August 24, 2009
The Short Bus: Thoughts on Disability, Mortality, and Accommodations
As I remember it, the short bus I rode to the second and third grade had nine passengers: eight boys, one girl, four of us had dyslexia, three ADHD, two cerebral palsy. Once or twice a year, a behavioral disorder or conduct disorder would ride with us. After only a few vividly memorable days, such boys were always transferred to another school, one that we did not comprehend but feared as being horribly strict. The appearance and disappearance of conduct disorders reminded us all that though we had already fallen out of regular education, we could fall farther still. Our short bus, though a mark of alienation in the schoolyard, was a privilege. Over the next few years many of us were “mainstreamed” back into our old schools and classrooms. Most of us tried to hide where we had been.
A year ago at a local bar, I ran into an old special ed classmate. He had been the tallest, most athletic among us. We had been mainstreamed into nearby schools, so I had watched in high school as he had effortlessly blended in with the most popular and attractive set of pubescents. It was therefore a shock to see him older, morbidly obese, his skin creased by the sun, his voice gruff from a two-pack-a-day habit. A few beers and barstool confessions later, it was clear he was also struggling with alcohol and holding a regular job as a security guard. He had been in touch with a few of our classmates. What followed was undoubtedly an example of “the bias of unusual news;” likely those with stable careers and families were not remembered. Also, perhaps a random sampling of a non-special ed class would yield similarly glum news. But what he reported struck me like a kick in the stomach. Of the ten of us who rode that bus, one of us was in rehab, one became a devotee of a fundamentalist religion (the exact flavor of which escapes me now), and one had crashed while driving drunk on the freeway, killed his two passengers, and was now serving 15 years in prison.
Then there was the two of us: my old classmate, frankly, uncomfortably honest about his troubles and me, a medical student. “You can’t fool me, Charlton,” he said while with a smile. “I know doctors are as screwed up as the rest of us; I watch House.” He wasn’t wrong about me, and I told him so. We traded a few more stories, promised to keep in touch, and then left. Later that night, I thought about the short bus, its cold vinyl seats. But it wasn’t until half a year later, when I was denied accommodations for the USMLE, that I began to tell my friends about it. Many were surprised by the intensity of my memories. “The problem with riding on that bus,” I would say, “is that some of us never got off of it.”
I was a poor student until sometime in high school when spelling became immaterial to writing and calculation unnecessary for mathematics. Then suddenly, almost magically, I was promoted from remedial classes to advanced ones. I became dependent on academic success to maintain a sense of self and dependent on the special accommodations that made such success possible. That is why when accommodations were denied for the medical licensing exam, my crisis was not purely one of practicality but one of identity. If the academic powers that be did not believe I was disabled, and I had spent most of my childhood and much of my adult life struggling with disability, who exactly was I?
The United States Medical Licensing Exam, step 1 is as much rite of initiation as it is an evaluation. Like most initiation rites, it leaves scars. On some at least. As far as I can tell, medical education affects some students more than others. It’s hard to tell. There’s a lot of posturing among students, and I’ve doubts about those who claim never to have had nightmares about gross anatomy dissections, never to have felt the their souls squirming with sadness or disgust or heartbreak when encountering a dying patent, or never to have lain awake at night battling a feeling of insufficiency. Preparing for the USMLE as the first test I would take without accommodations since I was six years old brought on a bewildering array of symptoms: practice tests interrupted by a racing heart and feeling of suffocation, early morning awakenings covered in sweat, loss of appetite and weight. With predictable (and now laughable) second year paranoia, I alternately diagnosed myself with everything from depression to tuberculosis to PTSD to pheochromocytoma to Hodgkin’s lymphoma.
When the chips are down, I wax philosophical. It’s hard not to after being raised by two psychiatrists. As it became more and more apparent that my performance would be lowered by a lack of accommodation, I found myself thinking almost constantly of death, of my parents and of my own. Since discovering that I could succeed in academics, I had become mortally frightened of what other might perceive as failure. I began thinking about why, at the most fundamental level, we all fear failure. It is, I believe, because at our core there is a small part of us anticipating the inevitable failure of our bodies: the hour come round at last when our ventricles will kick but fail to push enough blood, when the myriad and Byzantine molecular safeguarding our DNA will fail to stop a few cells spilling out into cancer, when our cerebral vessels will strain against the pressure and then burst.
All failure is foreshadow of our last failure.
Many of the disabled and those contending with a debilitating disease are more acutely aware of this most essential fear. We are protected from failure only by the special accommodations and care that society gives to us and may yet take away.
It is difficult for me to think about when society should provide accommodations and when it should not. We now (mostly) live in a civilization that sees the justice and benefit in providing accommodations to the disabled. But like any act of sympathy, the granting of accommodations is subject to abuse. Procuring a diagnosis of learning disability is both difficult and expensive. It has been a diagnosis given mostly to children of the well-to-do who can afford to pay a specialist to examine their child. Learning disabled children without parents who have the ability and knowledge to pursue such evaluation are more likely to be labeled as stupid rather than disabled. I have heard the argument made, convincingly, that this often breaks down along racial lines. And I have encountered more than one upper class family that aggressively pursues a learning disability diagnosis because their child, though displaying no signs of disability in elementary school, is not scoring high enough on the SAT to meet their expectations.
Clearly, I have to do more homework on the subject before I can make more emphatic claims, but I have always had and always will feel a great disdain for those that abuse accommodations. That is why when the National Board of Medical Examiners denied my application for accommodations, claiming that I had been fully remediated, I took it seriously. I took a few practice tests and saw that while I might not be able to score highly on the exam without accommodations, I still could pass.
It was, I believed, a chance to finally confront my disability and the need for academic success. It was a chance to get off of the short bus, or so I thought.
The test has come and gone, and I’m still alive. It felt absolutely, completely brutal. I had to race, just barely finishing each section. Other medical students have told me that they walked out of the exam feeling as if they failed it only to discover that they did just fine. I’m praying I fall into the same category. Now, four days after the event, I’m slowly putting my life back together and trying to figure out what all of the pain meant. Mostly this post is an attempt to do just that. Now I wonder if I should have contested the NBME’s decision to deny my disability status. I wonder if I should have studied harder or longer. But mostly I am embarrassed that I found the Step more traumatic than my peers did but am determined to turn this experience into something that makes me a better writer and, one day, a better physician.