So there I was, eleven years old, in a plastic surgeon’s office. My shirt was off and the doctor was taking measurements of my chest. As my doctor strung the measuring tape over my clammy skin, I was surprised she didn’t feel my heart pounding against my ribcage. She was photographing my naked upper body and I never felt so exposed in my life. I may forever be in their computer system, as nothing but the couple bytes it takes to store a picture. As the doctor marked my body with Sharpie, I noticed the complete and utter frigidity of the room, but the reason I wrapped my arms around myself was for comfort. The doctor was kind and acted like I was no different than any of her other patients; maybe because she wanted to ease my anxiety, or maybe to her, I was just another body to fix. In the waiting room I had seen several elderly people, probably trying to regain their youthful glow, but there was nobody like me. “It must feel nice for the doctors to get a younger patient!” my mom said. She helped me hide my disability my whole life, and I still thank her for that. She wanted me to have a normal childhood, to be respected by those I encountered.
Sitting in that waiting room, all I wanted was to fit in somewhere. We drove six hours to visit this plastic surgeon and stayed at my cousin’s house the night before the appointment. At dinner, when her husband asked why I needed to go to a doctor so far away, my mother hesitated. “Oh…well…she is getting assessed for injuries for…you know…her sports.” That night, lying on the mattress in their basement, I stared at the ceiling, thinking. This was the first time I had to face my disability head-on, and I had no idea what to think of it. I felt trapped in a cage, but whenever I started picking at the lock someone swatted at my hands. I didn’t know it at the time, but it wouldn’t be very long before I broke out. My own body was taboo even among my family, myself. On that trip, I tried to pretend that we were on a secret spy mission, but the truth kept crawling its way back into my thoughts, infiltrating my childish innocence and curiosity. Typically spies only need to hide information, I needed to hide my life.
Soon after birth, my parents realized that there was something wrong with me. I collapsed every time I crawled because my left side was weak. They took me to the hospital where they found out that I have, and will always have, Poland Syndrome. If you haven’t heard of this, don’t feel bad. I only discovered my diagnosis when I overheard my mom explaining it to the plastic surgeon. Not too much research has been done, but here’s what I know: Poland Syndrome occurs in one in every 20,000 to 100,000 people; the statistics are uncertain because many aren’t diagnosed. It occurs twice as frequently in males than females (I’m the latter) and tends to manifest on the right side of the body (it’s on my left side); I’m truly one-in-a-million. I am fortunate in that I’m only missing my pectoralis major and have weak ribs, because some people with Poland Syndrome have webbed fingers or shortened arms. The cause of Poland Syndrome is unknown; it might always be because it isn’t fatal, and there are more urgent health anomalies to solve. Growing up, I was ashamed and scared of my disability. Whenever I tried to bring it up to anyone I fought back tears, and I wore bright, mismatched clothing so the last thing people would notice was my muscular imbalance. In my childhood I hung on to the unreliable fact that Amazonian women used to remove one of their breasts so they could shoot their bows better. If all else failed, I could retreat to a solitary life in the jungle.
The more I read about others with disabilities, the more I realized that there are people out there who have also experienced little room for body diversity in society. Take Darcey Steinke, author of “My Stutter Made Me a Better Writer,” as an example. Unfortunately, she was conditioned early on to hide her disability as well. After years of society rejecting her stutter, Steinke’s mother enrolled her in a speech therapy program, with the goal of completely eliminating Steinke’s disability to assimilate her into mainstream society. For a quarter of a century, she passed as a non-stutterer, but she had a realization when she went to a party for people with speech impediments, most of whom were in favor of accepting their stutter; they shouldn’t change for society, society should change for them. For so many years, Steinke was afraid of vulnerability: “Whenever I stuttered, I disassociated: That struggling human was not me” (Steinke). Finally, she began to see her stutter is her unique impediment rather than a curse.
My epiphany came not at a party, but while buying a swimsuit. On a cold, blustery day in February, I found myself swimsuit shopping. It was my first year on my high school’s ski team, and we were in Boyne, Michigan for a race. My teammates had invited me to hang out at their hotel’s pool, but I hadn’t packed a swimsuit for the trip.
Actually, the problem was much bigger than that.
Swimsuit shopping had always been something I avoided; it reminded me that no matter how hard I worked, I would never have the ideal body. For this reason, I didn’t have a swimsuit and whenever I needed to get in the water, I would just wear a sports bra. But, my mother wouldn’t let me this time. So there I was, ready to face disappointment. As soon as I entered the store, I looked for something that checked all of my boxes: extremely modest, bright patterns, and ruffles; not my taste at all, but it distracted people from my birth defect. Behind my screaming doubt I heard my mom’s footsteps and the cashier shuffling papers. As I searched, my feet got heavier and my frustration solidified in my throat; I couldn’t breathe. Nothing was checking the boxes. A flurry of questions rushed in: What will I wear for my prom dress? My wedding dress? My head was spinning, and all I wanted to do was get out of there. I don’t know why this particular instance sticks out, as I’ve gone shopping for swimsuits relatively few times, and each had been equally horrible. So, when my mom showed me a Speedo one-piece, I nodded my head and bolted out of there. But to my dismay, exiting the shop didn’t make breathing any easier. The drive to the hotel was dreadful, and in the pool I employed the other techniques I learned over the years: drape my long hair over my shoulder so it covers the left side of my chest, and always cross my arms.
Over the past year and a half, I’ve pushed myself to challenge my vulnerability. I wrote about my disability and slowly opened up to more people. I weighed the pros and cons of “coming out” (Brueggmann) about my disability. The more I thought about it, the more I realized that my current reality was suffocating me. I told my mother that I didn’t want to hide my disability anymore, and she couldn’t understand why I wanted to do such a thing. People might stare, or judge me before they meet me. But over the previous months, I realized that my disability was only a curse if I made it one. I was no longer going to let my vulnerability stop me from being my authentic self.
Last spring, I purchased a plain, black, V-neck bikini top. It checked none of the boxes, and for the first time in my life that was a good thing. I showed it to my mom, who gave me a look that screamed are you really going to wear that? This part of me that was kept in the dark for so long was now on display. This was my stutter party. I finally began to feel the liberation that comes with accepting one’s disability as well as all the good my unique living experience has given me. My disability enhanced my compassion for people while at the same time toughening me up. And even if my situation lacked any positives, I now consider it a “unique embodiment” that I love instead of a “societal repression” that I loathe (黃小竹, 00:04:25 – 00:05:42). Once I unlearned the concept that a disability is something to eradicate, I went about my life not in fear, but in love: love for myself, and love for anyone who struggles with self confidence.
While I’ve travelled far in the past fifteen months, I have such a long way to go, and now I’m faced with new questions that stem from Steinke’s extensive experience as well as my own. If I’m not going to hide my Poland Syndrome, should I bring it up so people don’t spend our whole conversation trying to figure out what’s wrong with me? While I’m no longer considering plastic surgery (that would only fix me cosmetically), would I seize the opportunity if there were some way to “fix” me? In what situations is passing as abled okay, if any? As a person with a relatively mild but rare birth defect, where do I fit within the disabled community? Steinke and I have asked ourselves these questions countless times throughout our lives, and the answers are unclear and nuanced. These questions ask us to solidify our values, something I’m not yet prepared for. I doubt I’ll ever know all of these answers, and new problems will arise as I grow older and wiser. But, one thing is clear: now that a huge weight has been lifted off my chest (no pun intended), I don’t want to go back, and it pains me that society has conditioned people like my mother that disabilities are something to hide, to isolate from the rest of the population.
Making a life-changing realization is one thing, abiding its rules is another. I’m still in the process of warming up to my disability. It takes a conscious effort to not hide my body, even from those I’m comfortable with. In a similar light, buying a swimsuit is one thing, wearing it is another.
Five girls were walking down the beach and the sun was shining. The cool blue waves of Lake Superior lapped up against the shore, aligning with my heartbeat. The sand burnt our feet but there was a cool breeze. We were one. Before that day, none of my friends knew about my disability, but I wore my new swimsuit anyways. At first, I was really nervous; these girls thought I was confident, brave, even a little sassy, and now I was letting them in on my biggest vulnerability. I draped my hair across the left side of my body and stayed out of their direct line of sight. While we continued a lighthearted conversation we’d been carrying all day, I had something bigger on my mind. After a mile and a half of walking and worrying, we finally arrived at the rock we would be jumping off of. I’d never swam in this spot before. One of the girls was worried; the leap was so high! I was only mildly unnerved though; I’d made bigger jumps before. While the others were convincing Nina that it’s not that scary, I made my move. I planted my feet and took a deep breath. Right before I lifted off, the wind picked up and my hair flew behind me. I closed my eyes and jumped.
Works Cited
Steinke, Darcey. “My Stutter Made Me a Better Writer.” The New York Times, The New York Times, 6 June 2019, www.nytimes.com/2019/06/06/opinion/reading-writing-stuttering.html.
黃小竹. “Examined Life – Judith Butler & Sunaura Taylor 720p.avi.” YouTube, 06 Oct. 2010, https://www.youtube.com/watch?v=k0HZaPkF6qE&feature=emb_logo
Brueggmann, Brenda Jo. College English. vol 59. Oct. 1997.