No One Is Counting

"No One Is Counting"

Ableist Medical Rationing During the Coronavirus Pandemic

Produced by Taylor Cook, Emily Boghossian, & Shirin Barghi

Brooklyn, USA episode 28 - May 9th, 2020






Cynthia McFadden (NBC News): Are there enough ventilators in this country?




Martha MacCallum (Fox News): Are there going to be people in this country who don’t get a ventilator if they need one? 




Devin Scillian (Detroit News Local 4): Who gets life saving equipment and who doesn’t if it comes to that?




Governor Andrew Cuomo (NYS Governor): What am I… What am I going to do with 400 ventilators, when I need 30,000?






[Voiceover] Taylor Cook: The potential shortage of ventilators during the coronavirus pandemic is raising difficult questions about who will be excluded from potentially life saving treatment when there aren’t enough resources to go around. Here in New York, the state hit hardest by the pandemic, disabled people are being left behind in plans for emergency resource allocation


Susan Dooha: The state has in effect said, well we think your death is inevitable and so we’re going to look away, and I very fundamentally disagree.




Susan: I’m Susan Dooha. I’m calling from my living room in Brooklyn which has become my war room for work and for fighting for fair policies for people and care. I'm executive director at the Center for Independence of the Disabled New York, CIDNY. What we do at CIDNY through our work is we help people with disabilities gain skills and knowledge about their civil rights so that they themselves can become advocates. I'm very worried about the state and city's allocation of resources in this pandemic. I see any number of things that are very alarming to me, and that signal discrimination The places where people with disabilities live in congregate settings are not a priority for protective equipment or additional and are drastically understaffed and lack infection control. 




Susan: Everything from nursing facilities to adult homes to group homes, um, to homeless shelters and jails. No one is counting the rate at which people with disabilities in any setting are becoming infected and are dying. If you don't count it, it didn't happen.


Alison Barkoff: My name is Alison Barkoff and I am the director of advocacy at the Center for Public Representation. We do legal and policy advocacy work to make sure that people with disabilities don't face discrimination, whether it's in medical care or being able to work and fully participate in their communities. 


Alison: There were a lot of concerns in New York around disability issues. But the biggest one that bubbled up about the crisis standards of care was a provision in there that allowed for reallocation of ventilators. And we heard extreme concern from people who live in that community, who have very rich and fulfilling lives, but happened to use ventilators in their daily life. And they were thinking, if I get sick, I'm really worried about going to a hospital because someone might take my ventilator away and decide I'm not worthy. 


[Voiceover] Taylor: New York State’s 2015 ventilator allocation guidelines have been interpreted as saying that in the event of a shortage, ventilator users, upon seeking treatment in a hospital, could have their ventilators taken and reallocated. This violent medical ableism isn’t a new feature of the pandemic.




Susan: People with disabilities and people who are Black and Latinx and Asian American have often faced discrimination in the healthcare system. 


Alison: As we started looking at some of the things that concerned people with disabilities, they were many of the same concerns that communities of color had. And a good example is State plans that deprioritize people based on having certain comorbidities. So, you are less likely to be prioritized to get a ventilator if you had diabetes, if you had lung disease, if you had a number of different conditions, which all of those people by definition are people with disabilities. But when you look at historically marginalized communities who have historically had less access to health care, we know that many of these comorbidities are much higher in those communities. There is a long history of discrimination against people with disabilities by the health care system, starting from literally decisions in the Supreme Court, that people with disabilities and particularly intellectual disabilities could be forced to have sterilization and not have children. 


[CLIP]: In the 1927 case, Buck vs. Bell, the court upheld a statute that enabled the state of Virginia to sterilize so-called mental defectives or imbeciles. 


Alison: To more recent cases of discrimination in organ transplants and hospitals having policies that flat out excluded people with certain disabilities 


[CLIP]: There is no law in Georgia that prevents patients with disabilities from being taken off of an organ donor list because of their disability. Only 12 states in the country offer this kind of protection; Georgia would be the 13th.




Susan: Discrimination has included forced sterilization, experimentation. For people with disabilities it can be euthanasia, it can be that the health facilities themselves are not accessible. No one asks you if you may need someone to communicate on your behalf because of your communication related disability. No one asks if you simply need more time to communicate, if you need your service animal with you. No one asks if you have cognitive disability and difficulty understanding things and need them explained in plain language. Or maybe you need materials in alternate formats because you have little vision or you're blind and you need very, very large print or you might need braille. And this is even more of a problem for people who are Black, for people of color who face discrimination that is similar in the health system. There are a lot of forms of discrimination that need to be eradicated.


[Voiceover] Taylor: These examples of medical discrimination reflect the influence of the eugenics movement. Throughout the beginning of the 20th century, the eugenics movement targeted disabled people and other groups considered inferior, undesirable, or dangerous. Medical and diagnostic labels were applied to many marginalized groups and used to justify discrimination. 


Rosemarie Garland Thomson: Eugenics carried out a system of organization, of evaluating human beings based on what we're understood as biological and genetic criteria . A system of differential valuing of human beings. 




Rosemarie: I'm Rosemarie Garland Thomson. I am a professor of English and bioethics at Emory university. I have had the opportunity during my career, really over the last 20 years, to develop, or help develop, the field of critical disability studies.



[PERSON WITH A BRITISH ACCENT SPEAKS OVER INSTRUMENTAL MUSIC] What is the bearing of the laws of heredity upon human affairs? Eugenics provides the answer.


Rosemarie: Medicine offered an enormous vocabulary of diagnostic categories of biological inferiority that the Nazis could use. People with disabilities in the very broadest sense were a very easy target to begin with in the extraordinary medical rationing program that was what we think of now as the Holocaust.




Rosemarie: In the United States, of course, there was a long history of scientific and medical enterprises, which did not use human subjects in a ethical way. Perhaps the most significant of these is the Tuskegee syphilis experiment. 



Frederick Gray (President, Tuskegee Human and Civil Rights Multicultural Center):  The Tuskegee syphilis study was a study financed by the federal government. According to them, it was for the purpose of studying untreated syphilis in the negro male. They selected a group of men, all African Americans, all rural with very little education. They told them that it was a health program. These men, they were never told that they had a deadly disease, they were never told that this really was an experiment, they were never told that they were not in fact being treated. And even when penicillin became available in the 40s, they still didn’t treat them and many of these men died.


Alison: We already started from a framework where people with disabilities have a tense relationship, in many cases, with the health care system. So as we saw COVID really starting to hit the shores of the United States in early March, disability advocates really started ringing the alarm bells. We were watching in Europe as rationing of lifesaving treatment, and particularly ventilators, was occurring in a way that really was antithetical to the civil rights laws that exist in the United States. People being completely discriminated against and deprioritized based on disability, based on age. And we were incredibly concerned that would happen here in the United States. States started thinking about emergency planning and how decisions would be made if care had to be rationed. Some states had already created policies, and when disability advocates started looking at those policies, we found really incredible ableist and really facially discriminatory pieces in there. 


Susan: Rationing guidelines exist in 25 States in the nation. 

Alison: The types of things that we saw across the country were things like what we would call categorical exclusion. So saying you absolutely cannot even be in the line at all if you have certain disabilities. 


Susan: And there are some particularly horrendous examples in Alabama, in Tennessee, in Washington state. 


Rosemarie: Alabama for example, had an old state guideline that named categories of people that would be prevented from getting scarce medical resources such as ventilators.


Alison: in Alabama, for example, if you had a significant intellectual disability, although that's not the word that you used or if you had significant dementia, you are not even eligible.


Susan: There are policies that say that people with severe mental retardation, first of all, the concept itself is wrong, may be poor candidates for ventilators if they become very, very seriously ill.


Alison: In states like Tennessee and Kansas, 


Susan: In Kansas and Tennessee, 


Alison: We saw that if you had certain neuromuscular disabilities


Susan: People with advanced neuromuscular disease


Alison: You were completely excluded


Susan: Excluded from receiving critical care, maybe never even get to the ICU.




Rosemarie: What's different about this pandemic is that the fullness of the disability rights movement and what it has brought in terms of changes to, not just how we understand ourselves, but the world that we live in and the way it's built has changed tremendously in the last 30 years since the Americans with Disabilities Act and other acts around the whole world have come into play.






Jeff Moyer:

Keep your eye on the prize, hold on

For Civil Rights, we’re standing knocking at our door,

and Reagan, you know he won’t stand for 504.

We gotta keep our eye on that prize, alright this is the last time,

Hold on




Kitty Cone: Over 150 people with disabilities and our supporters, marched out of this building after occupying it for 26 days, and celebrated our victory in forcing the government to finally issue strong regulations to implement Section 504 of the Rehabilitation Act of 1973.


Corbett O’Toole: I mean, a bunch of cripples took over a federal government building.


Demonstrator: We did it! We did it by ourselves. We did it with love. We will continue to fight for the implementation. We will not stop.


Alison: There are several disability rights laws that prohibit discrimination. The Americans with Disabilities Act, Section 504 of the Rehabilitation Act, Section 1557 of the Affordable Care Act. These are all federal civil rights laws that prohibit discrimination based on disability. 




Alison: And that includes making decisions that are based on stereotypes about people with disabilities and their worth or quality of life judgments These are all federal civil rights laws that prohibit discrimination based on disability. And that includes making decisions that are based on stereotypes about people with disabilities and their worth or quality of life judgments. And many of these policies are really rooted in that.


[Voiceover] Taylor: Disabled activists across the country, along with groups like CIDNY and the Center for Public Representation, have been forming coalitions, organizing campaigns, and taking legal action to protect their civil rights. As a result of these organizing efforts, Alabama withdrew its guidelines excluding certain d  isabled people from accessing ventilators and Pennsylvania issued updated healthcare triage guidleines prohibiting discrimination on the basis of disability. 


Alison: Literally our lives are on the line right now and we don't have the luxury of just sitting back, so the activism in the disability community has been incredible.


Susan: It is important for everyone to care. It is important that civil rights laws be enforced for all of us. I think we can all agree that we are all in danger when people's civil rights begin to slip away.


Rosemarie: Disability is a way of being in the world, and it's a category of being that all of us will enter into if we live long enough. This pandemic is an opportunity to practice world building that is inclusive and humane. It's an opportunity for us to think through, really clearly, what equality might mean, what justice might mean.


Susan: So what would health equity look like? Health equity would include asking people about the reasonable accommodations they need because of their disabilities. In order to have equal access to healthcare. We need a bias-free health care zone where health practitioners are taught to explore and expose their own biases and are taught to treat people with disabilities, people who are Black, people of color as individuals and that our lives are not less valuable.




Susan: I cannot begin to tell you how many people with no disability. Imagine that those of us who have disabilities have a terrible quality of life, that our lives are not worth living. We'd rather not have them. And they don't know how much fun we're having.