From Stigma to Strength

By Madeleine Burry
September 27, 2024 | VOLUME 2, ISSUE 3

Lisa M. Meeks, PhD, MA, is on a mission to transform narratives around people in the medical field with disabilities.

As an expert in the field—Executive Director of the Docs With Disabilities Initiative and Principal Investigator of the Meeks Lab—Dr. Meeks knows there are thousands of people with disabilities in medicine. But she also knows that most people in the medical field aren't typically aware of these stats.

That’s because many students, residents, teachers, and clinicians with disabilities keep that information private.

In a 2020 survey of medical college graduates by the Association of American Medical Colleges, 7.6% of respondents had a disability, yet the vast majority of that group—74.1%—did not request accommodations. There’s a growing number of medical students with disabilities, from 2.7% in 2016 to 5.9% in 2021. Meanwhile, a 2021 survey study found that 3.1% of physicians self-identified as having a disability.

But the data understate how many practicing physicians have disabilities, said Dr. Meeks, whose lab originated much of this research.

“The true scope of the workforce when it comes to [physicians with disabilities] is not accurately represented,” Dr. Meeks said. That’s true for the numbers of students, too, she said—far more students have disabilities than who disclose them.

Encountering one physician during training, or one peer, with a disability can be illuminating. “But it doesn’t do anything to change the narrative that disabled people can and do live fulfilling lives in a myriad of employment context, not just in medicine or health care,” Dr. Meeks said.

With more disclosure, the stigma can lift, allowing for better outcomes for individuals and even positively influencing patient care.

Why disclosure isn’t more common

There are, of course, people in the medical field who are open about having a disability.

“I don't recall ever not being willing to discuss or disclose,” said John Gaudet, MD, of his time in medical school. After practicing as a pediatrician for more than two decades, he’s now an Associate Professor at William Carey University College of Osteopathic Medicine. “It is immunizing to partners and staff to occasionally bring up little bits of disclosure,” he said.

But for those who opt not to disclose, a number of potential factors can lead to the hesitation:

Stigma and bias: For first-year residents, fears of stigma and bias were a common reason to hold off on asking for accommodations, according to a cohort study. People may have concerns about missed opportunities, stalled careers, or rejected applications.

Not feeling ready: Some people may not initially think of themselves as having a disability or needing accommodations. “People come to disability from so many different spaces and experiences and on different timelines,” Dr. Meeks said. More than a decade ago, she was diagnosed with a degenerative disease. “I didn’t disclose for a long time,” she said. “When I started disclosing, I did it in very safe environments, and, now, because it's out there enough, there's a lack of safety.” People may also question their worthiness for accommodations, and  be concerned about other’s opinions. Within both the medical profession and the disability community, there can be judgement, Dr. Gaudet said. “We (the collective 'we') are prone to compare abilities, wondering if someone is 'disabled enough' to deserve accommodations,” Dr. Gaudet said.

Logistics: The cohort study of residents found that unclear processes to request accommodations also led to a lack of disclosure. Another logistical matter: Some students didn’t readily have documentation around their disability.

A desire to be safe: “There could be risks to personal safety. There could be risks to job security. That's a big one,” Dr. Meeks said. Compared with their peers, physicians with disabilities receive more offensive remarks—both related to their disability and otherwise—as well as threats of harm and sexual advances from coworkers and patients, according to a 2019 study in Health Affairs.

“Disclosure is really a personal decision,” Dr. Meeks said. Both as an individual and as a representative of the Docs With Disabilities Initiative, she “fully respects and honors the individual right to choose whether or not to disclose a disability.”

And yet, she adds, “Disclosure is critically important.” It’s the path to normalizing the presence of students and clinicians with disabilities and reducing the threat of stigma and bias.

“While I do not put any pressure on any one person to disclose, I firmly believe that without disclosure and more frequent disclosure in larger numbers, we will not change the narrative,” Dr. Meeks said.

The manifold benefits of disclosing a disability

Revealing disabilities is transformative—to individuals, to the medical field, and, ultimately, to patients.

First off, revealing a disability improves well-being. “If you are not able to bring your authentic self to a space, it increases your stress and anxiety,” Dr. Meeks said. For those with chronic illnesses or not readily apparent physical disabilities who opt not to disclose (think: mental health disorders or neurodivergent conditions), the masking and compensation required are mentally and physically exhausting and can lead to burnout, Dr. Meeks said.

This is backed up by her research. “Learners who do not disclose a disability because they do not feel safe disclosing a disability have higher rates of depressive symptoms and, unfortunately, have higher rates of medical errors,” Dr. Meeks said.

Plus, prioritizing privacy often walls individuals off. “If you're constantly having to mask that disability identity, you are limiting your opportunity for community and limiting your opportunity for support,” Dr. Meeks said.

Keeping a disability hidden limits people’s ability to request accommodations, which, in turn, is a barrier to reaching their potential or fully participating. For instance, Dr. Gaudet recalled that during his surgery rotation in medical school, his team walked up to each floor in the hospital as they did their rounds. “I was able to attempt to do this but was winded and unable to speak when we arrived,” Dr. Gaudet said. The solution was simple: He asked if they could take the elevator instead of the stairs.

Openness about disabilities makes it possible to push for systemic change, Dr. Meeks said. “If you're not disclosing, you don't then have a platform to advocate for systemic change that could benefit not only you and your experiences but other clinicians with disabilities or your patients with disabilities.”

Embracing the reality of a disability can also help normalize disabilities to others. After practicing as a pediatrician for 11 years, Dr. Gaudet began using a wheelchair. “If I met a new patient in the hospital, for instance, I would talk randomly for a few minutes while they absorbed the sight of a doctor in a wheelchair,” he recalled. He also put up photos in exam rooms of him doing everyday activities—spending time with his family or playing wheelchair tennis.

Additionally, not disclosing can reinforce stigmas associated with disabilities, Dr. Meeks added. Revealing late in life can suggest that disabilities are something “you should hide...until you cannot hide it anymore,” she said. Doing so “contributes to a culture of exclusion and silence around disability and disability-related issues.” In contrast, disclosing opens the door to being a role model.

Put simply: When people don’t disclose a disability, it’s a missed opportunity.

The benefits of disclosing extend beyond individuals and the medical field to patients with disabilities. When clinicians see patients holistically—and not as a disease or condition in examination room 3—it leads to better care.

That matters. More than 1 in 4 Americans have a disability. Yet, less than half of US physicians feel “very confident” about their ability to provide the same quality of care to patients with disabilities. That may be somewhat due to their offices, which often lack equipment, such as an exam table with an adjustable height or a scale usable by someone in a wheelchair. Embracing change in the exam room can be tricky, but it may well be easier than expected. “I had to give a lot of direction to my hospital employers about clinic accommodations for the chair, and they were gracious about it. My accommodations were not very expensive,” Dr. Gaudet said.

The inequities present in most medical spaces contribute to why people with disabilities are often underserved in health care and experience health disparities. Exposure to people with disabilities may prompt doctors to reassess their space, implementing changes to make it more accessible.

“Daily interactions with people with disabilities is the best form of disruption,” Dr. Meeks said. It helps clinicians view people with disabilities as peers, not objects of pity, with thriving lives complete with relationships, jobs, children, and hobbies. This framework shift is more challenging if doctors encounter people with disabilities only in acute care situations, she said.

When clinicians move beyond generalizations, they provide better care. Instead of talking to a patient only about their disability and limitations, they may ask psychosocial questions. For patients, being approached with interest—not judgment—leads to better conversations, Dr. Meeks said. “It builds a more honest, fruitful relationship between the patient and the provider,” she noted.

Dispelling assumptions can also be lifesaving. For instance, there are disparities for people with disabilities receiving HPV screening tests. That may be partially due to a lack of necessary equipment. Another factor may be false assumptions about an individual’s sexual activity made in response to knowledge of their disability.

How to be a better ally

Data show that stigmas around disabilities persist. Many in the medical field neither disclose disabilities nor request accommodations. But Dr. Meeks sees reason for hope: “The research supports that the numbers are growing” for medical students disclosing disability, she said. And anecdotally, Dr. Meeks finds newer generations of students more comfortable and self-aware about disability.

If you’re a student, clinician, or person in a position of power in the medical field, there’s much you can do to be a better ally. Dr. Meeks has some suggestions:

• Check your own biases: “We’re all ableist,” Dr. Meeks said, including herself in that statement. “I have a disability. I do this work every day. I love the idea of changing the landscape.” And yet, she still sometimes needs to interrogate her reflexive responses. Dr. Gaudet also acknowledged having a bias. “I'm not proud of that fact, but it is true,” he said, noting that when he took an implicit bias test, it revealed a bias against people with disabilities. “There is a pervasive societal belief that if there is something wrong with your body, there may be something wrong with your mind as well. Physicians, even disabled physicians, are not exempt from this belief. This is a pain point for me,” he Gaudet said. There’s no quick fix to end ableism, Dr. Meeks said. It’s a daily exercise. “When you are confronted with something that has a disability element, ask yourself about the feelings that come up for you automatically,” she suggested.
• Fight for access: It shouldn’t only be people with disabilities working toward creating access, training spaces, and employment opportunities, Dr. Meeks said. “Start to ask yourself, as you're navigating your own clinical setting and your own curriculum, ‘Is this accessible to everyone?’”
• Be an accomplice: Move beyond being an ally to an accomplice. “Use your privilege to push for change,” Dr. Meeks said. “It is more likely that people without disabilities are on the committees and at the tables and making the policy decisions. Advocate there, where all of your privilege of not [having a disability] is present,” she said.

Disclosing disabilities delivers a positive ripple effect to patients and the field as a whole.  It allows individuals to act as advocates and role models, and it makes participating in the field easier for those who haven’t yet entered medical school.

“We need to have more stories, which means we need to have more disclosure, which means we need to create safe spaces for that disclosure,” Dr. Meeks said. “It's all just a big circle.”