Why Disfigurement?

Last week, I had the chance to attend NYU Langone’s Alopecia Support Group. As I was explaining what we do, one of the attendees told me that she found it a bit off-putting that I was using the word disfigurement. This is not the first time that I have been told this.

I can understand that people don’t like to be described as "disfigured" because I used to dislike being described that way too. This is, in part, because of the word’s prefix; dis- implicates that there is something wrong or negative with ones figure. I would say, however, that people don’t like using this word mostly because of its negative connotation as it comes from the stigma felt by being considered different, faulty and/or not good enough by society.  

I also understand why people do not like when someone else gives them an identity that they do not relate to. It is not only disrespectful, but it can also cause pain and lead others to withdraw from society. This is why I make sure to pay close attention to the words that our volunteers use to describe their experience; I strongly believe that language is a powerful tool for healing. Thus each of our bathing suits comes with a bag detailing the story behind our volunteers’ disfigurement, as using the exact words that they themselves use to describe their experience helps them own and embrace their narrative.

When people ask why I use the term “disfigurement” I explain that I have done my research. I have corroborated with key organizations, like Changing Faces UK, that the most relevant term to encompass all visual differences from burn scars to facial palsy, among others, is disfigurement. This obviously becomes problematic when you want to use one word to describe something as vast as it is universal, because, as my geneticist once told me: “in a sense, we all have something.”

My concern with using any other word other than disfigurement, be it visual or physical difference, is that by doing so it is not clear enough what we are referring to. A physical difference can be having brown hair, as opposed to black, for example. If we are not clear about what we are referring to or if there is any confusion as to what we are trying to do, we will fail to break the stigma that surrounds not only the word in question, but the community it seeks to represent.