IN THIS ISSUE, we gather a selection of writers and artists whose experiences broaden our understanding of sickness and disability, to foster a conversation among them about how the body informs our perception of and engagement with our surroundings. In “Age of Disability,” Sunaura Taylor follows a community threatened by toxic groundwater that fights ecological ableism. In “The Long View,” Sarah Capdeville faces autoimmunity and an ecosystem caught in chaos. Taylor Brorby lives with diabetes in the era of climate crisis in “In Range.” Marina Tsaplina tells the story of Dream Puppet, the poetic knowledges of ancient forests and disabled communities. Glenis Redmond writes about labor, lineage, and cancer. In “Retriever of Souls,” Amy Irvine’s daughter Ruby McHarg and her service dog navigate a forest of epilepsy. Enjoy columns by Lisa Wells, Meera Subramanian, Aimee Nezhukumatathil, and more. This issue is art directed by Georgina Kleege, a blind scholar who has consulted the Met and the Tate on access and equity.Purchase
I SENSE A DISTURBANCE IN THE AIR. My chest feels tighter; something is not quite right . . . and then I see it. I remember it. I am a time-traveling disabled oracle.
From Northern California to the Mission District in San Francisco, the sky turned dusky red on September 9 last year as wildfires blazed. Sheltered at home, I couldn’t completely seal myself from the smoke or other microscopic dangers no matter how hard I tried. I can sense a wildfire coming before most people because of how my respiratory system is built. My diaphragm, which is slowly weakening over time, gives me a heightened sensitivity to secrets in the air . . .
Because my diaphragm is weak, I use a ventilator to help push the air out of my lungs. Without this machine, my own CO2 would gather in my body and I would die slowly from a buildup of acidic blood. This nearly happened when I was 18 and first experienced respiratory failure. My brain went fuzzy and in the ER I remember seeing my arterial blood drawn from my body, starved of oxygen. Thick and black as ink.
I think about breath a lot.
Breath is more than an exchange of oxygen in, carbon dioxide out. It is mechanical, fundamental, and profound. Life is precarious and those who face the dangers intimately are the ones sounding alarms about the past, present, and future state. Disabled people like me, for example.
When the coronavirus pandemic broke out, many states decided that, because I need this machine to breathe, I am less deserving of medical treatment, of being saved. New York’s Ventilator Allocation Guidelines allow hospitals to reallocate people’s personal ventilators—that is, steal, from people seeking acute care during times of triage, giving them to people they think are more likely to live. Last October, a group of civil and disability rights organizations filed a class action lawsuit against New York, challenging these discriminatory guidelines and requesting a change in language. The fact that guidelines like this exist across the country shows how many disabled people are seen as high risks with low benefits to society.
Life is precious, but life is also easily rendered disposable and invisible. Breathing easily without fear is a privilege.
My body you call broken, I call an oracle.
And I am telling you . . . just slow the fuck down and rethink what you take in and release to the world.
For those of us who get to survive the pandemic, this is the time to value access and interdependence. It’s time to question why we place such value on productivity and speed.
It’s time to listen to the oracles among us.”
(This story first appeared in “Breath,” an episode from Radiolab.)