One day about nine years ago, I was at after-school daycare — basically the gym where many students stayed if their parents were unable to pick them up right away. We would usually have recess outside and study hall time inside as we waited for our parents to walk through the doors. However, we did something new that day: A “get to know each other” activity where everyone had to write a couple of facts about themselves on a notecard. I remember that I wrote a couple of true, but surprising, facts about myself. I thought that this notecard would remain between me and two or three other students, but unbeknownst to me, that particular day made a huge impact on my life and how I perceived myself forever.
After filling out the notecard, I sat in a tiny blue chair in the middle of the gym, chatting with my friends around me. We were waiting to go outside for recess, play on the playground and do what kids usually do. To my surprise, the daycare organizer walked to the front of the room with the notecards in hand. She started reading the cards one by one and asked kids around the room to guess who wrote each card. Sweat ran down my forehead as she grew closer and closer to mine.
Then, she read my card: “I have four fingers and three toes.”
Even now, thinking back to that time, I felt so embarrassed and shocked that I can’t even remember the emotions running through my body. Audible gasps filled the gym, and I felt my face getting really hot. My friends glanced at me with worry before one of them volunteered my name to move the activity on.
I had always been proud of myself for achieving so much — playing instruments, taking art classes, swimming, attending soccer practice, defending my place as the fastest typer in my grade — while essentially living the life of a normal kid. When we were finally let out for recess, a group of girls younger than me approached me and went so far as to call me “alien.” At that moment, none of my achievements mattered. The feeling of shame enveloped my body. Luckily, my friends immediately came to my defense.
When I entered middle school, I held this memory very close when I interacted with others. I thought a lot about which hand to raise in class, always covering my left hand with my sleeve. As a result, I became more withdrawn and introverted, contradicting the nickname of the “social butterfly” that I had earned in elementary school. I was too scared to let people see my hand, lest someone call me an alien again. It’s actually terrifying and appalling how much someone’s name calling affected my self-esteem. It’s easy to make an ignorant comment about somebody, but it’s difficult to be the one micromanaging every little action in your life as a result.
Throughout my lifetime, I’ve only voluntarily brought up my disability while speaking to others. Most of the time, I answer questions as I receive them: “How did it happen?” and “Does it hurt?” My responses being, “Yes, it’s possible to be simply born with limb disabilities” and “No, it does not hurt.” Every day, I desperately hoped that nobody’s gaze would last too long on my hand. It wasn’t until the latter half of high school that I started to feel more comfortable — and even proud — in my own body.
In May of my junior year, I received an email from the Cleveland Clinic, the hospital I frequented for my hand and feet check-ups. I could barely contain my excitement when I read that they wanted to interview me and record me playing the piano. For the past several years, my parents consistently sent videos of my recitals to the doctors to show the progress I was making with my left hand. Since the hospital’s newsroom happened to come across my story, they wanted to do a full coverage and share it, along with other inspirational stories about people who pursued their dreams, despite being born with disabilities.
In early spring, a camera crew, along with an interviewer, pulled into my driveway and set up their equipment all around my house. In the first segment, the interviewers asked me what it was like to perform and asked my parents about their reaction when they found out I would be different from other kids. It was the first time that I heard my mom talk about how she felt after learning about my condition through the ultrasound. My heart felt like it had been stabbed. She had fallen into depression because she was worried that I wouldn’t be able to live a normal life. Once I was born, the doctors found that my left hand had a huge gap that separated my pinky and ring finger from my pointer and thumb. My parents had gone to several doctors for a consultation about what to do and were horrified by one doctor’s suggestion of cutting off the two offending digits that stuck out from my hand. Just when there seemed to be no hope, they found my current hand doctor at Cleveland Clinic, who was able to sew up the gap in my left hand and continues to check up on my bone development for years. My doctor was also the one who encouraged my parents to sign me up for piano lessons, which was how I started to love myself and my body.
At first, piano seemed like an obligatory chore — practice, learn a new piece, perform at recitals. A boring and repetitive cycle. Whenever I learned a new song, my teacher and I would have to spend the first 15 minutes of the lesson altering notes so my left hand could play them. I first started getting more invested when I spent hours learning how to play movie soundtracks over the summer. When I auditioned for my middle school’s jazz band, I was hit with the reality that I could probably never reach my full potential performing the piano because I didn’t have enough fingers. Seeing my competitors effortlessly crush one of Chopin’s difficult etudes, I took a longing glance at my own hands. I could never reach the success meant for me because I was just born behind in the game.
My piano teacher always said playing the piano was about being able to express the composer’s intentions to the audience. If you played every note perfectly but lacked the nuances in the dynamics and rhythm, the audience will feel that something’s missing. She told me that every performer makes mistakes, and the greatest performers are the ones who hide them behind the musicality. With this new mindset, piano became less about “perfecting” the sheet music and more about expressing a message.
At the Cleveland Clinic Gala for Pediatric Research, I had the opportunity to perform for an audience of doctors and families. I chose the third movement of Beethoven’s Moonlight Sonata because of its thunderous confidence, which I aspire to have. Three years earlier, I thought it would be impossible for me to learn the piece. The piece began with ascending and descending arpeggios, repetitive left hand notes — just as tumultuous as the anxiety and uneasiness I had about my future with disabilities. But at the finale, my left hand and right hand worked together to end the piece with a resolute chord. I took this performance as a way to show that I had overcome the uncertainty of my piano career and, even more importantly, the uncertainty about myself. Despite the hardships and doubt I had at the beginning of my life, I learned to live and cherish being born different. And, I couldn’t have done it without the support I’ve received from my current friends, piano teacher, doctors and parents. I’m also very fortunate that I was able to find something that I love and boost my self-esteem and perception of myself. However, for many people born like me, their experience is not the same.
Disability isn’t something rare. Over one billion people in the world experience some sort of disability, and this number is only increasing. Further, one in 10 Asian Americans have a disability. Despite their prevalence, disabilities continue to be stigmatized in society. According to the World Health Organization, someone with a disability is “three times more likely to be denied healthcare, four times more likely to be treated badly by the healthcare system, (and) 50% more likely to suffer a catastrophic health expenditure.” Racism also plays a role in this issue. Jennifer Lee, the founder of the Asian Americans with Disabilities Initiative, was told that she couldn’t possibly have Crohn’s Disease because she’s “Korean American.” Among Asian Americans, the model minority myth also prevents a lot of people from seeking help. This notion of a “model minority” creates unrealistic expectations for Asian Americans to succeed under duress. Thus, they are likely to internalize their struggles and are overlooked with regards to assistance and resources.
The biggest issue that needs to be addressed is the stigma surrounding disabilities, especially in childhood. That’s the delicate period of time where someone builds their confidence and learns more about themselves. That period of time was when I lost a bit of my self love because I was told that I was weird and disgusting for being born the way I was.
It’s time that we incorporate more education about disabilities in our school systems. We need to teach children that being different is okay. And for children who have disabilities, we should celebrate their differences and encourage them to pursue their passions.
Currently, it is our social responsibility to make the world more accessible. Organizations like the American with Disabilities Act National Network, American Association of People with Disabilities and National Organization on Disability are working to raise more awareness about disabilities and empower those with disabilities.
You, the reader, can do your part by making sure you treat everyone equally and be mindful about what you say around someone with disabilities. Stop the insensitive jokes when they happen. Show your support and love to those who are navigating the world differently from you.
MiC Columnist Daisey Yu can be contacted at yudaisey@umich.edu