MIGA Swimwear: Sharing Stories in the Disfigurement Community to Combat Stigma
posted by The Body Positive / May 17, 2018
I think it was around the time I was eleven years old that my feet started to look funny. All my other toes kept growing normally, except for the fourth toe on both of my feet. It’s not like my feet looked like a Sally Hansen’s commercial before, but now this fourth toe was reluctant to go back in its place and just appeared to float on top of the third and fifth toes. At first I found it comical, I would tell my sister “Look! I can’t fit all my toes in my slippers!” leaving the one small toe outside. This was fifth grade. I was a charming combination of the class-clown and a tomboy.
Fast forward to eighth grade, my happy-go-lucky approach changed suddenly to professional concealment. Sandals, flip-flops, and any shoe that had open toes, became off-bounds and buying shoes became an impossible task because not only were my feet deformed, they were also wide. It also didn’t help that every time I would try shoes on, I would curl up my toes, scared the salesperson would judge me.
There were times, however, when I couldn’t rely on close-toed shoes to do the trick. Once, during a beach trip with friends, I decided to test my friend’s attention to detail and I frolicked barefoot. Quickly after, however, a girl remarked “why is your toe SO freaky?” followed by a hyena-like laugh and the stare of all the other girls. Just like that I was outed. I could hear the talking behind my back, “Why do her feet look like that?” I could not wait for the trip to be over.
Just like that I was outed. I could hear the talking behind my back, “Why do her feet look like that?” I could not wait for the trip to be over.
This was not the first time I was asked about my feet. When someone would ask me why my feet look the way they do, I always brushed it off with, “That’s just the way they are,” or, “that’s how I was born.” which at best, came out as a quick answer and at worst, came out as an aggressive retort. I felt vulnerable and isolated, always looking around beach chairs for toes that resembled mine. Just a couple of years back, a friend asked me and I remember thinking: How is it possible that I am 25 years old and I still feel like I’m five when someone asks me about my feet? It quickly dawned on me that this question was always going to come up, no matter how old I got.
Later that year, I decided to focus my master’s degree at Central Saint Martins in London, to figure out a way to lower the stigma I felt towards my disfigurement. I met with Dr. Lisa Williams, a clinical psychologist of the Burn’s Unit at Chelsea Westminster Hospital, to get an understanding of the psychological toll of looking differently.
In the Oxford Handbook of the Psychology of Appearance, there were a couple of papers that compared the psychological toll of having visual versus non-visual disfigurement and how those with visual disfigurement are better at coping with their disfigurement since they have to “show” it on a day-to-day basis. I have to admit that when I read this, I felt deflated and powerless. And it felt true to me; the fact that I could hide my disfigurement daily if I chose to, made it ten times worse when I couldn’t conceal it because all of the anxiety I pushed under the rug flared up when I was in an environment where I had to be barefoot. However, Dr. Williams told me that academia usually gets it wrong. She said that it doesn’t matter if you have a visual or non-visual disfigurement, what matters is how you feel about it and your experience (many factors like how much the person’s family values appearance can also play a big role in this).
I think conversations where we are comparing disfigurements, scars, or even weight can be a slippery slope because each person’s experience is different.
Dr. Williams told me that a big part of the recovery process was to come up with a narrative that explained the change in appearance; the stronger the narrative, the less stigma the patient felt. Even though I am not a burn survivor, I couldn’t help but think about all those times I froze when people asked me about my feet and I started to think, how many others could benefit from creating their own narrative? Dr. Williams also said that many of her patients had difficulty finding bathing suits that they felt comfortable wearing. Right there and then, I had my eureka moment! I could design customized garments with stories to lower stigma related to appearance!
a big part of the recovery process was to come up with a narrative that explained the change in appearance; the stronger the narrative, the less stigma the patient felt.
I had the opportunity to meet and design for five wonderful ladies: three of them had burn scars, one had facial palsy, and one, just like me, had congenital disfigurement. Throughout the design process, I realized that it really didn’t matter what type of disfigurement you had, the experience was very similar: the stares, the comments, the questions and the coping strategies. Learning about one another’s experiences became an empowering lesson. All of a sudden, I no longer felt alone and isolated. I felt like I had a group of resilient and caring women that I could rely on when coping with my disfigurement got tough. I finally felt understood.
Since then, I have decided to continue my project and have founded MIGA Swimwear. MIGA Swimwear is a swimwear line inspired by women that have disfigurement, from birth defects and burn scars to paralysis and skin diseases. Our mission is to empower women to share stories about their bodies and their resilience to combat stigma, creating a community of self-love and self-acceptance that promotes empathy and awareness towards the disfigured community. For our first collection, we are working with the Burns Unit at NY-Presbyterian Hospital, and have designed pieces inspired by the stories of burn survivors. This collection will be available through Kickstarter in June. To get more details please sign up on our website or email me at marialuisa@migaswimwear.