Ensuring the Future of Pediatrics Is Inclusive of Disability Free

Seventeen years ago, I was asked that question and others by medical school professors in admissions interviews and throughout my medical training. I must have had the “right” answer because somehow, I was admitted to medical school and later, a pediatric residency in a time at which <1% of physicians disclosed a disability.^1,2  Although I ultimately succeeded, I was exhausted working what felt like a second job managing my disability accommodations. I navigated situations such as whether intubating a 300-pound adult was required or if the way I held a needle drive was acceptable within the medical school technical standards. These situations kept me up at night wondering, “Would I be allowed to graduate medical school?” I tried to focus on the joyful looks in young patients’ eyes when they realized their doctor shared their experience of being a pediatric patient or having a disability. My pediatric residency experience was easier than medical school. Although I found most pediatric residencies had limited experience training someone like me, many programs expressed a willingness to try in the interview process. Similarly, residency did not feel like an everyday struggle to be allowed to stay. However, in being one of the only disabled residents, I still struggled at times with feelings of loneliness and self-doubt: “Did I truly belong in my program? In Pediatrics?”

Physicians with disabilities (PWD) are now known in the literature to be more likely to pursue primary care, provide family-centered care, facilitate shared decision making, and contribute to innovation.^2–6  The numbers of students and residents with disabilities (SRWD) have dramatically increased. A total of 8.3% of medical students (SWD) and 7.3% of residents (RWD) disclose a disability.^2–5  The number of PWD is lower at 3.1%.^2–6  It is unclear if the number of PWD is lower because of unemployment or if the increased number of SRWD are still in training.^2–6  There are no published studies on pediatric RWD or pediatricians with disabilities. It is unsettling to acknowledge that we remain invisible in the literature. In the complete lack of studies, pediatrics appears unprepared for the increasing number of SRWD compared with other specialties.^7–9  Before we discuss actions toward greater inclusion in pediatrics, we must reckon with ableism (bias against people with disabilities) in our past and present.^6–10 

A total of 83% of 25 000 health professionals taking the Harvard Disability Implicit Association Test scored moderate to high levels of aversive ableism. Having a family member, friend, or acquaintance with a disability were factors most associated with anti-ableism in the same study.¹¹  Ableism creates real danger for PWD. PWD are 2 to 4 times more likely to experience everything from offensive comments to physical harm and unwanted sexual advances from both coworkers and patients. PWD who also identified as LGBTQ+ or nonwhite had 3 to 5 times higher rates of mistreatment.³  Thus, it is not surprising that nondisabled physician focus group participants describe being annoyed or frustrated at or even terrified of disabled patients. Accommodations were described as “…usually not legitimate…like a pet peacock on an airplane.” One described the Americans with Disabilities Act as “hurtful…” because it makes doctors afraid of disabled people.¹² 

From eugenics to forced sterilization, institutionalization to exploitation, the history of medicine sheds light on present biases to disabled people. In the hospital at which I trained, women (often Black and disabled) were being forcibly sterilized less than a decade before I was born.¹³  I remember sitting in the same building 30 years later and looking away every time a naked picture of a child with a genetic syndrome flashed on the screen, the infamous interview question echoing in my brain. The authors of the American Association of Medical Colleges (AAMC) lived experience study similarly described that when disability is taught, it is often portrayed as a negative and with minimal input from disabled people.^14–17 

Moreover, many health professionals struggle to even say the word “disability,”^6,10,13,14  instead, preferring the term “special needs,” which is rarely the preference of people with disabilities.^10,15–17  The word disability is the preferred term within the disability community. Disability is the word that gives individuals civil rights under federal law and connects them to our community’s history.^10,14–16  Special needs is nonspecific and often highlights the comfort and fragility of nondisabled people struggling to say the word.^10,14–17  In addition, it is common in the pediatric literature to equate disability (often masked as “poor neurodevelopmental outcome”) with death.¹⁷  When our lives are portrayed as a death sentence, it becomes more apparent why there are so few disabled voices in the literature.¹⁷  As a pediatrician, I often ponder what children with disabilities would think of how we discuss their outcomes and if they see themselves represented in a different future.¹⁴ 

Increasing representation in medical education is a critical step toward an inclusive future. SWD with physical and cognitive disabilities have been shown to perform like their peers when they receive reasonable accommodations.^4,14  Less is known about RWD’s outcomes.^{5–9,14,18,19}  RWD with unmet accommodation needs are more likely to self-report depression and medical errors.^14,18,19  Yet, anywhere from 20% to 30% of SRWD do not apply for needed accommodations, especially those with learning disabilities, because of a fear of disclosure and stigma, cumbersome applications, or a lack of clarity around technical standards (TS).^{4,14,18,20,21}  Not receiving accommodations is particularly common for those with “invisible” disabilities (eg, learning disabilities, chronic illness, etc).

Like LGBTQ+ trainees, nondisclosure is associated with increased hypervigilance and stress for SRWD.^14,22  Among SRWD who do disclose, studies reveal the cognitive burden they experience in feeling they must be twice as good clinically to succed.^6,14,15,18  Applying for accommodations is a huge barrier. A study of residency handbooks revealed that only 39% outlined accommodations processes.²⁰  The United States Medical Licensing and board examinations have defined processes for applying for accommodations, but denial of accommodations is common. One study revealed that for the 276 SWD who applied for Step 1 accommodations, 51% were denied.²⁰  One key barrier, especially for learning disabilities, is having the necessary documentation to “prove one’s disability” to receive accommodations.^{4,5,14,15,18–21}  Students with learning disabilities may not get diagnosed until late in their academic careers, which increases their chance of being denied accommodations. Studies across higher education reveal that delayed diagnosis is more common for Black and Hispanic students.^{4,14,15,18–21,23} 

The authors of the AAMC lived experience study described the SRWD cognitive burden associated with TS.¹⁴  One participant describes anxiously debating if he could sign TS without lying: “’Does ‘communicate in writing’ mean only ‘ink on paper’ or does typing count?”¹⁴  TS are laid out by the AAMC and Accrediting Council of Graduate Medical Education. However, there is great variability in enforcement due to a lack of disability knowledge and resources in medical education.^{4,5,14,18,20,21}  Under Title III of the Americans with Disabilities Act, accommodations in higher education and employment must be “reasonable and necessary” and not significantly alter course objectives. How and who makes those decisions for SRWD is challenging. For the majority of residency programs, accommodations often fall on program directors who have limited disability experience.^{5,6,14,18,20,21}  Medical schools often rely on undergraduate disability service professionals who lack knowledge of clinical education enviroments.^{4–6,14,18–21,23} 

Over the next few years, pediatrics will welcome more SRWD than ever before.^2,4–10,19  Yet the status of pediatricians and pediatric RWD (both disclosed and undisclosed) is entirely unknown in the pediatric literature. Extrapolating from other specialties, pediatricians with disabilities face significant barriers.^6–9,14,19  Yet, we also bring important assets. We serve as representation for children with disabilities. We are a vital resource for support and facilitating belonging that many SRWD and families and children with disabilities desperately need.^12,14–17  Our lived experiences and relationships with our colleagues and patients have the potential to lower the rates of ableism and even impact other forms of bias.^{6,11,14,18,19,21,22} 

All pediatricians have an opportunity to join us by taking actions at the national, institutional, and individual level (summarized in Table 1). Starting with each pediatrician individually and collectively reflecting on what needs to change. Then, committing to work alongside pediatricians, trainees, and children with disabilities to create an anti-ableist, more inclusive future for all.

Dr Jessica Fernandez reviewed this work and gave not only edits but an invaluable current trainee perspective. There are many past and present students, pediatric residents, and pediatrician colleagues with disabilities whose e-mails and phone calls contributed to my conception of this piece, most of whom do not feel safe in disclosing their disability because they fear that ableism will harm their careers. They deserved and absolutely deserve better. This piece is dedicated to them. Dr Lisa Meeks from Docs with Disabilities graciously looked over this work as well. Finally, Dr Jennifer Fuchs’ persistent invitation to give Grand Rounds on the topic of inclusion for pediatric trainees with disabilities ultimately led to formally pursuing this piece.