Tag Archives: disability rights

Showing up in the MEAction community as an artist and a chronically ill person.

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Jaime Seltzer of MEAction Dec 6 2021 by Suzanne ForbesI 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?

 

My Fantasy Wheelchair, Part 2!

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My Fantasy Wheelchair Version 2 by Suzanne Forbes July 6 2021This is the wheelchair I need for the goth club.

And the picnic in the park, and the life drawing salon in the old mansion with no elevator. Rideable, stair-climbing wheelchairs are an absolutely necessary part of the future.

Probably this one should have a cup holder for the disgusting Red Bull (tastes like carcinogenic Gummi Bears! and I always get the diet kind cause it tastes even worse!) that I like to drink when I draw at a nightclub.

My Fantasy Wheelchair by Suzanne Forbes June 20 2021 detail 1Since it’s Disability Pride Month, I thought I’d share some info on my personal disability sich, at this moment.

Several loved ones have asked, what exactly is my disability deal?

I’m an out disabled person, and you can always ask me about my limitations and conditions. But that applies to me only, just this one disabled person who is me 🙂

Well, official diagnoses: Hashimoto’s disease, asthma, C-PTSD, PTSD, OCD, lifelong severe depression (in total remission the last eight years!!), a rare circadian rhythm disorder called DSPS, “medical obesity” and bum knees. Unofficial: crippling fatigue, dizziness, vertigo and a fair amount of muscular pain, caused by some kind of ME/CFS, fibromyalgia, ME or lupus. Working on that diagnosis situation.

But what really makes my daily life challenging?  Dynamic Disability, a term coined by Brianne Benness on twitter. Benness is also creator of the NEISVoid, a vibrant disability community formed around the NEISVoid hashtag. You can read/hear voices from the Void on NoEndInSight.co. and support Brianne’s Void work on Patreon.

What Dynamic Disability means is that my capacity to function fluctuates.

I have good days and bad days, and sometimes both in batches. On the bad days, I sleep 20 hours. On the good days, I can unload the dishwasher and load the washer, the same day.

And work on art!!!

No matter what my condition is physically, I am fine spiritually and usually pretty good mentally, in the eight years since my remission from depression began.

The disability community has given me a way to understand and accept my limitations.

My Patrons on Patreon have given me a way to work and keep working in ways that are safe and manageable for me. I look forward to increased mobility and support as assistive technology develops. Fantasy wheelchair version one is here.

I’m glad to be alive and happy to be here, Disabled and Proud!

I am incredibly grateful to my Patreon Patrons, whose monthly financial support makes it possible for me to continue making art as a disabled person.