How Triaging Medical Scarcity Disadvantages Disabled People

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By Eva Feder Kittay

I have nightmares, whether asleep or awake — as do we all as we endure the trials of the pandemic. Will it strike us, our families or friends? Social isolation weighs on us less than the fear of being isolated from those we love in illness and in death.

Mothers of children with significant mental or cognitive disability add to these fears still another. If their child gets ill and needs hospitalization, especially under triage, the outcome is almost certain to be tragic. I am such a mother.

Although discrimination against people with disabilities violates the Americans with Disability Act (ADA) of 1990, some state triage protocols explicitly deny treatment to people such as my daughter. Appropriately, the Trump administration declared that no one should be denied treatment because of a disability.

My daughter is cognitively disabled, so much so that her physicians said she has “no measurable IQ.” Yet she lights up my life and those who get to know her. She loves her life, which is filled with music, love and joy. Her calm steady loveliness makes the world itself a more beautiful place.

The fact that she cannot speak, cannot walk unassisted, 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 another, even in this pandemic.

Despite the ADA and the Trump administration’s declaration, 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, who can also have complicated medical frailties. Will they receive treatment at all?

Overwhelmed, understaffed and exhausted medical providers may not be able to take the time to learn how to care for people such as my daughter, with her seizures, her multiple medications, and her inability to execute even simple instructions.

What if she has a tracheotomy and uses a ventilator, will a hospital deploy it for another patient?

Worst of all, 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 equally urgent for many nonstandard patients.

Rationing and triage protocols aggravate an already stomach-churning fear. For even

in the absence of overt discrimination, we have to be concerned about the many ways discrimination is baked into standard practices and protocols. There are poison pills in seeming rational recommendations.

One such standard recommendation is that people with “co-existing health conditions” should have a lower priority or should not be treated at all. Disability itself cannot be a co-existing condition, such as lung or heart disease. But intellectual disabilities that stem from genetic disorder include other complications.

Scoliosis (that is, curvature of the spine) for example, if sufficiently pronounced, can affect the function of internal organs, especially the lungs, making these individuals more prone to pneumonia. Epilepsy also can accompany mental disabilities. Seizures, which are often triggered by fever might be counted as a co-existing condition making treatment more challenging. If a patient cannot take the direction, “take a deep breath,” will that be considered an obstacle to a good prognosis?

Fundamentally, triage protocols are enacted to “maximize benefits.” The benefit presumably is to save as many people as possible. Yet benefits are not free-floating goods to be readily counted. Benefits attach to someone. 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, as well as 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 it happens.” They neither determine whose benefits are served, what the benefits are, and how they are counted.

Why do benefits of disabled people not count equally? That we are not ridding the world of disabled people, including those with mental disabilities, should itself be a benefit to be counted.

The most indecent of societies, Nazi Germany, began its attempt to “purify the race” by killing off mentally disabled people — they then went on to eliminate those lives that they decided were unworthy of life.

The decency of our society should be a benefit added into the calculus.

When we ask who determines what counts as a benefit, we encounter arrogance on the part of those who judge the value of disabled lives. Most able people, and it is they who determine what a benefit looks like, will view a disabled life as a sad, even tragic fate, and with that view, are likely to discount the benefit that life produces.

Yet, studies have consistently shown that from the disabled person’s perspective, even those with very significant, even intellectual, disabilities, 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 makes its way into protocols of how medical care is rationed is, for disabled people and those care about them, the stuff of nightmares.

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Previously published on permission.

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