Your Accidental Activist

Somehow, I have become an activist. This was never my intent. All I ever planned was to write my memoir. I did not intend to be a public speaker, but now I keynote all over the country. I also did not intend to write a blog, and yet here we are…I am writing this blog and you, blessed reader, are with me.

I definitely never intended to be an activist for Face Equality. Frankly, I had never heard of Face Equality until after Flashback Girl was released. Even as a teenager, I knew that Hollywood unfairly and repeatedly portrayed disfigured people as being villains (Darth Vader, Voldemort, Freddy Krueger, most James Bond villains etc.). Certainly, I have felt the weight of stigma and prejudice all my life. However, I never knew there was an international movement advocating for the equal treatment of facially different people.

I was fully behind this movement, but wasn’t actively supporting it until May, 2022, when I wrote a piece about Hollywood and Face Equality that reached a larger audience. Armed with this essay, on the advice of my high school friend Suzie, I reached out to the Writers Guild of America. From there, I was invited to speak. My presentation was graced by photos from the burn community, many of whom attended the talk virtually. Every one of them volunteered their photo to show that burned people are kind, generous, capable, and decidedly not evil.

I am now on a full-fledged mission, with two major goals. I aim to inform and inspire the entertainment industry to cease prejudicial portrayals of disfigured people. I also aim to educate the general public that disfigured people are being maligned, that these portrayals harm us, that we deserve better and that we are ordinary people, like everyone else. In other words, I want to eliminate stigma against the facially different in the United States.

Like Dorothy in the Wizard of Oz, I have been joined by companions on my unexpected journey. The heads of The Phoenix Society, Face Equality International, and Facing Forward all generously stepped forward, offering desperately needed guidance and wisdom. Recently, I presented at the Center for Neuroaesthetics at the University of Pennsylvania. I sat at a conference room filled with scholars and researchers, many of whom research prejudice against the disfigured. I was nervous; I am no Ivy League researcher. But my story inspires people, and I speak it well. At the end of my presentation, the head of the group, Dr. Chatterjee, kindly offered, “How can we help you?”

Connections are being made. One person introduces me to another, and that one to the next. One group has offered to help us write a fact sheet about disfigurement. Marni, my old friend from my college a cappella group, introduced me to a major philanthropic organization.

Momentum is building, beyond my efforts. It’s been a bit … magical.

Here’s the thing: as soon as people realize how routinely movies and TV shows feature villainous disfigured characters, people are uniformly shocked and aghast.

“I never thought about this.”

"That is awful, how did I never notice this?

“Now that I heard your presentation, I see the prejudice everywhere.”

Once peoples’ eyes are opened, it is easy to convince them that these misrepresentations need to stop, right now.

Think about it. Estimates are that about one in every 100 people has some sort of facial difference (Julian & Partridge). That means most folks are not regularly encountering disfigured people. If you don’t know anyone who is disfigured, the only exposure you will have to disfigured faces is through movies or TV. If those representations are unrelentingly negative (which they are), how can we expect people to have fair impressions of the facially different? Why would we expect anything different?

Hollywood has done an admirable job of updating its representations of other minorities. Black people, Brown people, Jewish people, LGBTQ people, Native Americans, intellectually disabled people, physically disabled people, emotionally ill people, overweight people… efforts have been made to reduce negative stereotypes for all these groups, sometimes even approaching positive representation.

Not the disfigured. Sadly, not for us.

Not yet.

References:

Julian, D., and Partridge, J. (2007). The Incidence and Prevalence of Disfigurement. London, UK: Changing Faces

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.