The Incapacity Neighborhood Fights Lethal Discrimination Amid The COVID-19 Pandemic

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The COVID-19 pandemic has revealed much that is usually hidden. For people with disabilities, the most revealing and terrifying aspect of the crisis is the sharper, more critical view we are getting of long-standing strains of ableism in health care policy and medical ethics.

A progression of worries.

As the COVID-19 pandemic unfolded, so did multiple layers of danger specifically for people with disabilities and chronic illnesses:

First we learned that certain disabilities and chronic illnesses put us at higher risk of severe illness and death from the COVID-19 coronavirus.

Next, as social distancing became the one preventative tool seemingly available to everyone, we realized that for some people with disabilities it is inherently harder or impossible to completely self-isolate.

Then as the pandemic hit closer to home here in the United States and we heard more details from other countries, it became painfully obvious that for people with disabilities in institutional care … in nursing homes, group homes, and other congregate facilities … simply being in those densely-packed environments put them at much higher risk.

Finally, as infection rates and serious illness skyrocketed, states began to reveal emergency procedures for ventilator shortages that would implicitly and explicitly disadvantage or rule out people with certain disabilities. Some sought to bar people with certain conditions outright, like intellectual disabilities and traumatic brain injuries. Others assembled lists of both medical conditions and everyday functional impairments that would clearly screen out disabled people.

Disabled people appear to be surrounded on all sides by danger from this pandemic, with one after another escape route blocked.

The dilemma …

Why did this happen? What is behind this rolling series of interlocking threats to disabled people’s lives? While COVID-19 itself is primarily responsible, and to some extent an unavoidable, impersonal threat, human ethics, policies, and biases play decisive and destructive roles.

Ableism is always present in modern culture, but it is rarely this deadly unless pressed into concrete action by outside forces. In this case, the triggers were the COVID-19 global pandemic, the lack of logistical readiness, and the slow, halting response. Among other effects, this created a very specific material dilemma. When the number of people needing ventilators to treat COVID-19 is greater than the number of ventilators available, how do doctors and hospitals decide who gets a ventilator and who doesn’t?

States and individual hospitals started to draft or reveal previously developed scarcity policies that either explicitly or implicitly excluded people with disabilities … not just on an individual basis, and not only as a secondary, knock-on effect … but in some cases categorically, by diagnosis and certain arbitrary measurements that have little to do with COVID-19 survivability.

According to the Center for Public Integrity, which researched and reported on this problem:

“These policies take into account — in ways that disability advocates say are inappropriate — patients’ expected lifespan; need for resources, such as home oxygen; or specific diagnoses, such as dementia. Some even permit hospitals to take ventilators away from patients who use them as breathing aids in everyday life and give them to other patients.”

Specific criteria that could be used to deny care or place patients at a lower priority for scarce resources like ventilators include:

• “Severe” intellectual disabilities.
• Dementia.
• Measures of “baseline functional status” (meaning how capable you were before getting sick) such as “loss of reserves in energy, physical ability, cognition and general health.”
• Cystic fibrosis and other chronic lung conditions.
• Need for assistance with ADLs, (Activities of Daily Living), such as bathing, dressing, toileting, and meal preparation.
• Regular, everyday need for oxygen or dialysis.
• How many more years a patient is deemed likely to live, without considering COVID-19.

This approach is obviously frightening for people with these and similar conditions. It also clearly collides with disability rights laws like Section 504 of the Rehabilitation Act and the Americans with Disabilities Act.

But if doctors aren’t allowed to make hard decisions partly based on some disabilities and chronic illnesses, what criteria can they use, other than ‘first come, first served?”

This apparent moral and practical dilemma is reminiscent of the “ticking time bomb” argument in favor of allowing torturing terrorism suspects. If you accept all of the stated premises setting up the dilemma, it’s possible to justify the morally upsetting decision. But the premises usually aren’t as ironclad as they are presented. The assumed choice between random, senseless death and disability discrimination is a false choice. Maybe we can treat people fairly, save lives, and not discriminate against disabled people, even in a crisis. But first we have to understand the mechanics of disability discrimination as it specifically plays out in health care emergencies.

How COVID-19 medical discrimination works

Disability scholar and activist Ari Ne’eman, writing for The Hastings Center, a bioethics organization, outlines the way disability prejudice, or ableism, threatens the rights and lives of disabled people when consciously and unconsciously incorporated into medical policies and contingency plans. He cites three main ways that ostensibly impartial medical judgment can put disabled people at a categorical disadvantage.

1. Resource intensity — how much time, effort, and resources a person will require to have a chance of surviving COVID-19. As already noted, certain pre-existing conditions tend to make the illness more potent and deadly, suggesting that more effort will be needed to save them than others might need.
2. Long-term survival — how long the patient is likely to live if they do survive COVID-19. Ageism obviously plays a role here, but so do certain disabling conditions that are progressive and suggest a shorter than usual lifespan. The temptation is to reserve scarce resources, like ventilators, for someone more likely to live a “full life” after surviving COVID-19, and not go all out to treat someone who isn’t expected to live that long anyway.3
3. Short-term survival and reasonable modifications — whether permanent, pre-existing conditions like spinal cord injury or impaired speech have anything to do with short-term prospects of COVID-19 recovery … also, whether the patient would need disability accommodations during treatment, like Sign Language Interpreters or additional personal care.

Alison Barkoff, Director of Advocacy at the Center for Public Representation, (CPR), also points out that medical ableism isn’t new, saying:

“There is a long history of discrimination and bias against people with disabilities in accessing healthcare, often based on stereotypes and perceptions about the value and quality of lives of people with disabilities.”

As evidence, Barkoff cites documented discrimination against people wtih intellectual disabilities in organ transplants, and the use of Quality Adjusted Life Years (QALYs) to prioritize other forms of care for people with signficant disabilities.

This current equipment crunch is not just a regrettable situation that happens to disproportionately harm disabled people. It is more than a difference of abstract philosophical opinion. It is blatant disability discrimination and it is illegal. And contrary to the view of some medical planners and ethicists, it doesn’t even make sense.

Objectivity vs. subjectivity

Defenders of policies like these tend to say they are “misunderstood,” and go on to explain the concept of scarcity and the difficult nature of the decisions that have to be made. But disability advocates know what scarcity means, and they understand about tough decisions. They just think decisions shouldn’t be made on the basis of stereotypes and non-medical judgments.

A more substantial defense is that these policies are trying to maximize the number of lives saved and number of years to live. They claim that it is an objective approach and therefore fairer than the alternatives, either an unregulated scramble for resources, or a competition of individual emotional pleading. But are these criteria really so objective, if they are based on warped perceptions of disability and the value of disabled lives, rather than strictly medical facts?

In an April 3 Atlantic article, disabled attorney Daniel Florino says:

“People overwhelmingly believe that being disabled implies a worse quality of life than it does … what that means in practical terms is that people like us will die.”

And in an April 4 Vox.com article, San Francisco disability activist and regular ventilator user Alice Wong argues:

“Even the notion of ‘quality of life’ as a measurable standard is based on assumptions that a ‘good’ healthy life is one without disability, pain, and suffering. I live with all three intimately and I feel more vital than ever at this point in time, because of my experiences and relationships.”

These supposedly neutral, data-driven measurements meant to produce objective, unbiased medical decisions are actually shot through with subjectivity … with all the biases anyone can have about what being disabled is actually like.

To be sure, there are intense emotions coming from disabled people too, which may lead people to conclude that it’s the medical community that best represents objectivity, while disabled people are, understandably perhaps, too subjective to make these tough calls. This sets the issue up as a fight between objectivity and subjectivity themselves.

But neither side is entirely objective or subjective. If anything, the medical community’s reliance on subjective evaluations of life potential and value, and disabled peoples’ insistence on sticking to strictly medical determinations, suggest that the disability side has the better claim to being rational and truly impartial … whether or not that even matters. Because in the end, this is a fight for survival and personal agency, not a cocktail party debate.

The disability community Is responding.

As the Center for Public Integrity reports:

“Disability advocates have already filed formal complaints with the federal government about the rationing policies — sometimes called “crisis standards of care” — in Alabama, Kansas, Tennessee and Washington.”

These complaints were filed and are being pursued by a coalition of disability organizations, including the Center for Public Representation, The Arc, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law, disability rights attorney Sam Bagenstos, and the Disability Rights Education and Defense Fund, with endorsements and help from scores of other disability organizations, including the National Council on Independent Living, the American Association of People with Disabilities, and state Protection and Advocacy agencies.

In an initial response, the U.S. Department of Health and Human Services Office of Civil Rights on March 28 issued a bulletin warning states and health care providers that it is discriminatory and illegal to deny any COVID-19 care:

“… on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

As Alison Barkoff of the CPR notes:

“The guidance specifically said that civil rights law remain in place during the emergency and that it is illegal to put people with disabilities at the end of the line for care during a crisis.”

The CPR has since produced a series of policy making guides that offer practical alternatives to discriminatory allocation standards, especially for states and hospitals. Its April 8 policy guidance centers on a series of self-evaluation questions designed to identify “categorical exclusions,” biased assessments of disabled people’s quality of life, and criteria that have more to do with disabled people’s everyday functioning and social roles than with true medical evidence.

Two states so far, Alabama and Louisiana, have amended their standards to settle cases with the HHS Office of Civil Rights and disability groups. Colorado and Illinois are also both working with advocates to revise policies to avoid disability discrimination.

This is only a start. Several specific policies are still on the books or otherwise active in many states, including some that are even more provocative. For example, New York’s ventilator allocation plans suggest that it can take ventilators away from people who already use them in their everyday lives. A March 26 letter from New York’s Protection and Advocacy agency, Disability Rights New York, (DRNY), to Governor Andrew Cuomo calls on New York State to:

“ … address the potential chilling impact that ventilator rationing will have on individuals with disabilities who utilize ventilators on a daily basis. “

The letter profiles four current ventilator users in New York and their specific fear of their ventilators being taken away if they seek hospital care, and given to others with COVID-19  who might be “deemed a higher priority.“ With no changes or clarifications made, on April 7 DRNY filed a complaint against the State of New York with the U.S. Department of Health and Human Services.

Other grassroots efforts, like #NoBodyIsDisposable, a collaboration of disability and weight discrimination activists based in Oakland, California are producing tips and guidelines to help disabled people prepare for possible hospitalizations and the need to fight for their care.

If ventilator scarcity turns out to be less critical than predicted, it will be good news all around. But it won’t leave these issues unresolved now that they have been so glaringly highlighted. Barkoff sees some encouraging signs of progress:

“In some states, the people developing these policies are seeking input from stakeholders, including the disability community … Hopefully as a result of the advocacy of the disability community and HHS’ OCR, more states and hospitals will have non-discriminatory policies around accessing medical treatment in place by the end of this pandemic.”

For disabled people, all of this is shocking, but not surprising.

Some disabled people’s experiences lead them to believe that we are mostly cherished and protected in society, even in some ways privileged. There are after all some rich and socially dominant disabled people, and disabled life is not always unrelieved hardship, poverty, and exclusion.

But most disabled people are at least somewhat and at some times aware that our existence is merely tolerated. We have all been reminded, often when we least expect, that our place in society is conditional. The sordid history of eugenics, and more contemporary “assisted suicide” and “right to die” movements add to this sense of being devalued, of a weird societal attraction to death and erasure of disabled people.

Even the popularity of physical fitness and good nutrition, in connection with what can rightly be described as “fatphobia,” underscores how people with less than optimal health or “normal” bodies are devalued and blamed for their own problems and discrimination.

That is why the COVID-19 pandemic is uniquely frightening for disabled people, but also why that terror isn’t entirely a surprise.

What you can do …

Visit the #NobodyIsDisposable website for practical steps you can take to protect your rights should you get sick and need to go to the hospital.

Connect with national and local disability rights organizations, like the ones already mentioned and linked, and the Centers for Independent Living, which are information, counseling, and advocacy nonprofits in every state run by and for people with disabilities.

If you personally experience disability discrimination connected to the COVID-19 pandemic, tell your story to the Center for Public Integrity.