By: Charlie Manzano
Cancer therapy doesn’t prepare you for having disfigurement. When I was 17 years old, I was diagnosed with melanoma underneath my right eye. At first, I thought it was a blemish or acne but then I found out it was something more. I had to have two rounds of reconstruction surgery in order to remove the tumor from my face. After my surgery, I was left with a “facial distortion.” It was a while before I found the word: disfigurement.
Prior to my surgeries, if I would have seen a man on the bus with a visible difference I would have been scared. After my surgeries, I began to understand what life is like with disfigurement. For the first couple of years after my facial reconstruction, the question I was asked the most was “what is wrong with your face?” I also started to notice teachers talking down to me; they thought my disfigurement affected my mental capacity.
When I discussed my disfigurement with my mom, she told me I had to be more body positive. I quickly understood, however, it is not only about my body positivity, or lack thereof, it’s about society. Society looks and treats you differently because you look differently.
Cancer spaces are all about outliving it and while that focus is important, they forget that you have all these other needs. There aren’t many resources for people like me to learn how to cope with disfigurement, so I decided to take matters into my own hands. Next April, I will be speaking at CancerCon about cancer’s permanent changes to the body, among them the impact of living with disfigurement.
I also learned about the difference that it makes to have disfigurement as a man, compared to a woman. I transitioned after my second surgery and I remember telling my plastic surgeon that I didn’t like my face. He made me feel bad for caring how my face looked. As a woman, his reaction would have been different. Men with disfigurement are not supposed to care about how they look, but we do. It also made me realize how women-focused appearance and body image initiatives are, making them in-accessible to men. Of all the intersections of my identity, having disfigurement has brought me the most shame and that shouldn’t be the case.