*(This piece was originally published as a Healwell blog on August 3, 2023.)
None of us know the names of the Black women with breast cancer who make up the “40% more” deaths than their white counterparts every year. This is partly by design. Their deaths are tragic and preventable, but we don’t know their names because our colonized medical system has given their fate a clean, anonymous name that allows us to keep our distance. That name is "disparity.”
Disparity is death.
In this case, it’s 40% more households with one less member. It’s 40% more kids without moms, 40% more people who lost their partners, 40% more pickle ball foursomes who lost their fourth. 40% more victims of a system that doesn’t want to look at the truth. Disparities are made of people. Lots of them. People who cause them and people who die because of them.
Just as we don’t know these women’s names, we also don’t know the names of the thousands of doctors, nurses, administrators, payers and others who knowingly and unknowingly continue to uphold a failing healthcare system. They don’t stand out. We don’t know them because they look and behave just like we do.
We hide our culpability behind words like “inequity” and “disparity” and “barriers to access.” These words allow us to continue to pretend these deaths, this suffering, are things that happen “out there” in ways that we, as individuals, couldn’t possibly impact in a meaningful way. These words are lies that roll off our tongues daily.
The academic, puffed-up words we use to describe the fundamental harms that are part and parcel of any healthcare encounter by the global majority (by the way, that’s not white, able-bodied people) in America are worse than a band-aid. They’re a blindfold. They are all just a fancy way of saying “Black people, brown people, poor people, disabled people, and LGBTQIA people are suffering and dying when they don’t have to.”
In his groundbreaking docudrama, Exterminate All the Brutes, director and narrator Raoul Peck suggests “It’s not knowledge we lack. What is missing is the courage to understand what we know and to draw conclusions.” And, I would argue, to use those conclusions to take real, transformative, and lasting action to change it.
How can we look at this “system” and conclude that we are doing anything other than witnessing the result of centuries of normalized, and even rewarded,
discrimination and bias? But then, who wants to sit with a conclusion like that? Clearly, not many of us.
And when we look at end of life care, the picture is just as bleak.
Black patients get nonbeneficial care and aggressive care more often than white patients at the end of their lives. Black people diagnosed with terminal cancer are more likely to land in an ICU or to be admitted to the emergency department and Black patients with lung cancer undergo mechanical ventilation at markedly higher rates than their white counterparts. These people’s fates are not the result of genetic differences. They’re the result of inherited bigotry and ignorance.
We look at death rates. We look at the data about the realities of abysmal pain management. We look at patient reports of “rough handling.” We sigh deeply and look away, pretending we have no part in any of this. Here’s the thing. If some part of you believes that some lives are more worth saving than others, this will keep happening.
So, slow down. Greet the part of you that undoubtedly believes in a value hierarchy when it comes to human lives and get to know it. It might be a small part, and you don’t have to tell the world about it, but it’s there.The first step is to stop pretending that you’re “one of the good ones” as you turn back to your Wordle.
It’s more than time to quit pushing our peas around on the plate. We need to talk and think about these devastating realities in a way that leads us to a collective and inspired urgency to address this in real time with real solutions. We don’t have 17 years to allow the “research to practice pipeline” to unfold and, honestly, we’re not even asking the right questions to make our research part of the solution. People are dying today. Right now. And they’re dying for reasons we could understand and change if we were willing.
Our current system is nothing less than an ethical and moral failure.
Thing is, we can start changing it today. Right now. Right inside our little own selves. That’s where these “disparities” are born. Inside you. Inside me. In our long-held, somatically-cataloged behaviors of “othering.” We can wake up this instant and start noticing how we participate in the deaths and in the suffering of the people we say we serve.
You want patient-centered care? Then it’s time to invite some unvarnished, truthful storytelling and to show up to it with some real deep listening. It’s time to make room for soulful questions and for the disquieting truths their answers will reveal. Truths that underlie this disastrous entropy that is manifest in our inability to humanely, kindly, truly care for people.
My white, straight, able-bodied, cis-gendered friends, let’s stop the embarrassing and misplaced fear that immobilizes us and keeps us complicit. When we act, when we resist, when we question… things will change. We’ll all experience some discomfort. If it hurts…. If it’s itchy…. If it makes you squirm, keep going. You’re getting to the good stuff.
Let’s reckon with the harm we’ve caused and are still causing.
And let’s stop it.
Nobody else is going to do this for us.
If you’re ready to do something. Something real, tangible and transformative; join us for Ending Inequities in End of Life Care this October. Get your mind and your heart right on Friday night, October 13th with a 90-minute conversation with our opening presenters, change-leading social work duo Arika Patneaude and Bridget Sumser. Then come back on Saturday for a mind-blowing, heart-expanding day of discussion and exploration with a truth-telling, human-loving line-up of speakers who will share about challenges, successes and plans of action in disability justice, LGBTQIA+ care and experience, how to blow it up from the inside and much more. See you there!