Staying Below the Radar: A Call to End Discrimination Free

In my lifetime, there have been efforts to build a culture of inclusion and acceptance—a concerted attempt to end discrimination. This, of course, implies the goal of achieving racial and ethnic equality, but we cannot forget endeavors dealing with bias toward disabilities. In some ways, we have made progress, but watching the news makes me wonder if that is even true.

Before I was diagnosed with a chronic disease in the early 1980s, I was part of the privileged majority. I was male and Caucasian; what did I have to worry about? After I was diagnosed, my social status shielded me from much of the ignorance and the misperceptions people held against me. Still, as I look back, I can pick out specific events that were discriminatory. It was just too hard for me to process, and I suppose I was too young and naive. However, I believe even the most minimal of prejudiced behavior should be exposed and discussed.

In the 1990s, as I moved out of the safety of my parents’ home, society had yet to accept the challenge of building a culture blind to individual differences. The Civil Rights Movement had already made significant inroads into understanding and recognizing racial bigotry; however, our country still festered in blind normalization of discrimination, be it less celebrated and perverse than a few decades before. We were oblivious to the need for accepting and understanding people functioning with ill-defined life barriers—in my case, diabetes.

For me, the ’90s were filled with the wonderment of college, then medical school, followed by the mind-numbing stress of residency. The long hours, minimal supervision (residency training was a work in progress at the time), and really bad food choices took their toll on everyone, but for someone with diabetes, it was oftentimes a cruel environment. Competition was intense, and forgiveness was a value few of us cared to practice. We punished ourselves for not meeting goals and mercilessly ridiculed those who did not live up to contrived standards. Any perceived weakness was met with skepticism.

“Why continue?” you may ask. For me, it was the challenge of getting through the crucible of training, the honor of being a healer, and—let’s be honest—the prestige of being a physician.

In general, I kept myself firmly in the middle (maybe the upper middle) of my academic class. (I’m intentionally being vague because I honestly don’t remember my rank.) I performed well, but just not well enough to be noticed by professors. I don’t blame my diabetes for my mediocrity. I deliberately focused on my health and not as much on my studies, for my family. I was truly afraid of complications, but I also wanted to avoid drawing undue attention to my condition, which was a specific weakness that people could target.

Okay, so maybe this minor medical diversion (sarcasm intended) did affect my academic achievement. Perhaps the need to calculate doses, give injections, count carbohydrates, and suffer through the variability of self-regulated glucose metabolism all while remaining below the institutional radar could have taken a toll on my education and ranking, right? There were certainly no policies, pathways, or plans to help me if I ever needed it. I was alone.

I think back on this time with some disappointment, not just in myself, but also in the institution in which I trained. I should preface this with the fact that I felt like an outcast in this program. I never understood why. Perhaps this was a natural feeling all interns experience as they enter an environment in which they must accept judgment by learned teachers, peers, and patients and where children could suffer as a result of any mistake. I certainly don’t believe having diabetes was the only reason for my social strife. However, my wife and I deliberately hosted welcoming events at our home for incoming residents and tried to make them feel at home, all the while trying to make myself feel more a part of the group. I participated in department activities not only without complaint, but also with a smile on my face. How many carbs are in that cookie or that pizza slice? I never asked, and no one ever thought to say. I was staying below their radar.

I doubt the faculty intentionally targeted me or my diabetes. I laugh at the very thought of those elder physicians sitting around a mahogany table in a dark, smoke-filled room conniving to make my life harder because I didn’t belong. I really don’t think they did; that was not their collective style. However, I doubt my diabetes ever crossed their minds, and I see that as a bad thing. It should have been—and still should be—part of the calculus for anyone who is responsible for trainees or employees or students with disabilities.

That being said, I can think of at least two examples that would qualify as ignorance regarding the health of people with diabetes, if not outright discrimination. At the time, I was on multiple daily injections (of NPH and lispro insulin) and checking my blood glucose took 2–3 minutes from start to finish, as continuous glucose monitoring systems were still being developed. I was not comfortable performing these rituals in front of my classmates, much less within view of the supervising faculty. Remember the insane sense of competition and the need to cover up any possible weakness that could slap a label across my forehead?

It is important to know that residents were required to participate in clinic on most days and to take frequent, endless nights of call. We were always busy. We ate when we could, rarely slept, and tried desperately to not call our supervising faculty for help. The more you called, the weaker you were; this was our mantra.

My first story begins on a particularly busy call night. I can’t remember if it was RSV or flu season, but we never stopped working. As many can relate, I was in the habit of sleeping in my lab coat and tennis shoes, pockets heavy with things I really didn’t need. Per routine, I, the admitting resident, would present every new case the next morning to the accepting faculty, who this time just happened to be the chairman of Pediatrics.

I was overwhelmed, and as happens from time to time in our pancreatically challenged lives, I could not, or did not, take the 3–5 minutes I needed to check my blood glucose, take my insulin injection, and eat. I had to impress the chairman. Time slipped away. I plodded on—exhausted and progressively more nauseous—through rounds. I remember my legs feeling heavy, like dead wood floating in oil. My mouth was dry, and my stomach churned as if I had just drunk a gallon of sea water. By the end of rounds, I could barely stand. When I explained what was going on, I was not met with grace and understanding, but rather a simple statement to go take care of myself.

No, I didn’t go into DKA, but I was close. To this day, I am disappointed in myself, as I should have been my own advocate, but I am also disappointed in the fully trained physician who was supervising me. This person failed to notice, or ignored, the deteriorating resident in front of him. I looked horrible and felt worse. My classmates said nothing. Weakness was frowned upon, and I was alone.

The next example was more egregious. It was an incident that was probably viewed by most as light-hearted humor or an attempt to connect with a younger generation but was, in retrospect, very inappropriate. Most people have encountered a teacher who has a confident, unsavory vernacular that is meant to be funny on the surface but is geared to subtly insult a specific individual. For me, this teacher was, of all people, the chief of Endocrinology. He had a familiar way with people that endeared him to most of his students. Today, I would call him arrogant, but at the time, I accepted his style because I didn’t know any better. None of us did.

He realized that I wanted to become an endocrinologist, and, in his mind, that commonality allowed him to speak to me in any way he wished. Perhaps he thought I should know more than the other residents. In any event, he was notorious for asking me, in front of others, “What is your blood glucose?” He said it in a way that made others laugh. He meant it to be funny, but the joke was always at my expense. This was especially true when I asked a question during class or rounds. In effect, he was calling me ignorant, but also automatically forgiving my ignorance because my blood glucose might be low, or high—who knows?

How is that acceptable? He was labeling me as a dullard in front of my peers, but also normalizing it because, “Let’s face it—having diabetes is hard, and we should give the poor guy a break.” Looking back, it wasn’t just inappropriate, it was defamatory. Who knows how that teasing damaged my reputation or my career? How did my peers perceive me? How did the other faculty members who were supposed to trust me with their patients view this characterization? How could any of them respect me? I felt like an outcast and wondered why. In remembering these events, could there be a glimmer of an explanation?

I share these stories to illustrate how we addressed people with disabilities in the workplace, and how we addressed discrimination—or rather, how we failed to address disabilities and discrimination. We failed this core group of people completely. I am the first to admit that I never stood up for myself. I never recognized the need to stand up for another; however, if I had recognized such discrimination, would I have been brave enough to do so? Furthermore, if I have stories like these, I am sure there are others with stories much more grievous. I am sure there are many who relate to my fears and pain. I am hopeful my experience shines light on the little progress we have made, but also stimulates a new conversation in our collective institutions to more fully address these issues. During my residency, telling the chief of Endocrinology, “What you said was inappropriate” would not have been tolerated. I can only hope it would be today.

Before writing this commentary, I never thought of diabetes as a disability; it was just a part of my life. However, as I think about the barriers I experienced, I realize that I have to accept diabetes for what it is: a struggle, a challenge, and, yes, a disability. I challenge anyone, however, to call it a weakness or something to be ashamed of and to hide below the radar. Chronic diseases and disabilities, congenital or acquired, are not for the weak. Those who live with them deserve our respect and acceptance. Those who live outside the accepted norms, those who present or perceive themselves differently, and those who struggle to define their nature deserve the same. It is obvious today, more than ever before, that we are failing these groups miserably.

Therefore, I believe the conversations devoted to societal perceptions should focus even more on addressing discrimination. Open discussions regarding discrimination within our society, our workplaces, and our specialties should be encouraged, if not mandated. We should highlight gaps in opportunities, insensitive verbal jargon, and the all-to-common erroneous perceptions that we uncover in these forums. We should define and identify true discrimination and deal with offenders. We, as leaders in our communities, should not be silent when any person is targeted. Now, more than ever, we must accept and celebrate the differences in all individuals or risk silencing key components of our culture or—even worse—go against a basic moral imperative that makes us human and helps to define us as good people.

If we do not accept this need for more dialogue and action, if we allow others to ignore our difficulties, perpetuate perceived limitations, and call out our disabilities or differences as pitiful, then we will never grow as a community. Our culture will be guilty of making the same errors repeatedly, allowing the ingrained ignorance of discrimination to permeate our mission as medical providers. It is time that we, as healers, embrace our role in addressing these issues. Standing on the sidelines of society and allowing our colleagues, families, and even patients to be the victims of discrimination should no longer be acceptable no matter from whom or what that discrimination emanates. We should all be proud of what we do and of how we have stood together during the pandemic. Discrimination should not blur those accomplishments.