Copeland, a disabled organizer and former policy analyst details their experience facing the lack of care in movement strategy around surviving the current administration
Trump won the presidential election.
And since last November, I have been engaging in meditations and group calls, checking in on my friends, and attempting to plot our next moves. But then I remembered my diseased body, or rather, it reminded me that it was here. So now I am sitting and writing and breathing. I have heard consistent advice over the past few months, and that advice has been two-fold. One is that we need to feel and process, whether that is rage, despair, anxiety, or sadness — maybe even adrenaline. And of course, for many this is seemingly normal advice. Feel the feels and then find a way to get back to “the work.” Let it fuel your work. Use that rage to fight back. The second piece of advice, or rather a call to action has been to meet with our communities and chart a way forward for the first 100 hours, first 100 days, and then the years to come under the next administration.
But for someone who now has a severe energy limiting disease called Myalgic Encephalomyelitis, this advice has not landed how it once did. In fact, some of it felt like it could be harmful if not impossible, and with this revelation has come feelings of frustration, guilt, and shame. What does it mean to “process”, “disengage”, and take care of our nervous systems with an energy limiting disease? For those of us who cannot leave our homes or beds, who do not have the privilege of being in nature and engaging in the other tips people are sharing about handling grief, how do we engage or disengage in this moment?
My friends with Myalgic Encephalomyelitis, and many with Long COVID, are crashing from the election news. Crashing, as in being physiologically impacted at a cellular level. Our mitochondria cannot keep up with growing facism. For some, these crashes may last for a few days. For others, these crashes could cause permanent damage. People with energy limiting diseases must constantly navigate how and when we cry, laugh, and engage in any other activity that increases our heart rates. Despite this, we continue to have a deep yearning and passion for justice, a desire to partake in the fight for our rights, and a true commitment to trampling the empire.
We are here trying to understand how to survive this tsunami of emotional distress. We are redefining what it means to organize and survive. We are here contending with grief.
In Healing Justice Lineages Alexis Pauline Gumbs writes,
Remember, when Harriet Tubman stopped and went to sleep in the middle of the journey because her head trauma induced narcolepsy, everyone else had to stop and rest and wait indefinitely. Maybe those unexpected pauses led to the eventual safe arrivals to come. What do you think will happen if you take a breath?
Remember. Harriet Tubman stopped. Went to sleep in the middle of the journey. She had narcolepsy. Everyone else stopped, rested, and waited. Indefinitely.
Unexpected pauses may lead to eventual safe arrivals.
What do you think will happen if you take a breath?
Or two.
Or three.
And continue breathing.
So I am breathing. Loosening my jaw. Relaxing my shoulders. Resisting the temptation of doom.
Grief is collective. Late-stage capitalism would have us spill our grief onto the floor in our corners of the world, isolated, all in one go and for the consumption of others. It would have us get right back to plotting, planning, scheming, and fighting as if grief is a fleeting emotional burden to overcome. It would have us live alone and die alone. Capitalism aims to hinder our imagination, and to relegate us to business as usual, and it seeps into our movement spaces — movement spaces that may not remember the significance of stopping, together, even for one person. And maybe indefinitely. As Alexis Pauline Gumbs posed, we have forgotten that pausing can be a passageway for safe arrival.
My friends and I with our sensitive mitochondria are discussing how important it is to hold each other during the spillage, trickling, and crashing of our grief. Grief, as relational and necessarily collective, requires us to remind each other that we are here together in our various bed geographies sharing the weight of the world. And though it may seem cliche, it matters that we remind each other of our shared hopes and shared love. It matters that we are connected and continue to show up for each other in the ways we can and do. It matters that we remind each other that our passion and yearning for justice, albeit from our beds, makes a difference and that we do not have to move at the pace of the world to fight against facism. Perhaps our need to proceed slowly will uncomfortably, yet thoroughly, contest everything others know about building sustainable movements. Perhaps in moving at our own speed, others will recognize their need to pause and breathe with us as well.
Sarah Jaffe in her book From the Ashes writes that grief is collective becoming. She states, “…collective mourning is necessary. Because it is an assertion of a different logic, one that says that these lives matter—that asserts their value over the value of profits”. I am so grateful for this offering to reconsider grief, and also the ways in which we organize. While everyone is coping with the election news at what seems like the speed of light to those of us with an energy-impaired mindbody point of reference, I am reminded that we can and must take our time. We must take up time. We must reclaim time.
There is no time limit for taking care of ourselves, sharing space, mourning, grieving, and otherwise commiserating. In fact, it may even be most beneficial to slow to a snail’s pace so that we can realign, sleep, reclaim peace and homeostasis and prevent more premature death. I believe that this refusal through time manipulation is a direct contestation of facism and capitalism. What happens when breath reveals a different more sustainable path to liberation?
Yesterday I joined an amazing energizing call that included speakers from progressive organizations across the country. There was an acknowledgment of our grief and rage, calls to action, and a celebration of our wins. And honestly it was beautiful. We were asked to sign up to host a community meeting and of course I signed up with excitement and interest. The sign up came with a toolkit and instructions. Some of the advised accommodations included accessible restrooms, wheelchair ramps, live captioning, and ASL interpretation. The facilitation toolkit then laid out the following options for the meeting: option one was a two and a half hour meeting without breaks, option two was two meetings a week apart with both being one to two hours each. The meetings were to include space to hold feelings, space to plot, and activities like mapping, diagramming, and potentially onboarding. I immediately closed the document. This is not to say that any of these recommendations are wrong or that this was not a necessary, beautiful, and commendable mass call to action. But for myself and many others, it can be disheartening to see a lack of energy-preserving accommodations and a lack of tips on how to convene while severely disabled.
Being disabled in this way has unraveled all of what I thought I knew about how we commune, organize, and hold space. That is a good thing. Some of my friends can only look at a screen for five minutes, others spend twenty-two hours of the day in complete darkness. Our calls to action can benefit from thinking outside of the box, and in doing so, I believe we can firmly move towards more sustainable life-preserving movement spaces.
I closed the door on that initiative not because it was unimportant, but because for people like me our process will be different. And that is okay. Maybe different is what we all need. Maybe our most immediate call to action is to learn how to honor each other by slowing down and breathing — to just grieve for now, or for however long it takes. To collectively find new ways to avoid crashing by pausing together, even when it goes against our gut reaction to do and do at once. It may be time to commit to incorporating pauses, to think about how to pause while taking action, and to even become curious about plotting action through the pauses.
This time manipulation of resting, pausing, grieving, and re-organizing will rely on our community and others to support us and dream with us. In his piece Rest is not Resistance, and that is ok Trey Williams confronted the notion that rest is solely an individual choice. Williams describes his own journey with grief and rest through the loss of his grandmother and offered this reflection,
I wanted to tell them that any self care and rest that my Grandmother received during her fight with Cancer was not simply because she chose it, but because my family coalesced around her to make that choice a possibility—in the absence of robust social safety nets for aging and disabled people.
This quote has resonated with me, as I know it will with many others. People with energy limiting disorders need others to show up for and with us, so that we can be supported in grieving. We need people to show up so that our mitochondria and nervous systems can function. “Showing up” can mean sitting in the corner of a room quietly with us, hosting free meditation sessions, sending pictures and text messages slowly over days and weeks, donating funds to take other stressful or energy-inducing things off our plates, or temporarily able-bodied allies committing to showing up to organize with us and meaning it. We have to consider and dream up other ways to show up for each other. The time is now.
So right now, I am resting and breathing and grieving. Our societal urge right now is to act, to let our rage carry us into the next four years. I believe we need to act, that we face urgent and dire challenges. I do not believe rage or rushing past grief is sustainable for the current and coming fight. So I write this hoping you will join the millions of us who are surviving, organizing, and fighting from our beds. Take time to take care of yourselves and others. Think outside of the box. Grieve collectively and maybe even slowly, as slow as we need to. Remember, hope, and rest. A lot can happen when we take a breath.
