Wearing my disability with pride

Wearing my disability with pride

By Zachary S. Wiersma- Science magazine
Tuesday, 19th July 2016
Filed under: GeneralInformation

“We can all allow our disabilities to be sources of strength.”

Snap, cluck, snap! The noises rang out in the conference hall. Several people turned toward me to see what was causing the disturbance. As I walked down the aisle to join my graduate school labmate, I jerked my head to the left and snapped my fingers in my right ear, continuing to draw attention to myself. But when the presentation began, I forgot about how others might see me. I focused solely on the science, even though I clucked my tongue, tightened my right calf, and thrust out my right arm throughout the presentation. None of it was intentional: I suffer from Tourette syndrome (TS), a neurological condition that compels me to perform involuntary repetitive movements and vocalizations known as tics. And I wasn't embarrassed. In fact, after some years of struggling with the potential negative impact of my TS, I now consider it to be an asset.

When I was a child, my tics did not cause any serious problems. But as I got older and thought about my future career and how professional colleagues would perceive me, I worried my TS might impede my dreams. By the time I began college, I was acutely self-conscious about my disorder and worried that it might distract teachers and fellow students or deter them from interacting with me.

These concerns seemed justified when, as a sophomore, I toured a pharmaceutical plant with other students. The research and commercial potential fascinated me, and I spent all morning entranced by the science. But my musing was interrupted when I entered the conference hall for a presentation and heard students and staff members complaining about me under their breath. I noticed a few stares and some furtive pointing. At first, I didn't understand. And then I realized: They had been watching me snap my fingers in my ear and cluck my tongue all day.

I was flustered. Pharmaceutical research and its broader impacts were my focus that day, and I couldn't understand why anyone would pay attention to me instead. I was embarrassed and convinced I had distracted everyone, maybe even causing them to miss out on opportunities. I asked my undergraduate adviser, who was accompanying us, if I should leave or sit in the back of the room. He calmed my concerns with a grace and wisdom I will never forget. “Let them talk,” he said. “They'll want to learn who you are.”

In that moment, I reshaped my perspective of disabilities in professional settings. I realized that my TS is a powerful tool that can help me connect and communicate with others. I read people better than most because I make a point of looking past their exteriors and any unusual behaviors. At the same time, I am particularly good at observing and analyzing body language.

I am now a fourth-year Ph.D. candidate. I also work part-time at the university technology transfer office, where I meet with professors to discuss their inventions. Back in college, my TS would have embarrassed and distracted me during these meetings, but now I explain my disorder without shame. I exhibit confidence and self-awareness and don't allow room for judgment. In turn, most professors warm to me quickly and lower their guard.

My experiences at the technology transfer office, coupled with my love for research, have inspired a passion for academia and invention, and I hope to become a professor and an academic entrepreneur. Shifting my perspective about my TS helped me see that I can succeed.

I also plan to mentor and advocate for other scientists with disabilities. I recognize that some face accessibility challenges that cannot be overcome with a change in mindset. But regardless of these barriers, I hope we can all allow our disabilities to be sources of strength. We shouldn't hide our true selves because of fears of blemished careers. I look forward to adding my voice and actions to broader efforts to make science more accessible and inclusive for scientists with disabilities. Together we can all wear our disabilities with pride.