Pandemics are Chronic! A Statement of Commitment to Long COVID Justice
In the third year of the global pandemic, we must end practices and policies that ignore, marginalize and deprioritize chronically-ill and disabled people
Hey all -
It’s been a strange and busy time, in which I’ve been alternating between dogged persistence and dizzying despair. How are you doing?
A few assists for understanding the moment we’re in:
The Urgency of Equity toolkit, which debunks the common and damaging non-facts about kids, COVID-19, schools, masks and more — and at the link you’ll also find the link to the Spanish language version.
My comrade Hannah Davis of Patient-Led Research Collaborative also offers some actual data and clear perspective in a Twitter thread, noting “There's a big reality gap right now between people who are actively staying on top of COVID research & those who just trust the current guidelines. There's no judgment here, but I'd like to try to communicate the worldview of the former based on what we know about COVID now.”
And another explainer thread from Dr. David Holtgrave, about why he’s not trusting in the CDC’s new guidelines for when/where masks are needed (his spoiler alert: he’s still masking):
I’m encouraged by the news that artist, filmmaker and educator Kat Cheairs is opening the Makeda School for Art, Media and Humanities — she describes it as an “online platform offering high quality virtual classes, workshops, screenings, seminars and special events for diverse audiences … in the tradition of the freedom school and progressive education model as an opportunity to nurture community engagement through the shared practice of learning around a particular set of ideas.”
If you can, please join me in donating to this vital project for digital intimacy And much gratitude to Kat for bringing me this news in a 5 am sleepless newsletter that also reminded me how to breathe.
As far as what’s spinning around in my mind at those early morning hours… There’s an essay working itself out in my head right now which is about “It’s not FOMO, which feels like it trivializes the intentionality of ableist policies of isolation and marginalization. Missing out is real, and so is fear.”
But that piece is still cooking, and in the meantime: I’m really proud to say that the new National Network for Long COVID Justice, where I’ve been spending a lot of time, has released an important statement:
Image description: A black background with yellow bars at the top and left side. Text on the image says "Commit to Long Covid Justice. Pandemics are chronic. Sign the pledge. Visit TinyURL.com/PandemicsAreChronic or follow the link in our bio to read the full pledge and sign. @LongCovidJustice.
Our National Network for Long COVID Justice has released Pandemics Are Chronic: A Statement of Commitment to Long COVID Justice as a sign-on pledge to end practices and policies that ignore, marginalize and deprioritize chronically-ill and disabled people.
As the third year of the COVID-19 pandemic approached, disabled and chronically-ill people -- including millions now living with Long COVID -- remained sidelined from the narrative. Disabled and chronically-ill people have been treated as expendable in past pandemics and as this one approached. We were disregarded in the design and application of public policies that prioritize market considerations over those most at risk of severe or fatal COVID-19, including the often ignored consequences of an overburdened healthcare system. We were othered in the language of prevention, treatment, and recovery.
This is not an aberration. This is by design.
It is an extension of the ways that disabled and chronically-ill people are considered, and not considered, in policy, medicine, education, the media, and other public systems. Now, Long COVID is getting more play, under the damaging notion that we're "learning to live" with the pandemic. We know that normal never was for many of us, and refuse illusionary new or next normals that perpetuate injustice.
Even as we build the movement, and even as we struggle greatly in this moment, we -- as people with Long COVID -- need to repudiate branding strategies that mark us as more deserving victims under the competitive rules of disaster capitalism. We are here for disability justice, for everyone.
So what does this pledge include?
As we saw with HIV/AIDS, disease outbreaks expose the need for large-scale change in healthcare, public health, and other unjust structures. Yet even as the pandemic continues to claim lives, we are pressured to return to a “business as normal” that has never centered the needs of disabled and chronically ill people.
So we’re asking everyone to pledge to:
include Long COVID in the narrative of the COVID-19 pandemic; we cannot tell the story of COVID without discussing Long COVID.
center, platform, and resource those with Long COVID, complex chronic illnesses, and other disabilities at the forefront of policy, advocacy, and action related to these issues.
work to end the marginalization of disabled and chronically-ill people, which is a constant and widespread harm, existing outside of and across all aspects of pandemics, and
recognize that the COVID-19 pandemic and Long COVID have disproportionately impacted already marginalized communities, including Black, Brown, and Indigenous communities.
We are experiencing a mass disabling event, and disabled people and those with Long COVID must be at the forefront of addressing this unprecedented moment.
If you can join me in supporting this statement, you can find the full text and endorsement form at the this short link: tinyURL.com/PandemicsAre Chronic. Please do.