Med Student Chooses To Live Out Loud About Having a Disability

Jolene Won encourages others to speak up and change the narrative

Health Equity October 5, 2021
Asian woman with dark curly hair wearing a rust-colored collared shirt

Having a disability can be a lonely experience, even outside of medical school. So unfortunately, it is not a new experience for me to be the only person in the room who openly has a disability. As much as I would love to be a part of a community of other students with disabilities, I also understand the reluctance other students have to speak out. Some may fear the stigma still associated with having a disability. We live in a society that only acknowledges people with disabilities as part of “inspiration porn” news stories, as ammunition against opposing political parties or as entitled parasites on society. I think the blame falls on the people and institutions that push these narratives and sweep all who do not fall neatly into one category under the rug.

I was diagnosed with attention deficit hyperactivity disorder, or ADHD, when I was 15, and since then, I have had three different learning disorder evaluations from three different providers. My first learning disorder evaluation was relatively easy to get once I started to advocate for myself, telling my pediatrician that I knew something was wrong and begging her for a referral for a learning disorder evaluation.

However, once I turned 18, resources became much farther and fewer between, not to mention expensive. I only found the two institutions that performed my adult evaluations through sheer dumb luck. One I was referred to by a woman I volunteered with one time in 2014, and the other I found after posting on Reddit. If I, a health-literate college graduate from an affluent family living in a major urban area, had to take to social media for my evaluation, how many people are out there who don’t have the same resources and will simply never get diagnosed?

My experiences with navigating higher education, even with a diagnosis, have been similarly troublesome. I have been through the disability services process at three stages of education at four institutions. I attended undergrad at a large state school where the accommodations office was overworked and understaffed, and professors were not always readily amenable to Americans with Disabilities Act guidelines, so I spent a lot of time in administrators' offices with 90 pages of documentation that detailed my disability in my hand and with a chip on my shoulder. 

I have been very fortunate that the disability process has been far easier at Rush than it has been at any other point in my life. However, the National Board of Medical Examiners, the accreditation entity that issues my medical board examinations, is reluctant to grant accommodations for individuals who are diagnosed later in life with ADHD. The realization that bigotry has infiltrated even the highest echelons of the medical profession has been a hard pill to swallow. 

The decision to enter a health science field

Choosing to enter this field was not always well-received by some family members. A few of my relatives frequently reminded me how difficult this path would be or even used my disability to manipulate me by saying things like, “You need to be more responsible or you’ll never make it through med school,” if I was late. I think the only reason I was not entirely dissuaded was because I did not have a Plan B. The only future I ever really wanted was one in medicine.

That said, I always knew there was no legal barrier to people with disabilities becoming physicians, but I never met any disabled med students or physicians, or saw representations of them in the media. So I subconsciously assumed that no matter how smart they were, people with disabilities simply weren't able to compensate for their disability enough to be considered competitive candidates for medicine. 

My turning point was when I learned my former physician and mentor has obsessive-compulsive disorder, or OCD. "It doesn't have to affect your work," she said. "You just have to learn how to manage it." This person saved my life when I was a child and is a major role model of the kind of physician I aspire to be, so hearing that changed everything for me. I realized I could become a doctor — a good one — and one who opened doors for others as had been done for me. 

I went into the med school application process knowing that I had to be honest about who I am on my application, because my disability has been such a big factor in shaping my life and perspective — even if that would be a strike against me with the admissions committee. However, since medical schools do not have to justify their decisions, I will never know how my disability might have worked against me in the admissions process.

Students with disabilities and mythbusting 101

Myth: Students with disabilities cannot fulfill the rigorous requirements of a health science program.
Fact: People with disabilities are not fundamentally less capable than non-disabled people. The admissions committee does not have a lighter set of requirements for us; there is no disability-adjusted grading curve. We are held to the same standards as everyone else throughout our education, and if we did not meet those standards, we would not have been accepted, nor remained here. 

Myth: Providing accommodations to students with disabilities compromises patient safety.
Fact: We do not want to compromise patient safety either. Fortunately, the Americans with Disabilities Act only protects "reasonable" accommodations — that is, those that don't impose "undue hardship" to the providing entity's finances, operations or workforce. We are not asking to bring our service dogs into an immunocompromised patient's room, or for extended time on an open-heart surgery. We are asking for dictation software and schedules that permit us to make our medical appointments — resources our attendings have already received without any harm to their patients.

Myth: Accommodations in the clinical setting do not prepare students for the “real world.”
Fact: Frankly, an awful lot of medical school does not prepare students for the "real world." We can refer our standardized patients to every kind of specialist or support staff imaginable without worrying about insurance coverage. We learn to describe vanishingly rare diseases using buzzwords of questionable accuracy because that is how they appear on board exams. We're not expecting to continue on to a career at a hospital with infinite resources and pheochromocytoma patients; our goal is to learn without artificially imposed limitations interfering with our ability to do right by our patients. If the “real world” does not want health care workers to be able to meet their potential to provide outstanding care, maybe the “real world” needs to change.

Securing support as a student with disabilities in a health science program

For students with disabilities who are enrolled in medical school, here are a few recommendations on how to navigate the terrain:

  • Be proactive. Check in with instructors or supervisors about your accommodations. Get your documentation in as early as possible to the Office of Accessibility Services to ensure faculty/clinical staff receive your accommodations and have time to ask questions and/or seek clarity. 
  • Consider the future now. Even though we are still technically students, think about having accommodations as a bridge to navigating the professional world with a disability. Will you need to disclose your disability to HR? Your future supervisor? Practice having those discussions as a student.
  • Be transparent. For those with invisible disabilities (and this may be a less popular opinion, hear me out): Be open about your disability with your colleagues, classmates and patients. Briefly disclosing a shared history can be a powerful way to build trust with a patient. Patients with disabilities have often had bad experiences with health care, so disclosing a shared history can be a powerful way to build trust and demonstrate good faith from the health care team. On the flip side, many of your peers' knowledge of people with disabilities may be limited to what little they have gleaned from media stereotypes. Talking with them about your experiences can help dispel misinformation and humanize patients with disabilities in the greater medical community.

Consider how a disability empowers you

My ADHD is an enormous asset in helping me think on my feet. I am an expert in piecing things together with minimal context, having spent my first 16 years scrambling to fill in the gaps left by my lapses in attention just to know what was going on around me. I often find connections between ideas that others might not even think of, much less link. And I thrive when facing problems that can't be solved by traditional means where I can think outside of the box.

Most importantly, I think my experiences have made me more empathetic, and not just to patients with disabilities. I know from personal experience that you cannot know what someone is struggling with, no matter how they look on the outside, so it is important to give people the benefit of the doubt and be good to one another.

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