One day, about nine years ago, I was at the after-school daycare — basically the gymnasium where many students stayed if their parents couldn’t pick them up right away. We usually had recess outside and a study room inside while we waited for our parents to come through the doors. However, we did something new that day: a “get to know each other” activity where everyone had to write down some facts about themselves on a note card. I remember I wrote down some true, but surprising, facts about myself. I thought this card would stay between me and two or three other students, but unbeknownst to me, that particular day had a huge impact on my life and how I felt about myself forever.
After filling out the note card, I sat in a small blue chair in the middle of the gym, chatting with my friends around me. We were expecting to go out for recess, play in the playground and do what kids usually do. To my surprise, the daycare organizer walked to the front of the room with the cards in hand. She started to read the cards one by one and asked the children around the room to guess who wrote each card. Sweat ran down my forehead as she moved 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 racing through my body. Audible gasps filled the gym and I felt my face get very hot. My friends looked at me with concern before one of them offered my name to move the business forward.
I’ve always been proud of myself for accomplishing so much – playing instruments, taking art lessons, swimming, attending football practices, defending my spot as the fastest typist in my class – while living basically the life of a normal child. When we were finally released for recess, a group of girls younger than me approached me and went so far as to call me “alien”. At that time, none of my accomplishments mattered. The feeling of shame enveloped my body. Fortunately, my friends immediately came to my defense.
When I entered middle school, I held this memory very close when interacting 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 As a result, I became more withdrawn and introverted, belying the nickname “social butterfly” I had earned in elementary school.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 has affected my self-esteem. It’s easy to make an ignorant comment about someone, but it’s hard to be the one to micromanage every little action in your life accordingly.
Throughout my life, I have deliberately only mentioned my disability when talking to others. Most of the time, I answer the questions as they arise: “How did this happen? and “Does it hurt?” My answers being, “Yes, it’s possible to just be born with limb disabilities” and “No, it doesn’t hurt.” Every day, I hoped desperately that no one’s gaze would stay on my hand too long. It wasn’t until the second half of high school that I started to feel more comfortable — and even proud — in my own body.
In May of my freshman year, I received an email from the Cleveland Clinic, the hospital I attended for my hand and foot exams. I had a hard time containing my excitement when I read that they wanted to interview me and record me playing the piano. Over the past few years, my parents have constantly sent videos of my recitals to doctors to show the progress I was making with my left hand. Ever since the hospital newsroom found out about my story, they wanted to get full coverage and share it, along with other inspiring stories about people who pursued their dreams, despite being disabled from birth.
In early spring, a film crew, accompanied by an interviewer, came to my driveway and set up their equipment all around my house. In the first segment, the interviewers asked me what it was like to play and asked my parents what their reaction was when they found out that I would be different from other children. It was the first time I heard my mother talk about how she felt after learning about my condition through the ultrasound. I felt like my heart had been stabbed. She had fallen into depression because she feared that I could not lead a normal life. Once I was born, doctors found that my left hand had a huge gap that separated my little and ring finger from my index and thumb. My parents had gone to several doctors for a consultation on what to do and were horrified by a doctor’s suggestion to cut off the two offending fingers sticking out of my hand. Just when there seemed to be no hope, they found my current hand doctor at the Cleveland Clinic, who was able to stitch up the gap in my left hand and continues to monitor my bone development for years. . It was also my doctor who encouraged my parents to enroll me in piano lessons, which is how I started to love myself and my body.
At first, the piano seemed like a compulsory chore – practicing, learning a new piece, performing at recitals. A boring and repetitive cycle. Every time I learned a new song, my teacher and I had to spend the first 15 minutes of the lesson changing the notes so my left hand could play them. I started getting more involved when I spent hours learning how to play movie soundtracks over the summer. When I auditioned for my college jazz band, I was struck by the reality that I could probably never reach my full potential playing the piano because I didn’t have enough fingers. Seeing my competitors effortlessly crush one of Chopin’s difficult etudes, I cast a wistful glance at my own hands. I was never able to achieve the success that was meant for me because I was just born late in the game.
My piano teacher always said that playing the piano was about being able to express the composer’s intentions to the audience. If you play every note perfectly but lack nuance in dynamics and rhythm, the audience will sense that something is missing. She told me that every performer makes mistakes, and the greatest performers are the ones who hide them behind musicality. With this new mindset, the piano became less about “perfecting” the score and more about expressing a message.
At the Cleveland Clinic Gala for Pediatric Research, I had the opportunity to perform in front of 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. Three years earlier, I thought it would be impossible for me to learn the piece. The piece began with rising and falling arpeggios, repetitive left-hand notes—just as tumultuous as the anxiety and unease I felt about my future with a disability. But in the finale, my left hand and my 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 career as a pianist and, more importantly, the uncertainty about myself. Despite the difficulties and doubts I had at the beginning of my life, I learned to live and cherish the fact that I was born different. And, I couldn’t have done it without the support I received from my current friends, piano teacher, doctors and parents. I’m also very lucky to have been able to find something I love and boost my self-esteem and self-perception. However, for many born people like me, their experience is not the same.
Disability is not uncommon. More than a billion people in the world have a disability, and this number is only growing. Additionally, one in 10 Asian Americans has a disability. Despite their prevalence, disabilities continue to be stigmatized in society. According to the World Health Organization, a person with a disability is “three times more likely to be denied healthcare, four times more likely to be abused by the healthcare system, (and) 50% more risk of incurring catastrophic health expenditure”. Racism also plays a role in this problem. Jennifer Lee, the founder of the Asian Americans with Disabilities Initiative, was told she couldn’t have Crohn’s disease because she’s “Korean American.” Among Asian Americans, the myth of the model minority also prevents many 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 when it comes to assistance and resources.
The biggest problem that needs to be addressed is the stigma surrounding disabilities, especially in childhood. This is the tricky time when someone is building their confidence and learning more about themselves. This period was when I lost some of my self-esteem because I was told I was weird and disgusting for being born the way I was.
It is time to integrate more disability education into our school systems. We need to teach children that being different is good. And for children with 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 such as the American with Disabilities Act National Network, the American Association of People with Disabilities, and the National Organization on Disability work to raise awareness of disabilities and empower people with disabilities.
You, the reader, can do your part by making sure you treat everyone equally and by being careful what you say around someone with a disability. Stop insensitive jokes when they happen. Show your support and love for those who navigate the world differently from you.
MiC columnist Daisey Yu can be reached at [email protected]