We may be in bed, but we will not be silenced [from substack]
Introduction
In 2022 I experienced my first COVID infection. Since then, I have lost my ability to walk, talk, and sit up for prolonged amounts of time. It has been a terrible experience. I got COVID because I relaxed my outdoor precautions. I was told by the government that we didn’t need to mask all the time, that hand hygiene as well as six feet of space would be just fine. The vaccine was our savior. If that didn’t work it was important to remember that COVID was just like the flu, so I’d recover okay. Although I have always been skeptical about the government broadly, I trusted in the federal public health infrastructure to relay essential and truthful information about COVID, and I trusted many of my healthcare worker friends to do the same. Of course, I realize now the consequences of disillusionment. In my anxiety and confusion about the pandemic I simply grasped on to what the federal leadership was saying without thinking too critically about it. I wanted things to go back to being comfortable. I’ve never regretted anything more in my life.
I cannot properly convey through words how much the US public health infrastructure has failed us so miserably when it comes to COVID. And although the images below illustrate just one arm of this failure, it is one that is shared by agencies like the NIH and the FDA as well as congress, local governments, policymakers, healthcare administrators, and yes even us as a people.
Bedbound activists are still activists
Despite this, one thing that I am grateful for experiencing through this tumultuous long Covid journey is being connected to the disability community. I have had the opportunity to more deeply connect with disability justice as praxis. I started an initiative through my llc that focuses on the most marginalized members of our Myalgic Encephalomyelitis and long hauler community. I received seed funding for a Black and Indigenous people with Myalgic Encephalomyelitis arts project. And I’ve been able to join spaces like ME Action and Patient Led Research Collab. Our community may be severely disabled, but we are so incredibly knowledgeable and passionate.
One thing I’ve realized however, is that the broader disability (and other activist communities) community often disregards and leaves behind those with severe Myalgic Encephalomyelitis or severely energy limiting conditions. This has always been an issue to me but it became obvious after the election in which critical calls to action came off as impossible and sometimes ableist for those who could not keep up. This was unfortunate because the people I know who are stuck in bed or in their homes are some of the most insightful and deeply passionate about justice. People I know across the globe like Mlindeni in South Africa, Himmat in India, María in Mexico, Hazie in Canada, and stateside friends Julie, Catherine, Isa, Wilhelmina and Marisa. But every single call I’ve been on since the election has included several very sick people wondering if they could be considered an activist, how to get rid of the guilt of not being able to take it to the streets, and how to get involved in activism from bed with limited fuel. And to most of this I say f what people say about any bedbound persons ability to be involved. F the urge to conflate urgency with rushed and non-inclusive movements.
In a recent article submission I wrote:
“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 mind-body point of reference, I am reminded that we can and must take our time. We must take up time. We must reclaim time.”
And so I say this to say our movement spaces can and must make room for bedbound and energy limited people to contribute and lead projects. It is vital to build relationships with the energy-limited. We can plan strikes and rest oriented actions. We can use different forms of technology to get our word out. And we will.
#F*ckDenialism Campaign & Projection Art
In this past week I was finally able to get in touch with projection artist and solar punk novelist AE Marling who I am a huge fan of. He was able and willing to work with me and our ETC community members in getting a message projected onto the federal building in San Francisco. I asked friends and the community what they wanted to say and what hashtags to use, and provided them to Marling . This was the result.
[ID: #CureLongCOVID COVID made me sick but CDC ruined my life is projected onto the speaker Nancy Pelosi Federal Building in San Francisco. A cop car is in front on the street. It’s night time]
There were several responses and the hashtags included: #FuckDenialism #CureLongCovid #CureLongCovidNow #20MillionSick #ZeroTreatments #MaskUp #InactionIsKillingUs.
I love the poetic irony of this art, particularly with the cops in front. It’s a reminder that we are five years into the pandemic with even less protection and less funding for research, and yet more war, more police, more facism. Cue Tupac’s “Keep ya head up”. We are deep in denialism’s trenches. We are deep in horror.
I appreciate that Marling chose the community members statement about the CDC. To be absolutely clear, this is not a phrase to uplift some anti vaxx rhetoric. It’s a statement that calls to attention what Simoes and Jackson-Thompson stated in their 2022 article about institutional failures:
In the COVID-19 epidemic that started in the winter of 2019–2020, CDC and the network of state and local health agencies failed to protect the US population’s health due to inaction or ineffective actions before and during the epidemic”.
They add,
This system’s weaknesses and partial failures appear to have contributed to a less than effective management of the COVID-19 epidemic, resulting in over 76.4 million cases, 4.4 million new hospitalizations (August 01, 2020 – February 05, 2022) and 900,000 deaths in the US between January 1, 2020, and February 05, 2022.”
As I pointed out above we have been utterly failed. Worse, it calls into question a long history of extractive and organized abandonment that continues to be perpetuated through federal public health agency infrastructure. But nothing is inevitable and it is not too late to demand each other and government agencies to get their crap together. We must. It’s imperative. I want my people to survive.
I would write more but I’m out of fuel. I wanted to just take this time to thank my ETC community and Marling for helping us get our voices out. I hope that this is just one of the many actions we can make happen from our various bed geographies.
With care and love!
Vee