Sarika Chawla
Transcribed from a TEDx talk given at Concord-Carlisle High School in Concord, MA on March 3, 2019
When I was eight, I asked my best friend if I could join a club she’d created. She told me, “No way! You’re in a wheelchair. You can’t do anything!”
I remember crying in my parents’ arms soon after and questioning if my friend was right. Yet, I also recall them telling me I could do whatever I put my mind to. As I grew older, I tried to remind myself of my parents’ words and never let my disability define me.
But I would falter along the way.
When I was thirteen, a doctor told me that university researchers wanted to study my congenital tumor, which had damaged my spinal cord and left me with paraplegia. For the first time, I realized that scientists could learn from my condition to help remedy others; I soon made it my passion to do the same so maybe one day, I could develop a cure. Scientific research would revolutionize medical treatment, and I was driven to make my own contribution.
So, as a junior, I emailed nearby professors about possible internships, and eventually, Dr. H. Robert Horvitz, from MIT, offered me one. That summer, I would study genes implicated in ALS and frontotemporal dementia, or FTD, by performing experiments on their counterparts in microscopic nematode worms.
Armed with pipettes and a worm pick, I entered the lab ready to advance disease treatments. But after weeks of gene cloning and DNA purification, I was no closer to accomplishing my goal. Frustrated, I asked my lab members what potential implications my simple work had for curing ALS and FTD. As I tried to make sense of my role in the lab, a postdoc named Kirk said something that struck me. He said: “I don’t like purely disease-driven mindsets. As biologists, our goal is to understand life. It’s great if our work leads to treatments, but if all we focus on is curing a specific disease, we might miss out on other important observations or findings.”
Slowly, I realized that maybe I, too, had fallen into the trap of having a solely disease-driven mindset; in more ways than one, my tumor had paralyzed me and my thinking.
I’ve learned that my initial outlook was just one, narrow lens with which to view research, one of many. Ultimately, research adds to the existing field of scientific knowledge and helps us better comprehend complex phenomena in today’s world. Only with a detailed understanding of the causes of disease can we engineer solutions to scientific problems or enhance current solutions, whether those be medical, environmental, or something else. I’ve come to change my mindset to one that lets me approach research as a tool for exploration and discovery. While I still hope to one day develop a treatment for paraplegia, that isn’t my only focus.
It shouldn’t be yours either.
I shouldn’t be the only one focusing on changing my mindset and breaking out of the narrow, disability-driven view I once held; abled people need to readjust their own focus as well because for too long, society has harbored a harmful view of people with disabilities. Many abled people subject themselves to a different type of disease-driven mindset, reducing those with disabilities to nothing more than their perceived disease. This hurtful mentality often takes two different directions, which I’d like to share with two different stories—one about kids and one about adults.
In eighth grade, after my English teacher gave back a project, my classmate told me that I only got good grades because teachers felt bad that I used a wheelchair. But we had classes together for the next few years and, over time, he saw me ask questions, contribute to discussions, and dedicate myself to my work. Eventually, these observations complicated his oversimplified judgment of who I was, and he came to realize that I did well in school because I worked hard and enjoyed learning.
My classmate initially attributed my success to a wheelchair, and this is one form the disease- driven mindset often takes. The other form is the idea that my wheelchair prevents me from fulfilling the most basic needs.
Recently, I was at a get-together and a neighbor asked my mom, “When Sarika goes to college, are you going to go live with and take care of her?” She assumed that my wheelchair prevented me from ever being independent, which reveals a mindset that those with disabilities can’t do what abled people can. My mom explained that I can, in fact, live independently and take care of myself, and that I’m even learning to drive soon. Our neighbor was surprised that I could live my life like most other people, and it opened her eyes to realizing that my disability doesn’t actually limit me.
This got me thinking: if my eighth grade classmate and my neighbor could change their mindsets, can we get others to change theirs too? A disease-driven mindset is often subconscious, something we don’t realize we have. It’s critical that people are more informed about this and treat those with disabilities with the dignity they deserve. We need to create a positive, more inclusive way of thinking.
Let’s work together to disable the disease-driven mindset.
It’s important to realize that the world is unfair, but moving forward, I ask of you: for whom is it unfair?
We need to reevaluate how we speak to and about those with disabilities. Often, we have perceptions without truly getting to know the person. I’m asking you to have the moral courage to get to know someone who is differently abled and understand them better. There is more complexity to them. They are more than just a disability. We need to think about everything that makes up the identities of those different from us instead of jumping to conclusions based on limited information.
At eight, I promised not to let others’ perceptions of my disability define me; at one point, my own perceptions did just that. But different lenses exist through which I can view myself. Just like developing cures is one part of research, my disability is one part of me. It’s not the only part of me.
And on that note, I imagine there’s more to all of you than meets the eye. So, I want to leave you thinking more about perception and mindset. I’ve changed mine.
Why can’t you?