Ableism in Medicine: Why We Need Disabled Doctors

It’s very exciting to be getting a new medical school.

It would be more exciting if the hospitals needed to train them weren’t on the verge of losing their licenses due to understaffing issues, and if the cost of such a school wasn’t coming at the expense of the health of the population of the entire lower South Island. But the North Island needs more doctors, and who cares that we’ve already got a perfectly good medical school in Dunedin that is going to struggle to turn out high-standard doctors when they don’t have the needed support or facilities or hospitals in their regional health system.

Screw the South Island, right?

That distraction makes it very hard for me to turn focus to the issue I would like to use this opportunity to talk about: the exclusion of disabled doctors in the field of medicine.

You know the saying “Nothing about us without us?” That’s a disability concept that, until this government came along, the New Zealand disability community had made incredibly inroads towards, baking the empowering philosophy into our disability system at a foundational level, most notably with the Enabling Good Lives programme that saw our world-class disability support system pilot rolled out nationwide. “Nothing about us without us” has become a rallying call for disabled people everywhere who have been excluded from making decisions regarding themselves and their own communities.

And without disabled doctors included in that, it’s nothing but empty words.

There are certain modes of disability where students and prospective students facing barriers would be fully supported (or near enough) getting into the profession: a mobility disability, for example, such as amputated or a wheelchair user without many other limitations, may face barriers, but they are not so likely to be overwhelmingly exclusionary. However, for a large subset of disabled people, attained a doctorate of medicine is as unachievable as making it to the moon.

Which is to say, it’s not impossible. People have done that, after all.

But it sure as hell doesn’t produce very many of us.

Cognitive and psychiatric disabilities are the disabilities I have, so these are the ones I will talk about the most, but these ideas apply equally to any physical disability, such as ones that affect energy levels or cause students to need extra health days off. And — especially — any disability by which a student would benefit from not being in an ultra-competitive placement system that requires students to achieve at a full-time study rate set by neurotypical, able-bodied students with a much greater capacity to do that study.

There are many disabled people out there who are perfectly capable of attaining medical degrees, but would need to study and work part time, or take longer to finish the degree, or who need accomodations beyond what a university will traditionally provide. There are people able to achieve and practice with full competence, but are not able to do long shifts, or who need specific accomodations to do those shifts that the medical field is reluctant to or refuses to grant them.

Psychiatry at the Margins discusses the issue of unsuitable tertiary accommodations and the difficulty there is in speaking about the subject without offending, or worse, actively disenfranchising, many disabled people. Alan Levinovitz wrote a controversial article on the subject, and is interviewed about his publication and the reaction it received.

Reading Levinovitz’s article, it is clear to me why people have had the reaction they have — dare I say, clearer than it is to Levinovitz himself, who doesn’t seem to acknowledge that several things he says are frankly tone deaf considering he is proposing adding into education barriers than many of us are already experiencing in these systems and are actively trying dismantle right now.

I received my diagnosis for ADHD at the end of my second year of university, when I was 19 years old. I had strongly suspected I had ADHD since early highschool, but back then, missing instructions or information in class didn’t really seem to restrict me that much, as I was perfectly capable of seeking the material on my own at a later point, and things in high school are often repeated.

But this was not so when I got to university and began Law School, where I was given the privilege and opportunity of being lectured by the New Zealand’s top legal academics, many of whom had written the textbooks that we were studying from. The information they provided during lectures in addition to what was in the written texts was invaluable and necessary, and it became very hard studying subjects where my focus had drifted away twenty minutes into the lecture, never to return.

(I would later come to understand part of this was also autistic overstimulation).

I sought an ADHD diagnosis in university for two reasons: it was the only way to access medication, which seemingly promised to help my struggles, and secondly, because without a diagnosis of something, the Disability Support team were unable to provide me with any accomodations at all. Despite already having diagnoses of depression and anxiety that can cause similar impairments.

I wasn’t sure what I needed to help me, but I knew I needed something, so I asked my GP to be assessed under public health and spent six months waiting to be told that no, they would not assess me. That was my entire first year of university gone, while I remained unhelped.

Private diagnosis is expensive, not the sort of thing a typical university student can afford easily. As it was, I had to pick between assessment for ADHD and autism because I couldn’t afford to pay a psychiatrist or psychologist to also consider both — so as a result, I wouldn’t receive my autism diagnosis until a decade later when I was going through a severe mental breakdown (this is despite autism and ADHD being the most common comorbidities for either condition, and in my opinion patients should be assessed for both every time).

I managed to get an assessment at a much lower than usual price via the University of Canterbury psych center by a trainee psychologist working under a supervisor. It was a very thorough and involved a barrage of intensive interviews and psychometric tests; even without the eventual ADHD diagnosis, taking the tests and discussing how I’d performed in them with the psychologist taught me a lot about how my brain was laid out.

Allow me to give you a bit of a tour.

My executive functioning is shot. I can solve complex mathematical problems in my head, but I under testing I stumbled often over simpler ones as the lack of a challenge they presented caused my brain to disengage.

I took an IQ test that measured my abilities in different areas and sought to take an average from them in order to give me an overall score, but my scores were so incredibly far apart that the psychologist said she almost hadn’t been able to get an average. My language abilities sit in the 99.7th percentile (not a shocker, perhaps, given that you’re reading this), which is to say that out of a hundred people selected at random, I can expect to be operating at a level above 99 of them. Meanwhile, my spatial skills sit in the bottom 1%, which means out of a hundred people, I can expect to be operating at a lower level than all of them. (This perhaps explains why I have serious trouble telling left from right, and I suspect originates in my autism more than my ADHD — other common symptoms of this discrepancy might include an inability to read clocks).

My working memory was similarly poor. My “processing speed” is also pretty irregular across the board — I can think quickly, especially when engaged, but I can’t shift focus fast at all, in fact this usually causes me to falter and takes me considerably longer than the average person to compute.

I explain this to help you understand how generic university accomodations are supposed to help people with neurodivergencies, especially ones like ADHD which is one of the most common disorders in the general population when accounting for the undiagnosed amongst us, of which there are many.

Universities generally offer you accomodations that include extra time, quiet rooms for testing, and reader-writers for tests and lectures.

For ADHD, reader-writers stop students from having to switch between note-taking and listening, and the notes they took would assist when I ‘zoned out’ during lectures. Extra time during exams would help with my slow processing speed, so that I am not disadvantaged by the need to comprehend many questions at a slower pace than my peers. A quiet room would, in theory, keep me from being distracted.

By the time I received my diagnosis, none of these were a help to me.

I was studying Law, so I was taking tests that involved two or three essay-based questions; I did not need extra time to process them like I would have a test with 20 questions.

While ADHD comes with distractibility, it is also accompanied by the ability to enter a state called hyperfocus, which means that when something does engage me, I have such an extreme focus that the outside world pretty much ceases to exist. This was very handy during university, and while I couldn’t control it, my hyper-focus was generally triggered by high-stakes, high-engagement situations — so exams, and essays that I’d left unstarted up to a day before the deadline that I could rush through in a night and still do better than if I’d spent weeks on it. Such is the power of hyperfocus. It was genuinely better and easier for me to leave an essay until the last minute and allow the stress to send me into frantic overdrive to finish it than it was to attempt to start essays and assignments early and struggle through those long periods of wavering attention because my brain felt that it just wasn’t quite important enough yet to require my full focus — and so it became difficult to give it any focus at all.

This last-minute-assignment pattern has instilled in me some seriously harmful learned behaviours that my counsellor informs me I’m going to have to spend a lot of time and effort undoing.

But regardless, this reality of ADHD meant a quiet room was unnecessary, as were extended deadlines for essays — extensions only told my brain that actually there wasn’t as much pressure to get it done, and so I never used them.

And a reader-writer might have helped me at the beginning of university, but by my third year, when I had my diagnosis and therefore my ability to access supports, the overstimulation I experienced on campus and my heightened anxiety and depression had given me problems with showing up at all (and reader-writers could only be used for lectures you also attended — they’re not there to take the lecture for you).

When I started the University of Canterbury, the university had just initiated an online lecture streaming and recording service named Echo. It was not strictly an accessibility system, but it certainly was designed to also provide accessibility for disabled students. The ability to rewind, for example, or revisit lectures where I’d spent the final fifteen minutes gazing at a drawing pin on the ceiling instead of the listening to the lecturer, would have been invaluable.

Would have been. Because Canterbury University, in their infinite wisdom, saw fit to claim the copyright of any material presented through the Echo service.

This meant most lecturers were not only totally unwilling to use Echo, many of them were actually unable to. Remember how I said my lecturers were writing the textbooks we were using? That’s not something they could do if the material they developed while teaching was copyright-claimed by the university because they’d decided to use a proprietary software to record lectures content. Lecturers were just not willing to open themselves up to that legal issue, and I don’t blame them.

Already there are two issues presented here: university accomodations are almost entirely inaccessible to the undiagnosed (which if you have ADHD, is more likely to be the case than not), and the generic accomodations that are offered for ADHD, autism, dyslexia, etc aren’t really addressing many of the problems people are facing.

What I needed most was those recorded lectures, something that was already offered but not actually implemented properly, and so had become entirely useless for myself and the rest of the university, neurodivergent students and neurotypical students alike. Recorded lectures that could be paused and replayed and watched at any time would have solved so many things: my issues with attending class (caused by autism, depression, and anxiety), my issues with focus (ADHD), my auditory processing delay (ADHD/autism), my unpredictable processing speed and executive functioning problems (ADHD/autism/depression), and even my serious ADHD-caused sleep disorder that I was at the time receiving an ultimately-unsuccessful “light therapy” trial for (again via UC psych — bless studying psychologists and the access to mental health help they provide!).

If I knew then what I knew now, I could have been such a good advocate for myself. But I didn’t, so I wasn’t, and I left after my third year.

These were the struggles I had in a degree field that played to my strengths and my interests, and that likely would have given me accomodations had I been better positioned to access them. You can study to become a part-time lawyer. You cannot aim to become a part-time doctor.

I cannot imagine the hell that would have been attempting a medical degree while neurodivergent. I am confident that I am totally capable of learning the material and passing the required tests, given my own space and time to study them in, and were I supported in the ways I needed to be supported (which is not necessarily the ways universities will support people).

I’m also confident I could never do that within our the current university system.

And it’s not that I want to go into medicine. But I do want people like me to go into medicine. It’s not just about equal opportunity for disabled people in picking our careers — it’s so much more vital than that. Lived experiences MUST be represented in the heath and disability fields, and it is not enough to say “Well doctors have to be the best of the best”, or “Medical degrees are very expensive, so we must save them for our most productive people who are capable of doing lots of long shifts and overtime”.

Because that’s the other half of the issue. Extreme demands for med school studies are in part to prepare students for the extreme hours they will pull as doctors; shifts that people with health issues and disabilities could never pull off but would be fully expected to at risk of not “pulling their weight”. They are hours designed to induce burnout, and as someone recovering from serious autistic burnout and the toll it took on the rest of my mental health right now, I have to recognise that for me personally, those sorts of jobs are not something I can risk anymore. They come at the cost of my health and with a very real risk to my life.

Someone with chronic fatigue or long covid should not be excluded from medicine. Someone with lupus or Crohn’s should be able to become a doctor. Someone with autism and ADHD should not have to consider their limitations and know that becoming a doctor is just too far beyond them and their disability. Not just because disabled people deserve the same opportunities as everyone else, but because disabled people deserve to be treated by doctors who understand them. We NEED advocates within the field of medicine to speak for us, to steer the practice in the right direction.

Letita Tomaszewski is a medical student who writes about how she went into medicine because doctors would not believe her about her symptoms, and she needed to access a diagnosis for what would turn out to be an auto-immune disorder.

As someone who now knows way too much about the different clinical trials for antidepressants, and about my disorders that were not picked up in childhood and were so only recognised after I had already diagnosed myself with them (you have to be pretty confident you’re right before you spend that much money to be told whether you have it or not), her story feels very familiar to me.

Discrimination in medicine starts with medical school admissions. Technical standards ensure denial of applicants with a lack of “normal abilities.” This view, termed “ableism,” believes that providers who cannot meet these exclusive high standards are devalued, and are not fit to be physicians. Although not based in scientific research, these standards exclude people with disabilities from becoming doctors. Recently, the American Association of Medical Colleges has denounced these standards, and now recommends medical schools changing them to reflect inclusivity.

Subsequently, student classes do not fully represent the disability community, as only a roughly estimated 1 to 2 percent of medical students are disabled. Those that make it in with disabilities, face discrimination at every step along the way. Schools review accommodation requests from students internally, in private meetings, on the basis of whether the requests are “reasonable”. Grading is determined by comparing students abilities against other “normal” students.

Stephanie E. Moss writes about how her endometriosis and anxiety caused her additional difficulties that non-disabled students did not have to face, causing her to narrowly miss testing benchmarks and perform below her full capabilities.

I failed my Step 1 medical school board exam by 1 point. This was very hard for me to process, and I consistently wondered if I would have passed if I had just waited an additional week. This new challenge led me to reach out to a new resource: the disability office.

Never before had I considered my medical diagnosis of endometriosis and anxiety as a “disability.” I had obviously done well enough to graduate college and get into medical school. Although, I never seemed to be able to achieve top grades in my class. I had always believed this was an explanation for being less intelligent than my peers. However, the disability office helped me realize that the standardized testing system was not equitable and did not allow me to do my very best in these exams. Through this experience, I realized that I do have a disability. All a disability means is that one is not able to achieve what other people without the disability can achieve.

This article by Vinay Prasad discusses health accommodations from a non-disabled medical perspective, including an example where a person with ADHD who was given permission to do “only” a nine-hour workday. This accomodation makes a LOT of sense — fatigue makes difficulty concentrating worse, and ADHD people are already struggling more than is typical with that. Given distracted doctors kill, I actually want ALL my doctors to go home after a nine hour workday, not just the ones with ADHD.

I asked 15 doctors in training from around the world what they thought about the 9 hour work day. They all thought it was ridiculous that this exemption was granted, and worse that it was made using the provision for people with disabilities.

One raised the issue of character. Making this request reflected character that is not in line with the dedication needed to be a physician.

Another raised the issue of residency. What would happen then? Would other residents be burdened with picking up extra duties. How could the student complete a night shift?

…

In today’s example, students are being permitted more and more accommodations and even those that threaten the very core character and commitment needed to be a doctor. In both cases, who do I fault? The students?

No. I fault the administrators. Students are expected to have excuses, but the person who grants them is the problem. While I understand that schools will be reluctant to challenge the standing of a disability exemption, schools must. They should fire up their legal team and push back. If you can’t work more than 9 hours, then I am not sure any field of medicine suits you. Dermatologists, psychiatrists, and allergists all have busy days. All residencies run longer. One day, at the 8 hour and 45 minute mark, someone will walk in your office with crushing chest pain or difficulty breathing or feeling faint. Your answer cannot be to walk out.

I think this opinion accurately reflects the non-disabled medical field’s perspective on physicians with disabilities. Being disabled, being physically unable to do the same workload as everyone else, makes you unsuitable for the practice. You should not get your accomodations, nor should the field of medicine become more worker-friendly for everyone in order to allow more people to practice medicine.

In other words, that being disabled makes you inherently unfit to be a doctor.

I would argue holding opinions like that makes you considerable more unfit to be treating disabled people than requiring accomodations for your ADHD.

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I wish I had the time or the energy to campaign for disability inclusion in medicine. Instead, thanks to NZACT, all our time will be wasted campaigning to instead continue having medicine in this country

In mental health, disability and addiction services, support workers with personal experience in these matters are highly valued. The perspective they provide, and the understanding they have for clients with similar issues, is something that cannot be matched by training a workforce of non-disabled people. They are an asset as practitioners and as a part of the wider workforce where they promote understanding and empathy amongst their colleagues.

I can’t understand why we wouldn’t also want that for doctors.