One day about nine years ago I was at the after school care center – basically the gym where many students stayed if their parents couldn’t pick them up right away. We usually had a break outside and time to study inside while waiting for our parents to come through the door. However, we did something new that day: a get-to-know activity that required everyone to write a few facts about themselves on a note card. I remember writing some true but surprising facts about myself. I thought this note card would stay between me and two or three other students, but unbeknownst to me, that special day had a huge impact on my life and how I perceived myself forever.
After filling out the note card, I sat on a tiny blue chair in the middle of the gym and chatted with my friends around me. We were waiting to go to recess, play on the playground and do what kids usually do. To my surprise, the organizer of the daycare went to the front, slips of paper in hand. She started reading the cards one by one and asked the children in the room to guess who wrote the cards. Sweat ran down my forehead as she got closer and closer to mine.
Then she read my card: “I have four fingers and three toes.”
Even now, when I think back to that time, I was so embarrassed and shocked that I can’t even remember the emotions coursing through my body. Audible gasps filled the gym and I felt my face get really hot. My friends gave me worried looks before one of them volunteered my name to continue the activity.
I’ve always been proud of myself for having accomplished so much — playing instruments, taking art classes, swimming, attending soccer practice, defending my spot as the fastest scribe in my class — while essentially leading the life of a normal kid . When we were finally let go for break, a group of girls younger than me approached me and went so far as to call me “alien”. At that moment none of my accomplishments counted. The feeling of shame enveloped my body. Luckily, my friends immediately came to my defense.
When I got into middle school, I held onto this memory very much when I interacted with others. I thought a lot about which hand to raise in class, always covering my left hand with my sleeve. This made me more withdrawn and introverted, belying the nickname “social butterfly” I earned in elementary school. I was too scared to let people see my hand for someone to call me alien again. It’s really shocking and appalling how much beating up on someone has affected my self esteem. It’s easy to make an ignorant remark about someone, but it’s difficult to be the one who keeps track of every little action in your life.
All my life I have only voluntarily brought up my disability while speaking to others. Most of the time, I answer questions the way I get them: “How did it happen?” and “Does it hurt?” My responses were, “Yes, it’s possible to just be born with a disability in your limbs” and “No, it doesn’t hurt.” Every day I desperately hoped that no one’s gaze would linger on my hand for too long. It wasn’t until the latter half of high school that I felt 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 went to for my hand and foot exams. I could hardly 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 have regularly sent videos of my concerts to the doctors to show the progress I am making with my left hand. Since the hospital editorial team stumbled upon my story, they wanted to do full coverage and share it with other inspiring 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 gear around my house. In the first section, 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 I heard my mother 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 lead a normal life. When I was born the doctors noticed that my left hand had a huge gap separating my pinky and ring finger from my index and thumb. My parents had gone to several doctors for advice on what to do and were horrified by a doctor’s suggestion that I cut off the two offending fingers that were sticking out of my hand. Just when there seemed to be no hope, they found my current resident physician at the Cleveland Clinic, who could stitch the gap in my left hand and has been monitoring my bone development for years. My doctor was also the one who encouraged my parents to enroll me in piano lessons and that’s how I started to love myself and my body.
At first, piano seemed to be an obligatory duty – practice, learn a new piece, perform at concerts. 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 changing notes so my left hand could play them. I started investing more when I spent hours learning how to play movie soundtracks over the summer. When I auditioned for my middle school jazz band, I was faced with the reality that I would probably never be able to play the piano to my full potential because I didn’t have enough fingers. As I watched my competitors effortlessly crush one of Chopin’s difficult etudes, I cast a longing look at my own hands. I was never able to achieve the success that was intended for me because I was simply born into the game.
My piano teacher always said that playing the piano is about expressing the composer’s intentions to the audience. If you played every note perfectly but lacked the nuances in dynamics and rhythm, the audience will feel something is missing. She told me that every artist makes mistakes and the greatest artists are the ones who hide behind the musicianship. With this new mindset, the piano was less about “perfecting” the notes 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 physicians and families. I chose the third movement of Beethoven’s Moonlight Sonata for the thundering confidence I’m aiming for. Three years ago I thought it would be impossible for me to learn the piece. The piece began with ascending and descending arpeggios, repeated left-hand notes – just as tumultuous as the fear and unease I felt about my future with disabilities. But in the finale, my left and right hands worked together to end the piece on a determined chord. I took this performance as a way to show that I had overcome the uncertainty of my piano career and, more importantly, the uncertainty about myself. Despite the difficulties and doubts I had at the beginning of my life, I learned to live differently and appreciate being born differently. And I could not have made it without the support I received from my current friends, piano teachers, doctors and parents. I’m also very fortunate that I was able to find something I love that boosts my self-esteem and self-awareness. However, for many people born like me, their experience is not the same.
Disability is not uncommon. More than a billion people in the world suffer from some type of disability and this number is still growing. Also, one in ten Asian Americans has a disability. Despite its prevalence, disabilities continue to be stigmatized in society. According to the World Health Organization, people with disabilities are “three times more likely to be denied health care, four times more likely to be mistreated by the health system, and (and) 50% more likely to suffer catastrophic health care expenses.” Racism also plays a role in this topic. Jennifer Lee, the founder of the Asian Americans with Disabilities Initiative, was told that because she was “Korean,” she couldn’t possibly have Crohn’s disease. Among Asian Americans, too, the myth of a model minority discourages many from seeking help. This notion of a “model minority” creates unrealistic expectations for Asian Americans to succeed under duress. As such, they are likely to internalize their struggles and be overlooked in terms of support and resources.
The biggest problem that needs to be addressed is the stigma attached to disability, especially in childhood. This is the tricky time when someone builds their confidence and learns more about themselves. During that time I lost a little bit of my self-love because I was told that I was weird and gross for being born the way I am.
It’s time we incorporated more disability education into our school systems. We need to teach kids that it’s okay to be different. And for children with disabilities, we should celebrate their differences and encourage them to pursue their passions.
It is currently our social responsibility to make the world more accessible. Organizations like 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 people with disabilities. Stop the insensitive jokes when they happen. Show your support and love for those navigating the world differently than you.
MiC columnist Daisey Yu can be contacted at yudaisey@umich.edu