Like millions of people around the world right now, I am extremely concerned about COVID-19 — the new-to-humans viral strain in the coronavirus family that affects the lungs and respiratory system. As someone at high risk due to my physical disability, cerebral palsy, I am afraid of being infected, and I worry about my parents and other older relatives too. But there is something I fear more. I am terrified of dying from COVID-19 not because my death is inevitable, but because my life may not be viewed as worth saving.
“That would never happen,” you might think. Surely people with disabilities have some kind of protection under the law against being denied life-saving treatment? Unfortunately, at this very moment, states are putting triage policies in place in case there is a shortage of ventilators and other equipment that would allow doctors to ration and deny care based factors including the patient’s age and medical history.
Our country is at risk of mirroring Italy, where such decisions are already being made and people with disabilities and elders dying when they might have lived if they had access to a ventilator. On March 24, New York Governor Andrew Cuomo said in a news conference that his state has 7,000 ventilators but needs 30,000 more. “You pick the 26,000 people who are going to die because you only sent 400 ventilators,” he told the Federal Emergency Management Agency.
States already have pandemic resource allocation policies in place that deprioritize disabled lives. In Washington state, rationing guidance distributed by the Department of Health includes a provision that triage teams can transfer COVID-19 hospital patients with “loss of reserves in energy, physical ability, cognition and general health” to outpatient or palliative care. This describes the majority of people with physical and/or intellectual disabilities, or could be interpreted as applying to us. In Alabama’s policy from 2010, people with severe or profound intellectual disabilities are listed as “unlikely candidates for ventilator support.” Tennessee’s 2016 protocol called for people with “advanced untreatable neuromuscular disease” such as multiple sclerosis and spinal muscular atrophy to be excluded from critical care. And in a particularly disturbing set of guidelines from 2015, the New York State Department of Health said hospitals could take away ventilators owned by people who require them to live if they check into the hospital during a scarce resource situation.
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Would you go to the hospital if you knew they could steal the ventilator you use to breathe every day, effectively murdering you? How would you feel knowing your son with an intellectual disability is an “unlikely candidate” for a ventilator if he gets sick? How would you feel knowing that if your relatives who spent spring break on the beach brought the disease back to your small town, you might be denied life-saving treatment because you have a neurological condition and use a wheelchair? These are the reasons people like me aren’t sleeping at night. (Really. It’s almost 5 a.m. as I write this.)
As a person with cerebral palsy, I fear I will be judged based on my use of a wheelchair and limited mobility in my arms and legs. While I do not believe a person’s value depends on how much they contribute to society economically, far too many others do, including some doctors. I fear a doctor may view me as “useless,” without knowing about my job or travel blogging or advocacy. And I’m even more afraid for other people with disabilities — those who use ventilators or BiPAP daily, who can’t work at all because of their health, who are isolated in nursing homes, who live in extreme poverty, who are people of color or otherwise marginalized in multiple ways. They matter too. We all deserve equal access to care, regardless of our disabilities.
These rationing policies are a symptom of the deep ableism ingrained in the medical profession. People with disabilities are often seen as less worthy of care, less valuable as human beings. Of course, many individual doctors and nurses on the front lines of this pandemic are heroes, working for days at a time without proper protective equipment to save the lives of all their patients, regardless of disability, chronic illness or age. But if the system itself does not protect people with disabilities and chronic illnesses, some of us will pay the ultimate price at the hands of those who do not see our value.
I know tens of thousands of other people with disabilities and chronic illnesses are having the same fears right now. What can we do? The situation feels almost hopeless, but it’s not. First, there is some good news — disability rights organizations are mounting legal challenges against these rationing policies, arguing that they violate the Americans With Disabilities Act and other federal laws. Disability Rights Washington, The Arc of the United States, and Self Advocates in Leadership have filed a complaint with the U.S. Department of Health and Human Services Office for Civil Rights about Washington’s discriminatory ventilator allocation policies. Hopefully, action will be taken before lives are needlessly lost.
If you or someone you care about is at risk of death due to discriminatory rationing policies, the Disability Demands website makes it easy to tweet about this issue and others affecting people with disabilities during the pandemic. You can also contact elected officials in your state about your concerns. Ask them to issue guidance prohibiting discrimination based on disability when allocating treatment resources for the coronavirus. Research the triage guidelines for your state so you can point out specific problems and also be prepared to advocate in case you or a loved one becomes ill.
Take the time right now to write down the types of care you would or would not want to receive if you must be hospitalized due to COVID-19. Write something that is clear and factual, but that also humanizes you, so it will be harder for doctors to deny the care you need. If we make it clear, in writing, that we want to live, but they allow us to die when we could’ve been saved, in the long run, society can be held responsible for this preventable tragedy. I feel so strongly about this, I have decided to share what I want doctors to know about me. If I end up in the hospital and unable to speak for myself, please make sure they read it. And please write your own, and share it below if you wish.
My name is Karin Willison. I have cerebral palsy and use a power wheelchair, but I am otherwise fairly healthy. If I must be hospitalized due to COVID-19, I want all necessary measures to be taken to save me, including non-invasive ventilation or ventilation with intubation.
I am a graduate of Stanford University and also have a master’s degree. I live in my own home and I work as an editor and writer at The Mighty, a site for people with health conditions to share our experiences. I love being part of this community and advocating for others. In my spare time, I road trip around the country and blog about traveling with a disability. I have a loving father and stepmother, many loyal friends and four beautiful dogs.
I am a human being. I have value. I am not expendable, and I will fight with everything I have to survive the coronavirus and any other health challenge that may be thrown my way. Do NOT judge me as less worthy of a ventilator or other treatment because I use a wheelchair. I will not sign a DNR, because I want to live. I have a fulfilling life and I’ve got lots more living to do. So please advocate for me, give me the care I need, and I will do whatever it takes to win the battle for my life.
I refuse to be silent when the lives of so many people in my community are at risk. Please join me in speaking out against discriminatory rationing so we can stop these policies before lives are lost.
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