Doctors with disability reflect on challenges
Physicians with disabilities who applied to and eventually completed medical school reflect on the progress and accomplishments offered by the Americans with Disabilities Act during the past 30 years.
Paralyzed in a diving accident at age 14, ACP Member James Post, MD, would not walk again. But he was still determined to become a doctor.
Nearly three decades after fighting to be accepted into medical school, Dr. Post is now a nephrologist and chief of internal medicine at the James J. Peters Veterans Affairs Medical Center in New York City. When he cares for patients, he said it's almost as if the wheelchair disappears: “They just don't even see it anymore. They see me as their doctor.”
That's because patients can see he's been a patient himself, he said. “I've been in their place before,” he said. “It's not like I'm walking in and brushing them off; they know that I know what it's like to be on the other side of the stethoscope.”
The road to becoming a physician is challenging for anyone, let alone people with disability. While many medical school applicants face fear, doubt, and rejection, applicants with disability also have to be their own advocates, creating and requesting personal accommodations and educating those around them.
Today's students, trainees, and physicians with disability have more support than in the past, but there's still room for improvement. Physicians with disability who applied to medical school in the '80s, '90s, and '00s discussed their journeys, revealing a constellation of progress marked in large part by the Americans with Disabilities Act (ADA), which went into effect 30 years ago this July.
A new era of accommodations
The idea of accommodating medical students with disability is relatively new, said Lisa Iezzoni, MD, MSc, a professor of medicine at Harvard Medical School in Boston. She attended medical school in the early '80s, well before the ADA was enacted.
Dr. Iezzoni called her experience in medical school at Harvard a “pre-ADA cautionary tale.” She was diagnosed with multiple sclerosis at the end of her first semester in 1980. During the first two years she had periodic relapses, and she began using a cane in her third year. She graduated in 1984, a time that she notes was “pre-Oprah.”
“People didn't share information about their personal health,” said Dr. Iezzoni. “It was a private matter back then. Plus, I was embarrassed. I would try to hide from patients that I was using a cane.”
That time in medicine was different in other ways, with a more rigid sense of hierarchy and no 80-hour work week, she said. For instance, when Dr. Iezzoni's neurologist told her she couldn't stay up all night during clerkship, her surgery attending chided her, saying she had no right to be in medicine.
Rather than feeling indignant, she felt invalidated. “I was dealing not only with symptoms that were sometimes pretty terrifying, like not being able to walk at all, as well as just outright invalidation by almost every attending physician who I had and almost every resident who encountered me,” said Dr. Iezzoni.
When it came time for her to graduate, the medical school decided not to write a letter for her to apply for an internship or residency. Without that letter of support, she couldn't apply at all. “Basically, they engaged in a practice called constructive dismissal by the lawyers, which nowadays would be considered discrimination,” said Dr. Iezzoni. Unable to train to practice medicine, she pursued health policy research and in 1998 became the first female professor in the department of medicine at Beth Israel Hospital in Boston. “It took a while to pick myself up and dust myself off and get going, but I was very fortunate that I was able to do that,” she said.
In contrast to her experience, she said today's students and their needs are top of mind for medical educators. “When I see how their needs are very much in the forefront of discussion—personal needs as well as academically—it's totally different than back in 1980,” Dr. Iezzoni said. “And all for the better.”
But the ADA was no panacea for prospective doctors with disability. In the early '90s, when it came time for Dr. Post to apply to medical schools, he was rejected by all 10 Pennsylvania schools he applied to, even with his 3.92 GPA and above-average MCAT scores. Because he was living with quadriplegia and using a wheelchair, it was clear that the technical standards delineated for applicants by medical schools, which required physical tasks such as drawing blood, performing CPR, and delivering babies, were the main barrier.
After that first round of rejections, Dr. Post dedicated himself to volunteering and taking some courses in biochemistry. He also allowed his story to seep out into the media, in outlets ranging from his local newspaper to The New York Times. Initially, he was afraid to do this. “I thought that it would give the impression that I was just a troublemaker and I really wasn't genuine in my interest in becoming a doctor,” said Dr. Post.
After he appeared on talk shows, his luck changed. Albert Einstein College of Medicine in New York City was willing to be flexible with the technical standards, allowing Dr. Post to use an assistant. During medical school and residency, he worked with either a nurse or a physician assistant to complete some physical components of his training.
“I was very thankful and very happy that they gave me the opportunity to actually study medicine and get my MD. … They focused on my abilities instead of my disabilities,” he said.
Fast forward to 2002, when Nathaniel Gleason, MD, FACP, was applying to medical schools. He has a genetic recessive condition called achromatopsia, which is the absence of functioning cone cells on the retina. This carries three implications: extreme sensitivity to light (he wears dark contact lenses and dark sunglasses), no color vision (he sees in black, white, and gray), and low visual acuity (his vision is 20/400, which qualifies him as legally blind). “The thing that matters most is the acuity,” said Dr. Gleason.
Thus, as with Dr. Post, the technical standards were the main barrier. They explicitly required medical students to perform functions requiring normal vision, such as the use of a microscope. “The official message a prospective applicant with a disability encountered in 2002, 12 years after the ADA, was, in no uncertain terms … ‘You can't come,’” said Dr. Gleason, an associate professor of clinical medicine at the University of California, San Francisco (UCSF). “Many, though not all, medical schools now add to these lists of required functional abilities the brief but crucial phrase, ‘with reasonable accommodation.’ That is a monumental difference.”
Accommodating a student with a disability takes overcoming the false ideal of pluripotency—that is, that every applicant should have the potential to become any kind of doctor, he said. “It's hard from that starting place for some physicians and medical school administrators to look at a candidate and say, ‘She has the strengths to be a great doctor, even if her particular set of abilities and disabilities makes certain fields of medicine less likely to be a great fit,’” said Dr. Gleason.
UCSF was open to finding workarounds. While classroom coursework during the first two years went well, Dr. Gleason had to get creative with inventing his own accommodations. For example, he would take anatomy tests before the rest of the class, walking around with the instructor and sticking his face “preposterously close” to the cadaver to identify anatomical structures.
The most challenging bit was the clinical part of training, Dr. Gleason said. While he had taken tests and learned information throughout his life, the logistics involved in caring for patients made for a totally different experience. “Navigating different hospital and clinic rotations was incredibly challenging,” he said, noting examples such as the ability to recognize a particular nurse, quickly scan a stack of records, or see displays in the ICU.
Of course, that also made residency a challenge, although training was made possible through continued basic problem solving at UCSF, Dr. Gleason said. These days, he uses modifications to read the computer and the EHR, such as a magnifier for written text and a large screen and low resolution so that the record is as large as possible.
Overall, those interviewed for this story agreed that the most meaningful progress that could be made for doctors with disability is for them to be “no big deal” at some point.
“I would like for it to be the norm. … That would mean that this wouldn't be a story anymore because it wouldn't be so novel that it would warrant a big story,” said Lisa M. Meeks, PhD, coauthor of a March 2018 Association of American Medical Colleges report on accessibility, inclusion, and action for people with disability in medical education.
The report featured interviews with 49 medical students and physicians with disability. Initially, the aim was to interview five students, five residents, and five physicians. “I received over 200 emails from people willing to be interviewed,” said Dr. Meeks, an assistant professor of family medicine and director of MDisability, an educational initiative at the University of Michigan in Ann Arbor.
To emphasize that physicians with disability aren't as rare as they may seem, Dr. Meeks co-developed a social media campaign, #DocsWithDisabilities, profiling physicians with varying specialties and types of disability. “The problem is people think it's a one-off. For the most part, people believe that there is this one great guy or girl that overcame all the odds to become a physician. … People think there's one or two physicians with disabilities, and there are literally thousands,” she said.
In fact, one in four—61 million—U.S. adults has a disability, according to a CDC analysis published in August 2018 by Morbidity and Mortality Weekly Report. Plus, there are signs that more people in medicine are disclosing their disability. In 2016 and 2019, researchers surveyed U.S. allopathic medical schools to assess the prevalence of students with disabilities. Among 64 schools that responded to both surveys, 2.7% and 4.6% of medical students disclosed a disability in 2016 and 2019, respectively, a 69% relative increase, according to results published in November 2019 by JAMA.
This is likely due to a confluence of factors, such as national improvement efforts, media attention, and a generation who are comfortable with, or even proud of, their identity as people with disability, said Dr. Meeks, lead author of the study. “At the same time, these learners know their rights and have a history of appropriate and reasonable accommodation. They are not afraid to ask for what they need to gain equal access,” she said.
While the motivation for disclosing a disability remains unclear, the numbers may indicate that more students are receiving accommodations for standardized tests, which is a legitimate and welcome trend, Dr. Iezzoni said. “Students nowadays feel that there's more of a benefit to disclosing than a cost than previously, and I would like to know what they view that benefit as,” she said. “My hypothesis is that it may have to do with accommodations around all the standardized testing.”
Technical standards are set by individual medical schools, but residency programs have a more standardized approach to access for trainees with disability. The Accreditation Council for Graduate Medical Education (ACGME) has two specific common requirements: The institution or sponsoring institution for the residency program must follow federal law in terms of providing accommodations, and the residency program must provide accommodations for residents with disability consistent with their institutional policies.
The second requirement took effect in 2018. It may seem like a small change, but it's an important one, said Christopher Moreland, MD, MPH, FACP, a hospitalist and associate program director of the internal medicine residency program at UT Health San Antonio. “Now we have policies that apply to all GME programs across the board across the entire United States. … I think that's one step towards providing a more standardized and supportive approach for current and future residents and physicians with disabilities.”
Dr. Moreland, who was born Deaf, said that the choice to disclose a disability while training to be a doctor can be intimidating, and the fact that more students are disclosing disabilities is encouraging. “We need to start with identifying who those individuals are and identifying where the need is,” he said. “From there, we have to engage in conversations with each of those individuals who requested accommodations in terms of what those accommodations look like for them, because each person is going to be different.”
Over the past several years, many medical institutions have addressed diversity, equity, and inclusion. “I think those efforts have been admirably focused on race, ethnicity, gender, amongst other things, and disability is an area that is unexplored,” said Dr. Moreland, who is also president of the Association of Medical Professionals with Hearing Losses. “I anticipate that's going to change greatly.”
Dr. Gleason agreed that disability is behind other civil rights struggles with regard to recognition and inclusion in those conversations about diversity. Still, “The overwhelming majority of people will have a disability at some point in their lives,” he noted.
Plus, the literature on diversity has shown that patients often have a more positive experience and better health outcomes if they're able to work with physicians who look like them and share their communication style, and life experiences, said Dr. Moreland, speaking through an interpreter. “I think that same idea applies to physicians with disabilities.”
Most clinics and hospitals are designed not with accessibility but with workflow and staff in mind, all of whom are seemingly presumed to be nondisabled, said Bruce (BJ) Miller, MD, a palliative care physician at UCSF. After an accident in college, he lost both legs below the knees and his left arm below the elbow due to electrical burns. “Living with illness or disability is harder—more isolating—than it needs to be, largely because, by way of our constructs and our infrastructure, we tend to exaggerate the gap between sick and well, disabled and able,” said Dr. Miller.
For physicians who don't currently live with a disability but may become disabled in some way, he recommended paying attention to the details of the experience of patients with disabilities and avoiding rationalizing that this is the way it has to be. “Not only will you be doing your patients a great service with heightened understanding and empathy, but you'll also be preparing yourself for when your own time [as a patient] comes,” Dr. Miller said.
On a practical level, Dr. Post said it's prudent to tailor your practice to your strengths and limitations. For tasks you can't do, incorporating nurse practitioners or physician assistants can help. “You can supervise them in that role, and you can still participate in the care,” he said. These days, a medical staff assistant in the clinic helps Dr. Post get his stethoscope on and will place the stethoscope on the patient's chest, and he works alongside a nephrology fellow on inpatient rounds.
For Dr. Miller, living with a disability is not about “overcoming” something but learning to adapt to and live with it. He chose palliative care because he was interested in working with people who were confronting all they couldn't control, rather than in “fixing” them.
“One way or another, the truth is that everyone struggles with the vagaries of daily life, in general, and all of us need to depend on others,” Dr. Miller said. “This is a point in common, not division, and the sooner we realize that fact … the better for all.”