On the 21st day of total quarantine, my husband, David, and I were curled up in bed, sleepily discussing how our toddler was coping with having only us as playmates. (He had a few new fears, but was mostly OK: certain pillows, falling vases, our sleepy old dog’s “sharp claws.”) Midway through our conversation, I made the rash decision to check the news on my phone. Within seconds, we were both wide awake, up and pulling out our computers, plotting ways to make myself look as unimpaired as possible.
I have dysautonomia and hypermobility Ehlers-Danlos syndrome (hEDS), which affects multiple systems, including dysregulated heart rate and blood pressure, partial gastrointestinal paralysis, and relentless chronic pain. When I’m not in a wheelchair, no one would know I’m disabled, because most of my symptoms are invisible. Also, if I were to get COVID-19 and have to be hospitalized, I would want to remain that way for as long as possible. My disability won’t shorten my lifespan naturally, but I worry that rationing of medical care will.
We decided that I would never take my large power wheelchair to hospitals. Instead, I would rely on the manual option the hospital offered. That way, any mobility issues would be attributed to the virus, not my disability. We would definitely exaggerate how many daily tasks I could accomplish on my own. (I couldn’t grocery shop, cook, or clean, and even going to the bathroom was sometimes too much for me, but I would never talk about it.) David and I thought about my various identities as a writer, a mother, and a social worker, and decided that the last profession was the one society valued the most. I put that profession first.
The catalyst for our emergency family planning meeting was our reading about the NICE Clinical Frailty Score, used by the UK’s National Health Service (NHS). During the COVID-19 pandemic, doctor shortages may mean triaging patients, and the score (on a scale of 1 to 9, with 9 being the most frail, or “terminally ill”) will help determine who should receive intensive care first, or at all. I scored between 5 and 6, and the document said that health care providers should deprioritize patients with a score of 5 or above.
Though we live on opposite sides of the Atlantic, and British health authorities eventually revised these guidelines, their existence alone sent us into a state of panic. I’m not proud of the fact that I lied or abused the privilege of passing as able-bodied, but I feared that if I faced this potentially life-threatening discrimination and sought treatment in hospital, I might not be able to see my young child grow up.
My husband and I scoured the internet for clues as to what criteria our local hospitals were using. What we found made us uneasy. In the United States, the most widely accepted form of triage, often called the “utilitarian” approach, takes into account the patient’s condition at the time of admission and pre-existing medical conditions, aiming to save as many people as possible for as long as possible. For example, one triage document in Alabama states that in cases of “severe intellectual disability,” doctors should carefully consider whether intensive care would benefit the patient. Meanwhile, Washington state’s exclusion criteria instruct doctors to consider a patient’s “baseline functional status” based on reduced energy or dependency on assistance when allocating resources. And Pennsylvania instructs doctors to consider excluding patients with cancer who have less than 10 years to live.
Her daughter’s worst medical nightmare was over. The world’s nightmare had only just begun.
However, mortality predictions, even when made in the best of times, may not be accurate. In fact, the Sequential Organ Failure Assessment (SOFA), used in some states to rank patients’ chances of survival and prioritization for treatment, was not developed as a rationing tool or survival predictor, but as a way to determine appropriate treatment for septic patients. In fact, the National Academy of Medicine specifically warns against using SOFA to predict mortality in medical rationing and triage. Even if mortality could be perfectly predicted, this would be far from a neutral principle. Due to social health care disparities by race and class, prioritizing patients with the highest chance of survival would likely have discriminatory effects.
State assessment criteria often take into account age, quality of life, functional status, and social utility in addition to mortality, but this is not very reassuring. Quality of life assessments are particularly dangerous for people with disabilities because they are not the agents of their own lives and because patient and physician perceptions often differ. Relying on health care providers to value our lives with biases that we do not acknowledge is frightening at best.
Publications like The New York Times, Vox, and The Wall Street Journal have reported on the ethical dilemmas doctors may face when faced with a shortage of beds and equipment. These scenarios are rapidly becoming less theoretical. At Columbia University Hospital, for example, doctors are already making do with ventilators, using just one for every two patients. Experts predict ventilator shortages in New York and New Orleans this week. Healthcare workers are already working in dire conditions, and we have yet to see the worst. I respect their service and do not envy the burden they are carrying.
But these stories largely overlook the perspective of those who die because of these decisions. In response, disability activists have spoken out, declaring, as they have done so many times before, that “it can’t be about us without us.” And those of us who are losing in ethical dilemmas have something to say to the putative winners. This kind of illness may be the first time you truly exist in your body and feel that existence like torture. At some point, you may be convinced that it’s not something you can bear. There may be moments when the whole world becomes like a little hole and you feel nothing but pain. Then you find yourself craving food. Or wanting to watch TV. What felt impossible becomes bearable and then fades into the background. Believe it or not, you will adapt. That adaptation is to survive. If your functional status changes long-term after you encounter covid-19 or another illness, your disabled brothers and sisters will be here to welcome you. You, like me, will find a community that is resilient, inclusive, thoughtful, and powerful. Many of us have already ended up where you are headed. If you let us die, who will show you the way?
I’m not trying to tug at your heartstrings to make you reject logical health care rationing. I’m trying to move you to your bones. What I’m trying to say is that we are all valuable, no matter how much care we need or what devices we need to prolong our lives. And inequality hurts us all. When we reduce each other to our social utility, our life expectancy, our daily functioning, our time spent in intensive care — when we feed those factors into some algorithm to determine who deserves care — we all become less human, we lose our humanity.
During this pandemic, disabled people like me are glued to our screens, worrying about the decisions others will make for us if we get sick. We are listening when you speak about us, and we hope you will listen too.
Raising a child with a disability makes you feel like a fraud
Her daughter’s worst medical nightmare was over. The world’s nightmare had only just begun.
My hospital used to have all kinds of ICUs, now we only have one dedicated to COVID-19.