Why I Said Yes to Body Bizarre
When I was contacted via email by a producer from TLC/Discovery’s show Body Bizarre about featuring me in a segment, I took a day to think about it, even though I pretty much knew from the outset that my answer would be “yes.”
The press on Body Bizarre reads as follows: “Body Bizarre criss-crosses the globe in search of extraordinary individuals living with some of the planet’s most mysterious, unusual and thought-provoking medical anomalies that have even puzzled the world’s best doctors and experts. From India to Indonesia, China to Ethiopia, the Dominican Republic, Hawaii, the United Kingdom, Texas and more, BODY BIZARRE uncovers the real human stories behind the headlines and brings to light what life is genuinely like for these remarkable people whose lives have been afflicted by physically and emotionally horrifying syndromes.” (Inquirer.net)
This does make it sound rather exploitative.
And then there’s the show’s title. My contact didn’t even tell me the title in her initial email. She admitted that the title was “challenging,” but insisted that it was the intention of the show to educate and to share inspirational stories, even if the title fed into sensationalism. She sent me a link to a segment, and I watched it. I was impressed at how they handled the woman’s story, so I decided to trust them with mine.
I’ve been wanting to get my message out to more people. One way to do that is via media exposure, and this opportunity had just dropped in my lap.
My face is different, but my body is not bizarre.
I understand that a show with a title and subject matter like “Body Bizarre” might attract voyeuristic viewers. As a concerned friend bluntly pointed out, it could be considered a “freak of the week” show, and he was worried that I might become an object for ridicule. I appreciate his concern. I know that doing a show like this is a risk, but the more I thought about it, the more I realized that it was a risk worth taking.
No one can control viewer motivations or reactions. However, if people want to point, laugh and make fun of me, I’m all over the internet via my web page and my Friending the Mirror webinar series, so they have plenty of opportunities. I’m not afraid to be on camera. In fact, I welcome it. That’s why I do webinars instead of podcasts- because I feel that the visual is just as important as the audio.
Then, a few weeks after I sent the email agreeing to appear, I saw a link to a blog from someone else who had been asked to do a segment for the show. Her blog was about why she said “no.” After reading her blog, I began to second-guess myself. Then, after more thought, I stood by my reasons to go ahead with it. I do not have the name of the blogger nor do I have the link, so I can only focus from memory on the points that stood out to me.
The blogger had been concerned about losing control of her message, since she would have no say over the copy for the voice-over narration or how the segment would be edited. Coming from a background of having worked in video production and editing, I am aware of how shows are put together and of the power of editing. That is out of my hands. But there are things I do have control over. I have control over what I say during the interview. I have control over how I behave and how I present myself. I have control over my attitude. I also helped select the sorts of activities we’ll be shooting, so it will be a fair representation of my life. We’ll be including my Icelandic horses, the making of a webinar, and live music. My husband Ian is going to appear on the show with me, demonstrating that people with a facial difference can find long term, loving relationships with “normal” looking people.
The blogger was also concerned about being the representative for her particular condition. She didn’t want to be responsible for how it was portrayed. Since I was born with a very rare form of tumor, the removal of which left my face half paralyzed, my case is fairly unique. I don’t have to worry about what other people with teratomas might think about how I represented them. Not that it would matter. Each person has a unique story, and I can only present my own.
I am hopeful that the exposure might garner interest in having me come speak to schools and groups about resilience and accepting differences. But I can’t count on that.
The best I can hope for is that by putting myself out there and being a role model for self-acceptance and facing the world with confidence, I can inspire and motivate someone who is less secure about their appearance to face their insecurities, go out into the world and live a happier and more productive life.
If I can help change even one life for the better without bringing significant negative attention on myself, it’ll have been worth it.
And besides, I’m kind of a ham. I wanted to do the show because I thought it might be fun.
Shooting takes place December 1st and 2nd (2015). Despite my confidence and resolve to do this to the best of my ability and my determination to have a good time, I am still holding my breath, hoping for a good result.
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