Part 130: Disability Corner: Medical AbleismDisability Corner: Medical Ableism
This is a dark one. If you have issues with medical trauma, you may want to skip to the next post.
While reading the news one day, because I need to keep my head above this garbage fire to see how much more burning garbage we have to wade through, I stumbled across an article about healthcare workers with long Covid. These are medical professionals, doctors and nurses of all stripes, who report in to their literal coworkers with headaches, chest pains, and bursts of extreme fatigue. They expect their colleagues to treat them competently and respectfully, just like they think they would experienced healthcare professionals confidence in their objectivity is so strong people do studies on it. Instead, they hit a brick wall. People they trusted to recognize an actual medical condition tell them to walk it off or stop taking birth control or get therapy. Its like a magic spell: the moment they make the transition from physician to patient, other doctors and nurses start treating them like their medical training started and ended in middle school health class and confidently assign the most counterproductive treatments possible over their objections. They react to this with a sort of betrayed horror:
Even Health-Care Workers With Long COVID Are Being Dismissed posted:
[T]he skepticism of their peerseven now, despite wider acknowledgment of long COVIDhas been absolutely shattering, says Clare Rayner, an occupational physician who is part of a Facebook group of about 1,400 British long-haulers who work in health care. That people in their own profession would treat them like this has led to a massive breakdown in trust. Having dedicated their working lives to medicine, theyve had to face down the ways its power can be wielded, and grapple with the gaps in their own training. I used to see medicine as innovative and cutting-edge, but now it seems like it has barely scratched the surface, Misko told me. My view of medicine has been completely shattered. And I will never be able to unsee it.
I was laughing by the end of the article, though my laughter was very, very bitter. To these people, discovering how doctors actually treat patients was such a shock some left medicine entirely. To disabled people, mistreatment is such a given that their existential despair comes across as almost hilarious. Like, obviously #not all doctors, there are plenty of medical professionals that either know what theyre doing and treat their patients with compassion and dignity. Im talking about a whole job family, not a bunch of clones. Unfortunately, that family doesnt teach its kids how to listen. Literally: doctors dont let their patients speak very long, frequently cutting them off midsentence. But introduce any opportunity for bias and things get much, much worse.
Weve heard a few accounts of women getting mistreated by doctors in this thread, and those stories are just the tip of the iceberg. The medical community famously dismisses womens pain, refusing them painkillers when men would get them, keeping them waiting for emergency treatment longer than men with identical symptoms, and dismissing physiological symptoms as psychological so consistently it gets people killed. The statistics and that last link, though. Depression may be misdiagnosed in 30-50% of female patients The adverse consequences of incorrect diagnoses range from unnecessary expenditures of a woman's resources to potentially life-threatening medical conditions. Ironically, medical misdiagnoses of physical conditions may induce depressive reactions in female patients.
Black people, too, tend to get hit by this a lot. Something like one in four doctors still think black skin is inherently thicker than white skin, which fucks up everything from diagnoses to injections. Theyre also less likely to get prescribed pain meds to the tune of 20%, and that number isnt budging. Thats because medical professionals consistently underestimate how much pain black people are feeling compared to white people with consistently disastrous results. Combine the two and the results range from infuriating (black women get specialist referrals less than half as often as white men) to horrifying (black women are three times as likely to die in childbirth). This is all established fact, by the way; every link in the last two paragraphs leads to a published, peer-reviewed study. But that doesnt seem to stop much.
So it shouldnt shock you that disabled people, perpetual patients that we are, get hit by the same discrimination with disastrous results. I cant speak for other countries; maybe things are better elsewhere. But in America, something like 4 in 5 doctors believe disabled people have a fundamentally lower quality of life than abled people. Well, isnt that just realistic not that disabled people are destined to suffer, per se, but that they face greater hurdles to living comfortably? No, because thats not what this part of the survey was testing for. To a layman, that question is largely theoretical; yeah, we all have the power to fight ableism, but for most of us that power will never go beyond speaking up for someone or intervening in a critical situation. Doctors need to be held to higher standards, though, because they can hold the power of life or death over their patients on a day-to-day basis, especially when were talking about medication or therapies. Weve seen a couple people in this thread who get along just fine while being disabled. Plenty of abled people live lives of almost unimaginable suffering. That quality-of-life gap seems logical in abstract but its such a huge generalization you cant count on it in any individual case and thats what doctors deal in every day. The idea that disabled peoples lives are inherently less comfortable than abled peoples lives implies that compromise is the best they can hope for, that they can never reach the same level as abled people and trying to get them there is wasted effort, that you should prioritize abled people in healthcare because their lives are just not as shitty, and with limited supplies, why waste them on someone whos just going to suffer more? That question was a trap specifically to catch doctors who carried that bias, and it did, in spades.
You can see the consequences in the numbers of that same study. Remember how confident medical professionals are in their opinions? Same study tells us a bit under 60% of doctors arent that confident about treating disabled patients and only about half had no reservations about taking them on in the first place. They werent lying; when tested, a solid fifth of doctors offices refused to set up appointments for wheelchair users point-blank (including almost half of the gynecology offices they called up, surprise surprise). This is illegal under the ADA, by the way, but plenty of doctors dont understand their legal obligations around disability anyway, so that wont stop them. They dont know Jack. So the results? Double the suicide rates of abled people, the higher STD rates I talked about in the sexuality disability corner, open dismissal of pain while staring at symptoms that cause it, a whole cottage industry of books to help you convince doctors theres something going on, and best of all, a decade less to live on average.
Around 18% of doctors agree the healthcare system is very unfair to disabled people.
But thats just numbers. No one cares about numbers. I could tell you stories about people. The woman who went to a hospital in Pendleton, Oregon, was forced to sign a DNR order for herself, and was left to die until her caretakers threatened legal action. The woman who starved to death in a British hospital while recovering from a routine operation. Story after story after story. I could discuss ableism in research, like I did in the last disability corner. I could talk about commercial interests incentivize doctors to dispense treatments that cause more harm than good because theyre getting paid to. I could even talk about how insurance companies and hospital policies keep doctors from helping when they know how to do so, as this viral open letter brings up. There are so many facets to medical ableism I couldnt hope to cover them all.
But like all -isms, ableism is learned and the dominant model of medical education is tailor-made to teach it. Training and education for medical professionals fetishizes the grind it to an insane degree, creating an environment where overwork is expected and anyone who cant match it gets shoved to the wayside. This happens a lot to disabled medical professionals in training, which keeps them out of an industry they have such a close tie to: doctors are something like an order of magnitude less likely to be disabled than the general population. In med school, any kind of health issue gets you insulted, berated, and treated as subhuman, especially if actually you get any of the support you need. Medical professionals get their education and enter residency feeling this as theyre gradually initiated into this cult of health where your ability to accept extreme conditions reflects your actual medical skill. It teaches them that they need to be superhuman, and that being superhuman is what makes them medical professionals. So is it any wonder that they dismiss people less healthy than them? If your identity as a professional is built on a sense of superiority, of course you dont take your inferiors seriously.
Enter long Covid. I remember thinking, back when I first read up about symptoms and sufferers, that this could be a golden opportunity for disability activism: we now have a potentially massive swath of the population who came through this disaster disabled, many of whom probably never thought it could happen to them. If we could reach out to them, bring them into the broader disabled community and jointly press our claims, we might be able to make some real changes. Turns out, by the time I thought that theyd already made contact. See, long Covid is startlingly similar to myalgic encephalomyelitis (a.k.a. chronic fatigue syndrome), which Dareon discussed his experiences with earlier in this thread.
ME/CFS is just the kind of condition doctors like to ignore: its mysterious, extremely difficult to treat, has no clear cause, either doesnt respond or responds negatively to just about every generic piece of advice medical professionals have to offer (especially exercising to build up stamina), and causes symptoms that, while severe, are ambiguous enough they can be assigned to another condition or just blamed on the patient if the diagnostician wants. So it gets ignored. Other conditions with fewer sufferers, milder symptoms, and better treatments available make headlines while ME/CFS has its research funds disappeared into other projects and magazines call it yuppie flu. Its biggest and most authoritative study to date was a horrifying farce. A couple of British physicians convinced thousands of their peers it was literally hysteria. Yeah, that hysteria, right down to it happening mostly in women, they just changed the name. Big chunks of the medical community still refuse to believe it exists.
They sure do think it and long Covid are related, though. Hell, if the scattered evidence that ME/CFS is the aftermath of viral infections pans out, long Covid may just be ME/CFS. And activists arent the only ones to notice for once, judging by the plethora of articles out there on the connection ranging from medical journal reviews to op-eds in major newspapers. The scientific community has reacted with uncharacteristic speed and openness for a disability issue, meaning they flailed around for a while before setting aside resources to do all their research from scratch, ignoring the community instead of dismissing their experiences outright. These people barely even listen to long-haulers themselves, let alone work in research from other areas, and as such all that experience gets ignored while medical professionals prioritize their own decision-making and research skills over the experiences and knowledge of the people theyre trying to help hurting a lot of people in the process. The ableism creeps back in with predictably destructive results.
And its a shame, because medicine does not have to be ableist. Medicine, at its heart, is about improving the functioning of the human body. Modern medical philosophy has a very specific idea of what an ideal human body looks like, so its practitioners judge their patients by how close they are to it. That body is white, male, abled, cis, and more, so if you lack any of those traits, they start making faulty assumptions based on things that arent there and/or they judge any differences as deficiencies. Some doctors, even now, take a different tack. There are therapists, physiotherapists, nutritionists, surgeons, nurses, and experts from all over the medical world that either suppress those assumptions or have learned not to make them at all, some of whom are actively organizing. Right now, finding them is an enormous trial and often impossible. It doesnt have to be like this, it can change, we can make an impact. Im just not sure where to start.