CW: suicide, ableism, racism, death
In this video, we discuss the meaning of the term “ableism”, how it manifests in our society and medical institutions, and what that means for disabled people. Come learn with us!
SOURCES
Definition of Ableism by T.L. Lewis: https://www.talilalewis.com/blog/work…
Study: Physicians’ Perceptions Of People With Disability And Their Health Care: https://pubmed.ncbi.nlm.nih.gov/33523…
FilmDis Study: https://www.filmdis.com/wp-content/up…
Michael Hickson Case: https://www.npr.org/2020/07/31/896882…
Recording/Transcript between Melissa Hickson and doctor: https://www.youtube.com/watch?v=jq-_g…
TRANSCRIPT
Hello and welcome back to the Not Dead Yet vlog! My name is Jules Good, I use they/them pronouns, and I’m the Assistant Director and Policy Analyst at Not Dead Yet. I’m a white person with short brown hair, and today I’m wearing round coral-colored glasses and a black velour shirt. I’m holding my microphone today because my mic stand is somewhere unknowable to me.
Today, we’re talking about ableism. This is a big topic that we won’t tackle all of in one video, but we’re going to start with an overview so that we can dive deeper into topics that hinge on this concept, like euthanasia and crisis standards of care, in future videos. You can think of ableism as a common denominator in many of the issues disabled people face in medical settings– when we understand ableism, we begin to understand the motivation behind everything from triaging during emergencies to assisted suicide policies and more.
So what is ableism? My favorite definition comes from TL Lewis, a Black disabled scholar, author, and activist. TL updates this definition every year to reflect changes in the disability justice movement and the treatment of marginalized peoples. If this definition seems a little long and complicated, don’t worry– we’ll break it down together! Ableism is: “A system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression leads to people and society determining people’s value based on their culture, age, language, appearance, religion, birth or living place, “health/wellness”, and/or their ability to satisfactorily re/produce, “excel” and “behave”. You do not have to be disabled to experience ableism.”
We could make a whole other video on the brilliant nuance of TL’s work here– but for this context, I’ll focus on a few main points. The first thing I want to talk about is the phrase “societally constructed ideas of normalcy.” We all have ideas about what is “normal,” but those ideas are based on our own lived experiences, background, and upbringing. So who gets to decide what is “normal” on a societal scale? That would be the people who have the most social status and power: white, cisgender, straight, nondisabled, wealthy, middle-aged men. We can think about these descriptors as a sort of baseline– or, to use a sports analogy, a football endzone. People who fit all of these characteristics are close to the endzone with minimal barriers in their way. That doesn’t mean nothing in their lives is difficult, but it does mean that their base identities are not the things making their lives harder. As you stray from these characteristics– by being disabled, for example– you are further from the endzone and it is harder to score. As TL points out, eugenics, anti-Blackness and other forms of racism, misogyny, colonialism, imperialism, and capitalism are the societal forces that move people further down the field. And the further you are, the more likely you are to experience ableism– to be treated as if your life has less value, purpose, or inherent worth than people closer to the endzone.
Ableism manifests in our lives in many, many ways, some overt and some more subtle. One way ableism persists in medical settings is through skewed quality of life judgements, which lay the foundation for decisionmaking around withdrawal of life-sustaining treatment, assisted suicide policies, futility judgements, and more.
Quality of life is one of those tricky terms that can have vastly different meanings depending on who is saying it, but we can start with the World Health Organization’s definition. They define it as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.” In other words: how content someone is with their life. Seems unbiased enough on its face, right? But the hazardous term in WHO’s definition is: “in the context of the culture and value systems in which they live.” The context of Western culture, particularly in the United States, is a history and value system full of ableism.
We can turn to a few different places for evidence of this. The first, and perhaps easiest to grasp for the average person, is television; and for superb expertise on that, we can spotlight our friends at FilmDis! FilmDis is a media monitoring organization advocating for authentic representation and inclusion of disabled people in front of and behind the lens, led by Dominick Evans and Ashtyn Law. In their most recent study of disabled representation, they watched 250 different TV shows and collected data on not only the prevalence of disabled representation in the shows, but also on the quality, intersectionality, and authenticity of that representation. Across genres, studios, and production budgets, there is a common thread in bad disability representation: We are portrayed as if our lives and personalities fully revolve around our disabilities… and, that our lives kind of suck. Disabled characters are shown as incapable of doing anything without nondisabled help (CODA), as having a singular dream to be nondisabled (Glee), or as one-dimensional props meant to inspire or motivate nondisabled characters (Breathe). As the FilmDis team puts it in their most recent report: “There are a lot of parts of our day when our disability is not even our focus or highlight. You would not know that from television.”
So how does this translate to the real world? Well, imagine that you are a newly disabled person with no prior lived experience of disability and no familiarity with disability justice. In thinking about what your life will be like with your new disability, the stories you are most likely to have seen are similar to those we’ve just described. This is most likely the case for your doctors, family members, and other caregivers, too. While feeling grief or sadness after a new diagnosis is expected, the hope is that you leave that care setting with at least a little bit of hope that you can live a fulfilling life with your disability– but because disabled people are so often portrayed as living tragedies and pity cases, this is unlikely.
And this is where the concept of “quality of life” and the WHO definition comes back into play. While the WHO says that the individual’s self-assessment is what counts, the reality is that all too often the “quality of life” judgements of others dominate the discussion. When doctors and caregivers are convinced by popular media and societal norms that your life will be difficult and depressing with a disability, they are biased toward thinking your quality of life will automatically be lower than someone without a disability. And there’s research to back this up– a Harvard study surveyed 714 practicing physicians from multiple specialties and locations across the country about their attitudes toward patients with disabilities. More than 80% of physicians surveyed reported that people with “significant” disabilities have “a worse quality of life.”
The effects of this attitude toward disabled patients can be devastating. Care rationing during the ongoing COVID-19 pandemic is a harrowing example. At points in 2020 and 2021 when the patient need for ICU beds and ventilators exceeded the supply at most hospitals, many states employed crisis standards of care. While these standards vary slightly from state to state, the main commonality between these policies is that they prioritize giving treatment to patients who medical professionals feel will respond well to treatment. But in overcrowded emergency rooms with hours-long wait times in understaffed hospitals, that judgment is not always made with care. Around the world, disabled people were denied COVID treatment on the basis of clinical algorithms, which in this case are basic questionnaires that assign point values to people based on how likely they are to benefit from treatment. Certain disabilities impact the score by default, regardless of the condition a person is in when they arrive at the hospital. In addition, disabled people were targeted and pressured into signing Do Not Resuscitate orders (also called DNRs), meaning that they legally consented to not being revived in the event that they stopped breathing or their heart stopped beating. This means that medical professionals identified someone as disabled, decided merely by looking at them that they would not respond well to treatment, and pressured the disabled person into literally signing their life away in a fashion that protects the hospital from liability. This is a very real and ongoing example of biased quality of life judgements endangering disabled lives.
A specific case related to this topic that you may have heard about is the tragic death of Michael Hickson, a 46-year-old Morehouse grad, husband, and father of 5. Michael became quadriplegic in 2015 after a heart attack left him with a brain injury. In 2020, he got COVID and was transferred to a hospital. Michael was a legal ward of a care agency, rather than his family, because of complications in getting him the care he needed after his heart attack. The hospital told Mrs. Hickson that they were going to stop treating Michael and move him into hospice care; the care agency that served as his medical guardian signed off on this decision. A week later, Michael died at the hospital. Perhaps the most troubling evidence from this case comes in the form of a conversation that Mrs. Hickson recorded with one of Michael’s doctors. The full, captioned recording is available on YouTube– we’ll put a link to it in the description for this video. Here’s an excerpt of that conversation:
Doctor: “So, as of right now his quality of life — he doesn’t have much of one.”
Mrs. Hickson: “What do you mean? Because he’s paralyzed with a brain injury, he doesn’t have quality of life?”
Doctor: “Correct”.
To go back to our ableism football field metaphor from earlier in this video, Michael Hickson was pretty far from the endzone as a Black disabled person. We know that Black patients face a multitude of extra problems in hospital settings due to racism– check out our first vlog for a deeper discussion on this. Michael Hickson died prematurely because of biased notions about quality of life for disabled people. Michael Hickson, like so many others, was denied treatment and died because our society devalues the lives of disabled people. Everywhere we look, from hospital rooms to movie screens, disabled people get the message that our lives matter less than those of nondisabled or “healthy” people. We must reject this notion. Disabled lives are beautiful and can be full of as much joy and complexity as nondisabled lives. Let’s work together to build a world where more people know that’s true.
Thanks for watching! To learn more about our work, visit www.notdeadyet.org . Bye!