DJD with Jay In-Bed Activism and Desiring Liberation- Being Chronically ill, severely disabled and ALWAYS Exhausted

Note: The lowercase "i" in this piece is intentional until the very end, to highlight the shame I feel when resting.

In all honesty, i have been spending a lot more time in bed than i would like to admit and i feel lousy about it. i am choosing to talk about my feelings associated with being in bed and resting here because i know i am not the only one who experiences such feelings. Feelings that we are not productive enough when we are resting, not worthy enough to rest and many other narratives we have pushed on us as disabled, chronically ill, pain-filled, exhausted and marginalized folks. These narratives often include disabled folks being told that we are “too lazy” or “too much of a drain on the economy” because our body-minds cannot work the amount needed (day in and day out) to sufficiently feed the ferocious lion known as Capitalism. 

This lion rules the world and all systems within it. It is a scary, racist, prison- producing, energy-sucking and ableist creature which preys on every individual, specifically the most vulnerable populations. Capitalism feeds off us over and over again and if we are lucky, we will be left with our skeletons mostly intact and if not,  we will cease to exist. Once our bodies cannot withstand exploitation any longer, we no longer have value! This is why i actively chose to rest. Even when i feel lousy about it. And especially when i feel like i need to be “more productive.”

As a black, disabled, queer, neurodivergent individual, my body-mind will never be enough to satisfy this creature we are held captive by, so why should i [or we] even try?

Disabled folks have been practicing and living through the practices of Bed Activism. This form of activism is exactly as it sounds. It is work and community building from our beds. So many of us exist in Bed Space Activism without even knowing that we do. For instance, cuddling in bed with friends/family is a  form of activism and an example of collective care. Reading books by disabled authors, who have written from beds, couches, wheelchairs, and/or the ground is activism.

From my personal discoveries of activism, activist spaces, and in “doing the work”,  i know every form of activism looks and feels different to everyone. To me, this form of activism looks like sitting in my hospital bed, tilted up right, my laptop balancing on my knees, covered in cozy blankets, as large rain droplets hit my window. During this time, i meditate as i listen to other activists talk about the importance of liberation, community and rest. My eyes feel heavy through the hum of their voices, but i do not fall asleep. 

i hate naps. So i chose not to nap. i strongly encourage you to take naps, if that works for your body-mind.

As Tricia Hersey states in her transformative book Rest Is Resistance: A Manifesto (2022):

This work [rest work] is a battle cry for being sick and tired of capitalism and white supremacy. A resting place. An alternative and temporary space of joy and freedom. (Hersey 11)

I could not agree more.

My bed is a space of creativity, rest, sleep, joy and love. I choose to reimagine the bed as more than a physical artifact, but as a portal to new worlds and vibrant disabled futures. I hope you will too. I am still an activist, no matter where I fight from. I still deserve rest, no matter where I take it, and so do you. I do not have to do anything to be worthy of rest and neither do you. Whether you rest in bed, on the couch, in your mobility aid(s), in a prison cell or on the ground- You are worth resting for and it is a privilege to rest with you.

Until next time, keep rolling, growing, stimming, moving, shaking, resting, resisting and loving.

Jay Baldwin xx

(they/them) 

A picture of Jay, all cozy in their hospital bed and smiling. Their eyes are almost completely shut and they are holding a stuffed cow tightly.

Bibliography

1. Hersey, Tricia. 2022. Rest Is Resistance: A Manifesto. Little, Brown Spark.

(This book is so worth the read!!!!)

Check out this talk from some amazing activists, who are fiercely doing this work:

2. UIC Institute for the Humanities. 2022. “The Reciprocal Politics of Bed Space Activism: Creative Resistance and Radical World Making.” YouTube. October 18, 2022. https://www.youtube.com/watch?v=yHO26DZAqUI.