A few years ago, when I was just beginning my plunge into the world of diagnoses and drastic life changes, I saw the documentary Unrest by Jennifer Brea. Not only did the representation on screen feel incredible, but it moved me to action. I felt so empowered by this woman who could create so much change, without even being able to get out of bed! Jen became my ultimate hero. I listened to her interviews on Podcasts, watched her TED talk (check it out here), and joined her movement by planning and attending MEAction rallies. It donned on me how ridiculous it was to be planning a rally with a team of people who were too sick to attend! We would get excited, throw ourselves into the work, and then crash. This cycle continued and I honestly worried that we wouldn’t make it to the deadline of May 12th, the annual day for Millions Missing. And in fact, several of the incredible organizers were missing.
I just kept thinking, there’s got to be a way for those of us in the chronic illness and disability communities to speak out in ways that work for us.
In the years since, MEAction — Jennifer Brea’s organization, which runs Millions Missing, a day of international awareness rallies for ME (myalgic encephalomyelitis or chronic fatigue syndrome) — has worked to address this very issue. From the start, they would show the vastness of the millions of people missing from life due to ME by laying their shoes in place of the participants who couldn’t be there in person. They also supported anyone who wanted to show up but couldn’t stand up, encouraging wheelchairs or even laying down to protest. Their virtual campaigns allowed for even more spoon-friendly engagement. Mighty Well created the Mighty Pack, so that activists with feeding tubes, PICC lines, or loads of other medical equipment could stay safe and well-stocked when out in the fight (it’s even wheel-chair friendly!). Other organizations like Suffering the Silence have taken up this mantle as well (check out Marching With Me!).
In 2018, Jen Brea was unable to attend her own rally in Los Angeles. Despite some health improvements, she crashed hard from the effort of planning, and was confined to bed on May 12. She chose to deliver her speech from her hotel bed, instead of a podium. Despite this sudden change, her message still reached so many of us, and in fact brought me to tears from my own couch.
So here we are in 2020, in the midst of a pandemic. Activists have been scrambling to figure out how to still make an impact. If you visit the MEAction website, however, it’s clear they’ve already had the answer: activism can happen even from your bed. They have provided all of the materials needed to join the movement and make your voice heard. Check it out here!
In honor of May 12, and the 5th annual Millions Missing international rallies, I urge you to think about what means most to you, and find a way to get involved without sacrificing your own needs. Your passions matter, and so do you.
