Disabled people know what it means to be vulnerable and interdependent. We are modern-day oracles. It’s time people listened to us.
Even before the coronavirus pandemic, systems have always tried to kill and oppress marginalized people. Attempts to repeal the Affordable Care Act. Human gene editing. Wildfires in California. Voluntary power shutoffs by PG&E. Medicaid work requirements. Public charge rule. These crises and assaults reconfirm who is considered disposable and unworthy of assistance, resources, attention, and treatment. This time feels different for me with the very real threats of health care rationing and shortage of ventilators for critically ill patients in the United States.
I use a non-invasive form of ventilation called a Bi-Pap. My vent is part of my body–I cannot be without it for an hour at the most due to my neuromuscular disability. I have sleep apnea and cannot properly remove carbon dioxide from my body without the Bi-Pap which can lead to respiratory failure. I am so dependent on my ventilator that it is attached to my wheelchair where it draws continuous power from my chair’s battery–it is part of my cyborg being.
So many people see me and presume that I have a poor quality of life because I have a tube attached to my face and that I sound different. I refuse to allow the medical industrial complex reduce me to my comorbidities, risk factors, and inability to perform X number of activities of daily living.
I find strength and hope from communities organizing mutual aid and providing care for one another. I call upon the power and wisdom of my disabled ancestors such as Carrie Ann Lucas, Stella Young, Ki‘tay Davidson, Laura Hershey, Ing Wong-Ward, and Harriet McBryde Johnson. I think about them often and know their light will show me the way forward.
"For clinicians to take my vent away from me would be an assault on my personhood and lead to my death,” Alice Wong told @aneeman. “I deserve the same treatments as any patient." https://t.co/ThPrVnsNRF
— New York Times Opinion (@nytopinion) March 23, 2020
Online recap: #Coronavirus and the disability community
COVID-19 Reveals A Deadly Failure of Priorities, March 17, 2020, Diane Coleman, Not Dead Yet.
On the Ancestral Plane: Crip Hand Me Downs and the Legacy of Our Movements, March 10, 2019, Stacey Milbern.
Rest in Power: Carrie Ann Lucas, Bill Peace, and Ing Wong-Ward, July 7, 2019, Disability Visibility Project.
Online recap: Beyond inconvenience #PGEshutoff
Resistance and Hope: Stories by Disabled People, October 2018, Disability Visibility Project.
My Medicaid, My Life, May 3, 2017, Alice Wong, The New York Times.
People We Love: Ki’tay Davidson, December 4, 2014, Disability Visibility Project.
CN: death, end of life, healthcare rationing, medical industrial complex, ableism
Honestly difficult for me to keep sharing these threads because this is fucking personal as a vent user.
— Alice Wong (@SFdirewolf) March 18, 2020
What a bullshit way of saying we won't be the ones getting the ventilators.
He should also say they don't know.
And calling them "machines that cause harm" – hmm why do you use them on non-disabled young people then?
You could call a scalpels tools "that cause harm" https://t.co/IuncR8QA4p
— Gabrielle Peters she/her♿️ (@mssinenomine) March 17, 2020
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