I have nightmares, whether I’m asleep or awake, as do many of us as we endure the trials of the Covid-19 pandemic. Will it strike us, our families, our friends? Social isolation weighs on us, but not as much as the fear of being isolated from those we love in illness and in death.
Mothers like me of children with significant mental or cognitive disabilities have yet another fear: If my child gets ill and needs hospitalization, especially when resources are scarce, the outcome is almost certain to be tragic, and I won’t be able to be there.
Although discrimination against people with disabilities violates the Americans with Disabilities Act (ADA) of 1990, some state triage protocols explicitly deny treatment to people like my daughter, Sesha, although the Trump administration has appropriately declared that no one should be denied treatment because of a disability.
Sesha is cognitively disabled, so much so that her physicians said she has “no measurable IQ.” Yet she lights up my life and the lives of those who get to know her. She loves her life, which is filled with music and joy. Her calm, steady loveliness makes the world a more beautiful place.
The fact that she cannot speak, cannot walk without help, cannot dress or feed or toilet herself, does not give her any less of a right to be in this world, accorded dignity and given the same level of care as anyone else, even in this terrible pandemic.
Despite the ADA and the Trump administration’s declarations, I fear triage. In fact, I fear hospitalization even without triage protocols.
Most doctors and nurses know little about the complexities of treating people with intellectual disabilities, many of whom also have complicated medical frailties. Overwhelmed, overworked, and exhausted medical providers may not be able to take the time to learn how to care for patients such as my daughter, with her seizures, her multiple medications, and her inability to follow even simple instructions so common to hospitalization, such as “Turn over” or “Take a deep breath.”
What if she goes into respiratory distress and needs a ventilator? Will she be given that lifesaving therapy, or will it be deployed for some other patient?
Equally terrifying, will isolation protocols dictate that I cannot be there as her advocate, translator, and support? If so, it is doubtful that she would come out alive. The need for an advocate is essential, and equally urgent for many nonstandard patients.
Rationing and triage and isolation protocols aggravate my already stomach-churning fear. Even in the absence of overt discrimination, I and others like me must be concerned about the many ways discrimination is baked into standard practices and protocols. There are poison pills in seeming rational recommendations.
One standard recommendation is that people with “co-existing health conditions” should have a low priority or should not be treated at all. The ADA would not permit disability, as such, to be considered a “co-existing health condition.” That would be discrimination against people with disabilities. But some disabilities do involve health issues that could be considered as co-existing health conditions on par with heart disease, lung disease, and diabetes. For example, intellectual disabilities, especially those caused by genetic disorders, include complications that might be thought to hinder treatment and so result in a poor prognosis, even though they are not among frequently cited co-existing health conditions.
Scoliosis, also known as curvature of the spine, if sufficiently pronounced can affect the function of internal organs, especially the lungs, making people with it more prone to pneumonia. Epilepsy can accompany mental disabilities. Seizures, which are often triggered by fever, can be counted as a co-existing condition, making treatment more challenging. If a patient cannot understand a clinician’s request to “take a deep breath,” will that be considered an obstacle to a good prognosis?
Triage protocols are enacted to maximize benefits. The benefit here is presumably to save as many people as possible. Yet benefits are not free-floating goods to be readily counted. Benefits attach to people. So, who is benefited, and who decides what a benefit is or when it is maximized?
The benefits are unlikely to benefit disabled people, and surely not people with intellectual disabilities.
If disabled people and advocates for those who cannot speak for themselves do not participate in policy making, the poison pills will go unnoticed or unremarked upon. Yet the disabled rarely are “in the room” where policy is made. They don’t help determine whose benefits are served, what the benefits are, and how they are counted.
The benefits that should accrue to disabled people should be counted equally.
The most indecent of societies, Nazi Germany, began its attempt to “purify the race” by killing off mentally disabled people, and then went on to eliminate other lives it decided were unworthy. The Nazis deemed it to be a benefit to rid the world of people they believed were “life unworthy of life.”
But no decent society should make such judgments. That we maintain the decency of our society should be a benefit in any calculus for maximizing benefits.
When asking who determines what counts as a benefit, it isn’t uncommon to encounter arrogance on the part of those who judge the value of disabled lives. Most able people — and it is they who generally determine what a benefit looks like — view disabled lives as sad, even tragic, and with that view are likely to discount the benefits that their lives produce.
Yet studies have consistently shown that from the disabled person’s perspective, even those with significant physical or intellectual disabilities, they can and do live lives of fulfillment, love, and meaning. How good that life is depends on many factors, not least of which is the public perception of the value of that life.
The thought that a skewed public perception can make its way into protocols of how medical care is rationed is, for disabled people and those care about them, the stuff of nightmares.
Eva Feder Kittay is professor emerita of philosophy at Stony Brook University/SUNY. Her latest book, “Learning from My Daughter: The Value and Care of Disabled Minds” (Oxford University Press, 2019) was award the PROSE prize for the best book in philosophy in 2020.
Wow, that is beautifully put and everything else that could be said for it, but here’s wishing that you wouldn’t worry so much about things like that ventilator issue, from what’s being said, people should anytime now be getting all finicky about what kind of ventilator they’ll want.
But generally though, hang in there. People need those by whom they need to be taught standing strong!
A poignant, powerful plea of support for those whose voices are muted and an insightful expression from personal experience to alert those who forget that the humane makes us human.