So glad to have someone like her as an advocate!
The next event I attended was the MEAction Winter Virtual Artist Salon.
This was a complicated event for me, coming from queer political discourse and the larger disability justice sphere. The artists gathering were almost entirely white women my age. It’s very unusual for me to experience this kind of uniform crowd.
I guess I was upset by it, and then I had to go and put my foot in it. An artist was talking about the inspiration of Chuck Close adapting his artistic practice to his disability. I spat in the soup by commenting in the chat that Chuck Close is triggering for a lot of people because of his sexual predation and so he’s not really a disability role model.
My comment was politely ignored by the mods and the chat, although the OP who’d mentioned Close dm’d me and said yes, she did know about Chuck Close being a sexual predator and she hoped she hadn’t triggered me!
Nonetheless, I stuck around to talk about my work in the context of ME. It was the first time I told my ME story in any form, and the first time I said out loud that I *was* a painter, but am no longer physically able to paint. Since I can’t stand up or raise my arms, like the snowman!
So, it’s great to hear from PwME (People with ME) who share my experience of this illness.
It was deeply moving to hear other stories of dreams and skills lost to disability, and be in a video call where most people joined from bed.
However for me it’s really important to keep my focus on the larger disability community, and disability justice for all, with BIPOC folx and sex workers to the front.
My guiding star is Imani Barbarin, of Crutches and Spice, who I support on Patreon.
I really value the teachings of The Nap Ministry, which I also support on Patreon.
And I gotta lie down now.
What is ME?