Their stories are all different. There was the boy with cerebral palsy who just wanted to play little league. The teenage girl who’d had a stroke who wondered if she’d ever get used to her new crooked smile. The kids with migraines. Those with anxiety or medical trauma who were terrified of talking to me at first. Some of them with neurological conditions from illness or injury. Most of them with conditions they were born with, encoded in their DNA. Each child had come to me for care. At some point during our first or fifteenth appointment, I turned to them and told them a secret: their doctor had a disability just like they did. Each child was different, but the looks they gave me in those moments — their smiles, their admiration, their relief — were always the same.
I’m a physician, a pediatric neurologist at a busy academic institution. I care for children, adolescents, and young adults with epilepsy, headache disorders, cerebral palsy, autism, and a variety of other chronic neurological conditions and developmental disabilities. I’m also a young adult cancer survivor and a stroke survivor. Disabled. It took a while before I felt comfortable using the term to describe myself. I had to work through a lot of internalized ableism, including the many negative perceptions of disability I’d learned throughout my medical training. Luckily, I ended up in disability-centered spaces, working alongside other young disabled people who supported me as I educated myself on disability and identity, disability history, and the disability rights movement. And in those first few months after my illness, I also met other young disabled physicians: fellow cancer or stroke survivors who told me about navigating residency training and illness; other migraineurs who’d also hid their symptoms; those with medical trauma, navigating working within a system that hurt them. Like it had hurt me. Just as quickly as I connected with other disabled physicians, I also figured out how rare it was to see a doctor openly speaking about their disabilities. Especially when it came to how these disabilities affected their relationships with patients.
The Impact of Ableism
Despite the ubiquity of disabled and chronically ill patients, most physicians don’t get much training on disability outside of pathology. Too often we physicians see all disabilities as problems to be fixed, issues incompatible with a good quality of life. The idea that someone can have a “normal” life and be happy, healthy, and disabled is a foreign idea. This thinking translates to the care we provide.
Ableism has real, negative effects on health. We know that disabled and chronically ill people have unmet healthcare needs, limited access to care, higher healthcare costs, and countless negative health outcomes. As institutional ableism and discrimination contribute to these problems on a broader scale, interpersonal ableism weakens doctor-patient relationships, ultimately affecting patient trust in the healthcare system. Disabled people have horror stories about their treatment from healthcare professionals. From inappropriate questioning about a disabled person’s ability to make decisions about their care to debates about quality of life (and which lives are worth saving) during the COVID-19 pandemic, ableism and bias are deeply entrenched in our healthcare system. This further prevents this population from receiving the comprehensive, high-quality care they deserve.
Medical ableism doesn’t just affect patients: it affects doctors too. While about one in four U.S. adults have some form of disability or chronic illness, the exact number of physicians with disabilities is unknown. Some studies have reported that 2% to 10% of practicing physicians and about 3% of medical students have a disability. But might these numbers only reflect those disabled physicians comfortable disclosing their conditions to researchers and employers? Disclosure is highly personal and often comes with risks. Ableism in medicine, cultural expectations that doctors are practically superhuman, and the penalties that come with disclosure lead many physicians to stay silent. Few openly disabled working physicians means there are few available to mentor the next generation of disabled trainees, to support them as they simultaneously navigate medical education and chronic conditions, and to show that a career in medicine is possible for disabled people. And that anti-ableist medical practice is possible.
To Disclose or Not to Disclose?
Disabled physicians are good for disabled patients and the healthcare system as a whole. We know that when doctors and patients share common experiences, their partnership can be strengthened, trust can be engendered, and health outcomes can improve. Disabled physicians have expertise from their lived experience in addition to their clinical expertise. We know how hard it is to fight for accommodations and how it feels when doctors dismiss our concerns. We know what ableism feels like from the medical community on both the personal and professional levels. We can connect with patients in ways that our colleagues without disabilities can’t. It makes sense then that so many of us want to tell our patients just how much we relate to them.
It’s important to note that there’s some controversy about whether physicians should disclose their disabilities to patients. Some argue disclosure puts the spotlight on the doctor when it should be on the patient. Others suggest it’s unprofessional; an argument that harkens back to old beliefs that physicians should never be emotionally vulnerable with patients. This kind of thinking separates physicians from patients entirely, dismissing the fact that some of us are both physician and patient. I often wonder how much of these arguments against disclosure are means to uphold medicine’s ableist status quo. What if more physicians disclosed their disabilities to patients and colleagues? Could our healthcare system change for the better?
I don’t always tell my patients about my conditions. Thanks to years of physical and occupational therapy, my physical disabilities are largely invisible. I have the power to choose when and where to disclose; a privilege not afforded to all. I don’t take disclosure lightly. Each time I’ve told a patient about my cancer, my stroke, my migraines, or my own history of medical trauma, I’ve done so to let them know that I get it. I’ve been the one in the hospital bed, worrying about my prognosis, exhausted because I’d been woken up for four or five exams before rounds, hurting because of inadequate pain control. I know what it feels like to be the patient who gets bad news, how scared and angry it makes you feel, but also how a “bad” diagnosis can be validating. I know how it feels when your doctor doesn’t believe you. Each time I’ve shared part of my story, I’ve seen patients or their caregivers relax, just a bit. We’ve had richer conversations because they knew they could trust me. I truly believe that, as a result, I’ve been able to provide better care.
My disclosure affects my colleagues and trainees too. By being open about my disability, I show students and residents that disability is more than just pathology, and that we can and should challenge our ableist system. That we can focus less on “fixing” disabled people and instead provide individualized, compassionate care. Like so many of my disabled colleagues, I’m able to help abled colleagues reconsider how they perceive prospective disabled trainees, to encourage our program to bring accessibility to the forefront, and to change ideas about what leadership can look like. Disabled physicians can change healthcare for the better.
I don’t know when I’ll let another patient know about my disabilities. I do know why I’ll tell them: I want them to know I understand what they’re going through. I can guess they’ll respond with the same sense of community and relief that all of my other patients have felt. My other guess is they’ll look at me a little differently. And know that we are truly in this together.
Diana Cejas, MD, MPH, is a pediatric neurologist, an assistant professor in the Department of Neurology, and faculty at the Carolina Institute for Developmental Disabilities at the University of North Carolina at Chapel Hill.