Written by Ericka Asmus ’24
Over this past Spring Break, I attended the event of a lifetime, a culmination of the dedication of countless people towards radical self love. It was the merging of intersecting marginalized identities to create a space for loving ourselves and each other. This event was an adaptive fashion show where I and five other women with a rare disease called Poland Syndrome were celebrated for our experiences. Poland Syndrome is a birth defect that leaves individuals with missing or underdeveloped ribs, breast tissue, pectoral muscle, and/or hands on one side of their body. The disability is physical, but due to its nature it also manifests itself in the psyche of those who have it, especially women. I can’t speak on behalf of the other women at the show, but I can tell my own story.
I was diagnosed shortly after I was born when my parents took me to the children’s hospital because I was too weak to crawl. The doctor told my parents that if I didn’t start strengthening my affected side soon, I might not be able to use it for the rest of my life. My family tells me stories from my first years where I was “catching up” with my peers: falling off the merry-go-round and hurting myself, falling on my head countless times at gymnastics practice…I was too young to remember but these events impacted me nevertheless.
Luckily, with enough hard work and support, I was able to grow up with limited physical restrictions and have actually become known for my physical strength. But as I made my way through puberty and I watched in horror as only one of my breasts grew, I realized that my disability expanded beyond the physical: the real struggle was living in a society that told me my body was wrong, immoral. While my physical and psychological pain were largely disregarded, I was told many times that my deformity should not be visible to onlookers, like I owed them the comfort of “normal” breasts.
I still remember visiting the plastic surgeon when I was eleven, the doctor marking me up, taking pictures of the bare chest I resented, and talking to my mother like I wasn’t even there. Consistently throughout my life society has told me in one way or another that I should be ashamed of my body. I can’t visit a doctor without them bringing up plastic surgery. The prosthetics I’ve been given serve no function except to give the impression that I have two breasts. I’ve gone to a physical therapist for back pain before and the first thing he did is give his opinion on whether or not I should have plastic surgery.
These are the prosthetics given to women with Poland Syndrome and breast cancer survivors. I haven’t worn mine in years.
People are often in shock and disbelief at how I’ve been treated because of my body. I remember changing in the corner in locker rooms while girls with perfectly normal breasts complain that they are too small or uneven. Being called names like “concave” and being told “It’s not that bad” by people I thought I could trust. People have weaponized my own body against me, using my sensitivity to their advantage. I soon did resent my body: I held it like a secret so close to my heart that I couldn’t talk about my birth defect to anyone without tearing up, not even my mom. I did things to my body that reflected this hatred and formed habits that took tremendous effort to unlearn.
When I had dug myself so deep in a hole, when I saw nothing but darkness, I peered up and saw a small light up above. For my college application essay, I decided to write about my experience with Poland Syndrome for the very first time. I’d never put my thoughts into words or given myself credit for all that I’d gone through. Sharing my experience filled me with more joy than I’d ever felt before. Such a huge weight had been lifted off of me, I felt like I was flying. I now had a clear path for climbing out of my pit of despair: being true to myself required an enormous amount of vulnerability, but the reward was that I would be liberated from shame.
I’ve spent my time at Dartmouth intentionally training myself to become comfortable with who I am even if I face disapproval. It started with telling my close friends, and then professors, and then the world. I’ve applied my unique experience to all sorts of classes, from Indigenous History of the Andes to Product Design to Environmental Chemistry to Black Feminist Thought. Through these courses I’ve gotten the amazing opportunity to gain insight about myself that I was lacking through direct representation. When I saw no one that looked like me in the mass media, I became that person. This journey was by no means easy: I learned some things that have brought me great pain and have set back my progress, but not hiding my body has become an absolute necessity and a reminder of my persistence and heart.
If I lacked the courage or motivation to seek out others with Poland Syndrome online, I never would have found out about the fashion show, and I definitely wouldn’t have felt confident in sharing my experience with the world. This trip was not only the first time I would meet others with Poland Syndrome in person, but it was also my first time traveling internationally, and I was doing it alone. I couldn’t have done it without the support of the Student Wellness Center where I’ve become a regular for Wellness Check-Ins when I need guidance or even just someone to listen.
Like I said earlier, I can’t speak for the experiences of my friends with Poland Syndrome, but it is safe to say that no matter who you are, it is not easy to be a woman with only one breast in a society where a woman’s value is based on her appearance. Spending time with all of these incredible women, the collective love we’ve devoted to ourselves is unimaginable.
(Left) Posing with Lilly Alfonso and (Right) showing off my strength in a dress designed specifically for my body and interests.
Besides just getting to spend time with my new friends, we also got to work with internationally recognized Malawian fashion designer Lilly Alfonso and her students. We collaborated with them to create outfits that celebrated our differences and promoted them professionally. Lilly’s work is dedicated to promoting her rich African culture and works to uplift young people in her communities with the 100 Year Plan. The students we worked with were named Wongani, Joshua, and Hope, and besides creating some incredible outfits, they approached us with an open heart and accepting ears, a godsend.
The fashion show reached beyond the individualistic notions of self love we often hear about: we used this event to unite in our experiences against the forces that make it difficult for marginalized people to exist in this world. Our identities ranged widely, but we met each other with compassion and support, a really beautiful and revolutionary thing. It is radical to promote self love when society tells you to be ashamed of your true self. I find comfort in knowing how intentional the fashion show was on an individual and organizational level.
An important tool for taking care of myself to become the best change-maker possible has been meditation, but it is not always easy. I really struggle with body scans; my relationship with my body is complicated, and attempting to appreciate my chest brings up a lot of uncomfortable emotions which bring me out of concentration. It is important to push your comfort zone, but it becomes too much and my trauma response lingers with me for the rest of the day. Besides that, I sometimes wonder how accessible certain phrases are to disabled folks. Through talking with others I’ve found that I’m not alone in my concerns, that fortunately there are body scans out there for those with trauma sensitivities and ranging abilities. One recent meditation directed me to view pain with curiosity, as a sensation. This has helped tremendously, as I’m usually experiencing back pain that can send me spiraling if I focus on it. My practice is still a work in progress, and so is my relationship with my body. Loving yourself can be really hard, and the best thing you can do is help to build a world that is safe and welcoming for all bodies.
Historically I’ve struggled to speak up about my experiences because when I have, nobody wants to listen to my frustrations; they’d rather keep it to a feel-good story about me personally overcoming adversity. In reality, my experience encompasses an existence in a body I am persistently told I should change. I recently read The Cancer Journals by Audre Lorde, which chronicles the loss of her right breast as a result of breast cancer. She provided rare and valuable perspectives, and serves as a reminder that anyone with breasts is at risk of losing them. She reminds me that “silence has never brought us anything of worth.” The romantic notion of bottling up my pain is what almost ended me. My silence would be complacency in a world that rejects bodies outside of the norm; my silence would be a loss for us all. I’m proud of myself for speaking up even when there’s an overbearing voice in my head telling me that nobody cares.
If you see a little bit of yourself in my story, even if you don’t have Poland Syndrome, I recommend a book that I’m reading called The Body is Not an Apology by Sonya Renee Taylor. If you aren’t up for a whole book, she also has a wonderful Ted Talk on the art of radical self love. If you are struggling with body image issues, I want to remind you to a) treat yourself to some rigorous self compassion, and b) understand that your struggles are a part of a system that profits off of body hatred that we should all work to dismantle. You are allowed to honor your anger and discomfort. Real self love is about feeling the good and the bad and acting with intention.
I’d also like to provide a big thanks to the Student Wellness Center and Center for Social Impact for their financial support, Lilly Alfonso and her students for being so wonderful to work with, the Birmingham Children’s hospital for hosting this event, and Sam Fillingham, the CEO of the UK Poland Syndrome Charity for supporting us all along the way. I’d also like to thank my friends and professors who have been so supportive and reminded me that my voice matters.
Ericka Asmus ’24