I was in my almost-30s when I came home from an appointment with a new primary care doctor at a fancy concierge office ― the kind who has an app you download to schedule appointments and who takes conference calls for common colds.
Excitedly, I told my fiancé about the experience: The female doctor was familiar enough with hypermobile Ehlers-Danlos syndrome (a degenerative connective tissue disorder I was diagnosed with when I was 26 years old) that she didn’t have to Google it! She sent me home with a slew of referrals! She gave me answers when she could and promised to follow up when she couldn’t!
I felt elated. For once, my disorder’s complications and many co-morbidities didn’t frighten a doctor away. I had finally secured a functional medical team and adequate health care.
A few months later, the same incredible doctor gave me the bad news.
“Hopefully, you won’t think I’m unprofessional for saying this,” she said, “But I feel like we’ve really developed a rapport. I also have hypermobile Ehlers-Danlos syndrome. It’s not as severe as your case, but my caseload and stress of this job have caused serious flares, and I’m stepping away from medicine for a little bit. It’s just too much.”
My heart crashed and burned on the chic exam room’s linoleum floor. When I told my fiancé the news, the reality that the system had failed both patient and doctor hung silently between us.
American society has this common and pervasive misconception that doctors are infallible. When we see a white coat, we assume a combination of degree and knowledge places the wearer of that coat in an elevated position. We’ve heard stories about the grueling gauntlet that is medical school, and as such, we have a tendency to view doctors as the apex of robust wellness.
And when we put doctors on a pedestal of perfect health, the assumption quickly follows that our doctors must be able-bodied in order to adequately treat what ails us. This leads to the false presumption that disability is synonymous with inability. As Lisa Iezzoni, a health policy researcher and the director of the Mongan Institute Health Policy Center at Massachusetts General Hospital, quipped in an article for NPR, “[The medical] profession historically has viewed themselves as able-bodied in the extreme.”
There are three problems with such presumptions:
First, people with disabilities are far more capable than typically presumed by other people.
Second, accomplishing a task in a way that differs from how a person without disabilities completes it is not the same as failure.
Third, no doctor ― with or without disabilities ― is capable of performing all medical tasks.
“Running a code isn’t simply chest compressions or intubating the patient, and doctors with disabilities can perform many necessary tasks outside the realm of the physical.”
Disability is a spectrum with wide variation, and a blanket assumption that all disability of any type should disqualify a student from medical school stems directly from ignorance and ableism (discrimination against people with disabilities) without granting thought to reality. As society has worked to exclude other types of bigotry from school entry processes, so too must go ableism. People with disabilities have done every incredible thing humans without disabilities have: We’ve been presidents, senators, actors, Olympians, Paralympians, dancers, musicians, inventors, theoretical physicists, mountain climbers … You name it, we make it happen ― just maybe not the same way people without disabilities do.
People without disabilities come up with a variety of excuses for why accommodations in any number of situations should be avoided. One of the most popular? Accommodations amount to privileges.
Humans have come to equate “fairness” with “equal treatment,” but “equality” and “equity” are not synonymous. Amy Sun breaks this down beautifully in a piece for Everyday Feminism: “Equality” is treating everyone the same, which actually erases our differences and promotes privilege. “Equity” is giving everyone what they need to be successful ― including accommodations for the various disabilities that may affect one’s experience of attending med school.
Another argument against accommodations is that things are done the way they are because that’s how it’s always been; disrupting the status quo for people with disabilities runs outside the realm of norm. Yes, repetition can be a key to learning — and to mastery. But we can’t expect exceptional results if we perform tasks the same way every single time. Accommodations for med students with disabilities are just one example of looking outside the box; flexibility in one area may even shake off the dust in other areas that no one realized needed change.
“When we put doctors on a pedestal of perfect health, the assumption quickly follows that our doctors must be able-bodied in order to adequately treat what ails us.”
In the argument against including disability, many people without disabilities are all too willing to focus on the fact that medical students or doctors with disabilities may not be physically able to perform specific sets of tasks in certain situations. But running a code isn’t simply chest compressions or intubating a patient, and doctors with disabilities can perform many necessary tasks outside the realm of the physical: identifying proper treatments, monitoring a team’s actions and figuring out what the heck went wrong with a patient to begin with.
No one expects a primary care doctor to perform the work of a cardiac surgeon. Med students with disabilities should be and are capable of specializing in areas that best suit their needs and talents. So long as society is willing to accept that the potential for doctors with disabilities is limited only by the assumption of automatic inability, students with disabilities have every right to attend medical school and flourish as doctors.
The issues of ableism and accessibility in medicine raise the chicken-or-egg question. Does medicine have a dearth of students with disabilities (and therefore doctors with disabilities) because of inaccessibility and rampant ableism, or do inaccessibility and rampant ableism occur because there are not enough med students with disabilities (and resulting doctors with disabilities) to upset the prejudicial status quo?
Approximately 1,500 medical students in the U.S. have disclosed a disability to receive formal accommodations ― approximately 2.7 percent of students ― according to Elana Gordon of NPR. This number is significantly lower than the 11 percent average seen in other undergraduate programs. She writes that many students hide their disability out of fear of “judgment, bias, and skewed perception of ability.”
“No one expects a primary care doctor to perform the work of a cardiac surgeon. Med students without disabilities should be and are capable of specializing in areas that best suit their needs and talents.”
Prejudices against disability run fast and deep; a 1994 study found that 22 percent of clinicians reported they wouldn’t want life-sustaining treatment if they experienced a spinal cord injury and 41 percent said they felt their ER staff tried “too hard to resuscitate or save” patients with new spinal cord injuries. In serious contrast, 92 percent of respondents with such injuries said they were glad to be alive.
Training alongside fellow doctors who can safely identify as disabled helps unravel stereotypes about disability and facilitates learning that can be transferred to real-world settings. Increasing the number of physicians with disabilities could help improve health care outcomes for patients with disabilities; research suggests that when patients can identify with their physician, compliance increases. Increased diversity is concomitant with positive outcomes across the board, from increasing company value to augmenting accuracy in scientific research to measuring greater impact of academic papers.
Physicians with disabilities share lived experience that can inform more competent care for their patients with disabilities. By working alongside doctors with disabilities, doctors without disabilities begin the process of learning how to properly treat and interact with people with disabilities. Specific instruction that focuses on learning how to provide appropriate care to patients with disabilities will further that knowledge. Each time doctors without disabilities care for a patient with disabilities, they better learn how to provide care for the next patient with disabilities.
A primary care doctor who shares my exact diagnosis will inarguably always have a better understanding of my life experience than any doctor without disabilities ever could. Disability is not a tragedy, and its inclusion in the medical workforce is an indisputable necessity for safe, ethical and diverse 21st-century medicine.
Ace Ratcliff lives with hypermobile Ehlers-Danlos syndrome, dysautonomia and mast cell activation syndrome, which all make for a particularly rebellious meat cage. Her advocacy is centered on intersectional feminism with a focus on disability rights.