Let's talk about my face
Ani Spooner writes about life with a port wine stain, and why she's speaking out once again
It's five in the morning. I'm 12 years old. I walk through our dark, quiet house to the bathroom where I spend an hour and a half applying layer after layer of cover makeup to my face. It's lonely performing this daily ritual while everyone else in the house is sound asleep.
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I did this because I was born with a port wine stain that covers over half of my face. This birthmark is named after the drink because it looks like red wine splashed on the skin.
For some people born with a port wine stain, there are complications such as epilepsy. But I'm somewhat "lucky" that the greatest complication I've had in my life is dealing with the daily disdain, pity, curiosity and verbal abuse of people I encounter out in the world.
I was also born with another difference of sorts — the gift of a singing voice. By age 10, I was being invited to perform at various events, sharing a part of myself that eventually defined me as much as my birthmark does.
It was when I started performing on stage that I began the elaborate and lonely makeup ritual. Why? Because it allowed me to hide the birthmark that felt like a secret to be hidden at all costs, a part of myself that was so shameful that, if revealed, could expose me to ridicule and exclusion.
As a kid, I rarely went swimming with friends and I tried not to do anything that would make me sweat off my camouflage.
This worked for me for years, until it didn't. At age 24 I suffered burnout at university while, ironically, majoring in theatre, where I used my years of hiding to play the role of others. It was a moment of reckoning, and surprisingly, I remember feeling strangely thankful that it had arrived.
After that, I took off my makeup and for the first time appeared on stage to sing without it. I literally shed my mask. It felt like I was embracing who I am and saying, "I'm here. I'm talented. I'm beautiful, and you will look at me on my terms".
I performed with my band, went on tour and spoke out about self-acceptance in media and magazines.
I am literally shedding my mask.- Ani Spooner
Then it all came to a screeching halt. A stalker targeted me, sending a link to a website called uglypeople.com showing my face. It went out to my entire fan list in an e-mail that looked like it was coming from me. "Look at this Ugly," the message read.
The moment I clicked on it is the moment I thought, I've had enough. I've put myself out there, spoken out for people with differences and fought a good fight.
Going public, again
I'm 50 now. My children are teenagers and I haven't been on stage in almost two decades.
I feel it's time again to come forward about what it's like to be a person living with a facial difference. I am speaking publicly about this and working toward a book.
I'd be lying if I said I wasn't worried about trolls. But I feel compelled to use my voice. Being visible is the only way people will learn to accept those of us who are different.
5 tips on interacting with people with facial differences
- Don't stare. Studies show that when we're looked at for more than 3.3 seconds we feel very uncomfortable.
- Don't ask personal questions. If a person with a facial difference doesn't bring it up themselves, don't ask.
- Don't recommend treatments. Trust that they know about the latest treatments or have already gone through many operations or treatments in their lives.
- Don't pity. It may be well-meaning, but it just feels like superiority, condescension or contempt.
- Stop using the term deformity. Instead, use the term facial difference.
Ani Spooner is a public speaker, musician and visual artist. She's also a mom of three and soon-to-be author.