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Abled-Bodied Leftists Cannot Abandon Disabled Solidarity to “Move On” From COVID

There must be support for disabled activists who are doing lifesaving disabled activism, mutual aid and survival work.

Protestors lay down outside the White House to call attention to those suffering from Myalgic Encephalomyelitis and Long COVID on September 19, 2022, in Washington, D.C.

I have this book coming out. It’s about the disabled future, about how most of the world will be disabled soon, and how disabled people kept each other and other people alive during COVID. I have tour dates. They’re all online. Because COVID. Because COVID is still here. Because every week, 90 percent of the country is in high or substantial uncontrolled community transmission — the whole country is blood red on the Centers for Disease Control and Prevention (CDC) map. Because 400-500 people a day are still dying of COVID in the U.S., and long COVID is the third-most common neurological disorder. For all of these reasons, having in-person events would feel like inviting my disabled fan base to a slaughterhouse. I have every booster that exists, and I’m still immunocompromised and not hopping on 19 planes in a row.

Yet every time I post, people — radical people, “movement” people — say, “Oh see you in L.A./Atlanta/Chicago!” And I have to say, “All events are virtual. Remember that? Virtual events? The accessible kind, with CART (real time captioning, making events accessible to people with a variety of disabilities and neurodivergence) and American Sign Language (ASL)? How did you forget so quickly?”

I’ve started calling the time we live in “The Great Forgetting.” Some call it “The Great Gaslighting.” Both are true.

By these terms, I mean the immense, on-purpose effort by the state to throw down the memory hole the fact that the last two years of the pandemic happened. The CDC switching its easiest-to-find map from the accurate community transmission map to one that shows the whole country in (fake) happy low-risk green. Biden saying offhandedly that “the pandemic is over” even as thousands of people die every week and groups like Long COVID Justice and #MEAction organize — from bed and in die ins in front of the White House — demanding that the U.S. declare long COVID a public health emergency. The state is acting like a bad boyfriend, a gaslighting partner telling you that nothing you remember is real. That’s not new, but the intensity level has reached a new high.

It shouldn’t surprise me. Of course, the state hates disabled people, even now that there are so many more of us. Of course, federal, state and local governments for the most part don’t want to pay for guaranteed income or disability payments or paid care work or accommodations. They want us to die slowly so they can save money.

The powers that be also badly want us to forget that there was a moment — a long, two-year moment — when people felt that everything could be different, that revolutionary change was possible. Many disabled people noted that the pandemic made for a “cripping of the world” — where for perhaps the first time in a while, the world, gripped by a global pandemic, dwelled in disabled reality. Remember how, for a minute, so many forms of access disabled people had long fought for were here because abled people needed them? Remember virtual work, pandemic pay for frontline workers, online school, online events with captioning and ASL, teaching people how to freaking wash their hands and stay home when they were sick, the ability to reschedule an appointment or a plane ticket when you got sick and not get yelled at or charged a fee, and immunocompromised shopping hours? These waves of access, mixed with mass resistance in the streets and at home against anti-Black, white supremacist violence, made for a powerful-ass two years. If that kind of mass access, resistance and mutual aid could happen, revolutionary change could happen too. The state wants us to forget that.

The thing is, though, it’s not just the state. It’s been wild watching people who are ostensibly leftist say, We’re following the CDC guidelines, and drop masking, rapid testing and other safety requirements. Two years or more of rioting in the streets and suddenly, we’re doing what the government says we should do? One minute, we were masking; the next minute, you do you. One minute some abled people are experimenting with “WE keep US safe,” the next minute, every club in 2022 was like, “Masks encouraged but not required. You do you!”

By wild, I mean painful. By painful, I mean heartbreaking. By heartbreaking, I mean every disabled person I know is in a state of grief and shock since April, when many mask mandates in airlines, public transport and public life were abruptly dropped by federal and state governments in the U.S., as everyone else abandons solidarity to “move on.” One minute, a lot of people were masking during Omicron; the next minute, everyone was back to breathing on each other on the bus — and we weren’t safe anymore. We increasingly feel pushed out of public life, as events and spaces from urgent cares to ERs to conferences say, “Oh, we’re not doing virtual anymore.” We’re talking about it, but it feels like no one else is. And many of us feel incredibly alone in our grief, and in the disorientation of feeling like we’re the only ones stubbornly remembering.

Maybe I was naive. I thought many people, while hating the pandemic, liked some of the access features it brought it. I still think that. I also think that most people at heart must care about others and want us all to stay alive. But internalized ableism is real. A lot of people have had a brush with what it’s like to live a disabled life these last two years, and a lot of them want to forget it as quickly as possible. They’d rather expose themselves to all kinds of harm than continue to be disabled like us — mask, discuss risk, stay home, pass public policies for the safety of all. Unfortunately, this puts us all, but especially us, at risk. So many abled people — including abled members of the left; including abled queer, trans, Black, Indigenous and/or People of Color on the left — want to forget disability.

Sometimes forgetting is the only way people can find to survive. In the face of few to no mass public rituals or acknowledgment for the millions of people who died from COVID, combined with almost zero collective survival public health strategies, I understand that denial is many people’s only accessible survival strategy. What we face is completely overwhelming and brain-bending.

I wish I could pretend everything was fine, too, sometimes. But I lost a lot of people and I can’t forget their deaths, or what we all went through — and continue to go through. And I also have somehow made it through 2.5 years of pandemic as an immunocompromised disabled person without getting COVID, and I want to keep that winning streak.

People like to say survivors of sexual violence make up false memories. But it’s far more common for people who perpetuate abuse to make up a false reality where they did nothing wrong. It’s easier that way. They don’t ever have to face it. There’s a similar logic with The Great Forgetting. If the powers that be tell us nothing happened and nothing is happening forcefully enough, they can make it true. We will always have been at war with Eastasia.

I believe many people’s denial does not just stem from ableism, but also from the huge un-composted mass of collective grief we find ourselves in. There has been no mass public mourning, no Vietnam Veterans Memorial for everyone we lost to COVID. Millions of people are dead, and we have mourned privately; some of us haven’t been able to mourn in ways we need to — funerals, ceremonies — at all. Most of us have had to go back to work and suck it up, holding all our dead in our hearts. The beat goes on. We’re supposed to go shopping.

However, in the words of June Jordan, “We always have choices. And capitulation is only one of them.” And in the words of South African freedom struggle activists, as quoted by bell hooks, “Our struggle is a struggle of memory against forgetting.”

We, as disabled revolutionaries, are disabled memory keepers. And our refusal to forget, both our dead and the work of our survival, is part of our revolutionary work. We live in a world that always wants us dead, and wants to erase that we existed after they kill us. As disabled revolutionaries — particularly disabled, sick, Deaf, neurodivergent BIPOC — our refusal to forget our dead, our losses and our survival is an act of resistance.

And I know we will keep remembering — through speaking out stories, shouting out our dead, archiving our work, making accessible gatherings and protests and homes and communities no matter what.

But I also call on the abled left to not abandon us. We need each other to stay alive. You may be us, or may become us quite quickly. We are you. We are all each other’s beloved community. Disabled Korean organizer and writer Mia Mingus recently wrote, “Why doesn’t ‘We keep us safe’ apply to COVID and monkeypox?” It does. The last two and a half years — and our lives before and after this moment — prove to us that we are all we have to keep each other alive, cared for, loved and home.

I call on the not-primarily disabled Left to make good, lifegiving, disabled wisdom choices, to continue to insist on access that the past two years proved possible. You have the power to insist on masking, community safety strategies for COVID and virtually accessible events, and to invest in community care. There must be support for disabled activists continuing to do lifesaving disabled activism, mutual aid and survival work who are exhausted and need and deserve support.

Some troll on my Twitter the other day said, “No one’s gaslighting you- you can mask all you want.”

Many people are gaslighting all of us. And I want so much more than to be told, “Oh, if you don’t feel safe/ it’s not accessible, just stay home!” I want to live in the full world, like every disabled person. I want to be able to leave my apartment without fearing death, go to a party, have casual sex. I want to live in the world, not my safe immuno-bubble, for the rest of my life.

More than that, I want to finish what we started. I want us not to abandon the revolutionary dream some of us touched and made in 2020-2021 — of a world where community care, mutual aid for collective survival and a refusal to obey are not just possible, they make up the bones of the new world.

Many, many disabled people feel what a coalition of Chicago disability justice organizers wrote in their “Letter to the Chicago Party Scene” in April 2022:

We don’t want to return to normal. We want to dream and imagine a less ableist future where we listen to each other and take care of each other. We want to build spaces that work for everyone, and we want this for ourselves and for our future generations of queers…. We want to move slower and with intention. More people are becoming disabled every day, and we need Disability Justice dreams to hold us and guide us.

Join us. We can still make that other world that is possible, but only if we all do the work. Let’s not abandon the dream. Let’s make it happen.

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