It’s time to honor the activists who motivate us

As we sit inside this post-election lull awaiting results, it seems like a great time to call out the champions who push for the values we embrace. For me, those values include compassion, fairness, free speech, and equitability.

In the introduction to my forthcoming book, I offered thanks to these diehard activists who have motivated or informed me in powerful ways. All hail the changemakers and the resisters!

Glenda Bailey-Mershon Picture

This queen has major street cred in the ERA movement (visit her website for all the details), and she’s a lovely writer, powerful speaker, and all-around beacon for women everywhere.

She was also a publisher of marginalized voices before it was ever a “thing.” I owe a lot of my wisdom as a writer, publisher, and feminist to Glenda.

Jen Culkin

Her book, A Final Arc of Sky, taught me so much about MS that when I was eventually diagnosed myself, I knew better than to believe it was a death sentence.

She recently retired from a lonnnnnnnnnnnnnnnnnnnng career as a healthcare professional, and she did a ton of hard stuff, including working as a Medevac EMT and as a critical care nurse.

Kelly Davio

If you need a better way to articulate your frustration with living inside an ableist culture, check out her finely wrought It’s Just Nerves. This is one I go back to again and again. (Left, photo by Adrianne Mathiowetz.)

Yvonne deSousa

Hey, if having a sense of humor is not an MS superpower, then what else is there? Yvonna gets it, I mean, she really gets it. Laughter is her shield and I’ve learned so much from her ability to mock the MonSter.

She’s a top MS blogger who you should follow right now.

Jeannine Hall Gailey Jeannine Hall Gailey (@webbish6) | Twitter

All-around cool girl with pink hair (at least currently!). She’s written some serious words about living with chronic and mental illness, but she’s also taken on mad science, the apocalypse, mythologies, and so much more that’s unexpected and speculative.

Jeannine is one of my favorite poets because she writes with a skewering relentlessness and an inclination toward the magical and otherworldly. Oh, and she knows a shit ton about popular culture and isn’t afraid to write about it!

Nicola Griffith

This woman captures so much possibility for all of us to ponder. She’s been through several rounds with hell and comes back sharper and wiser everything. You’ll love reading THE STORY OF MY PHD, PART 4: EXPERIENCE, in which she writes:

“While I was waiting to hear about my application to Anglia Ruskin as a PhD candidate, I came out as a cripple. I did my first deliberate public appearances in a wheelchair. I joined disability studies conversations on Twitter and Facebook. I founded, and co-host with Alice Wong, #CripLit, a regular Twitter chat for disabled writers. Before and during the process I was still working on Menewood, the enormous sequel to Hild. In addition I began a twice-weekly regimen of outpatient physical therapy, with daily home exercise, that rendered me useless for most of the day twice a week. There was no give in my schedule. Then I was accepted as a PhD candidate.1″

1 Right on top of my acceptance, politics happened. I’m not going to rehash Brexit except to say it hurt then and it hurts now to watch fools throw away something great and good based on greed and fear. And it was not long after this that I got a sick feeling that I knew what was coming with Trump. I felt oddly homeless. It got much worse after the election.

Tara Hardy

I read her book, My, My, My, My, My, in one sitting and was absolutely energized to finish my own book as a result. You absolutely must go see her read live (or maybe even now, in Zoom, if possible) so you can take in all that powerful, gritty energy.

In the absence of those options, click the pic to the right and watch her in a YouTube slam.

Charis HillCharis Hill

I’ve never met Charis, but their voice is a constant source of comfort, inspiration, and motivation in social media. Charis is a model with multiple chronic illnesses as well as the subject of an outstanding 2019 documentary, Becoming Incurable.

I think I’m most moved by the rawness in which they write about the daily challenges that come with trying to be a changemaker in a difficult world while trying to maintain critical self-care.

Alice Wong Photo of an Asian American woman in a power chair. She is wearing a blue shirt with a geometric pattern with orange, black, white, and yellow lines and cubes. She is wearing a mask over her nose attached to a gray tube and bright red lip color. She is smiling at the camera. Photo credit: Eddie Hernandez Photography

I started with a queen, I’ll end with a queen. (Who am I kidding? These folks are all queens, in my estimation.)

Alice is my new hero. She launched the Disability Visibility Project, which was supposed to be a small thing, but which grew into a gigantic thing that none of us can really live without.

I absolutely loved the book by the same name which she edited with amazing vision and finesse. It checks all the emotional, physical, and mental boxes surrounding discussions about living with chronic illness and/or disability. A great read for people in this community, but also for caregivers and people who need to learn how to be better allies.

Also, don’t miss the DV podcast!

We owe a debt of gratitude to this hard-working activist who strives to demarginalize, empower, and inspire in literally everything she does. You can credit her for launching the #CripTheVote hashtag and the movement that follows it now.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.