We had the good fortune of connecting with Colette Pfeiffer and we’ve shared our conversation below.
Hi Colette, what’s something about your industry that outsiders are probably unaware of?
The advocacy industry is an extremely content rich environment today. Everywhere you look is an activist for something, and that’s a wonderful thing. I think something people might not realize from the outside looking in is the multifaceted pressures on advocates that fall in a grey area, or find themselves not being someone else’s idea of “enough” of their concept of a suitable advocate. Who gets to decide who is “disfigured enough” or “disabled enough” or “been through enough hardship” to be an advocate? There are so many people out there, who like me, land in an under-represented category. I struggled with this so much before launching. I wondered who would even want to hear from me. “Where do I fit in? I don’t have an immediately visible disability, my disfigurement can sometimes be concealed, but I am missing a body part, I can’t sit straight in a chair, live with invisible illness, have had three internal reconstructions, two of which failed, and still live much of my life captive to the effects of my disfigurement.” I wanted to help people like me, but there isn’t really a place for that, which is why I made one. It’s a misconception that doors always open for advocates, but I hear no a lot. This industry can sometimes still be very face level, meaning “What do you see right away?” It’s still a gradient system, like anything else, and those with silent struggles get too often pushed to the back. So they think there aren’t others like them. They struggle alone. They compare themselves and put themselves through undue self guilt. But this isn’t a race. Equality advocate Ash Beckham once said “There is no harder, there is only hard.” I couldn’t agree more. So I’m here for it. All the hard. I’ll return to my earlier question, “Who gets to decide who is an advocate?” When I started receiving messages from other SCT survivors who had never seen another soul like themselves, or expectant mothers who had just found out their little one was in for a long haul battle for their life, I got an onslaught of “Thank you for being here.” Or “I didn’t think I’d have anyone to talk to who would understand.” And in those moments I thought “Who decides if I get to be an advocate? I decide.” I decided I wanted to help people. I decided I wanted to make others feel less alone. I decided I wanted this position, for any and all personal scrutiny it required. I found I had a voice more people needed to hear than I ever could have imagined, and I will not stop. I hope no one does. We are all in this together, I’m just adding a little bit of glue to hold us all in place.
Can you open up a bit about your work and career? We’re big fans and we’d love for our community to learn more about your work.
In the fall of 2018, I launched Wicked Flaws, an empowerment platform based in my experiences growing up with a disfigurement. I was born with a rare congenital birth defect called a Sacrococcygeal Teratoma, or SCT. The teratoma grows at the base of the spine, and those who survive past birth experience a myriad of complications, mine of which included internal pelvic trauma and a missing right buttock. SCT’s occur in about one in every 40,000 births, so you can imagine I grew up feeling like I would never meet anyone else like me. As a child of the 90’s, acceptance and diversity representation in media were different than they are now, so I was left to figure adolescence out on my own, and that’s a little more complicated when you’re going through this life with a taunt-prompting scar. It was a sometimes bumpy ride, but in my young adulthood, while I had come to be comfortable in my own skin, I started to feel the misrepresentation even stronger. Where did I fit? I wasn’t like anyone I know or had seen. I wanted to make a place to celebrate our flaws, not learn to “cope with” or hide them. I had learned to own my missing cheek and adaptive way of life, but I wished I had felt that way sooner. I wanted to help others find the absolute freedom in true, unadulterated acceptance and self love. I loved the dual meaning of the word “wicked,” meaning both “bad, marred, intended to harm” and “exceedingly good or excellent.” What if we too, could be both? What if that which aims to harm us, has in turn, given us incredible power? I wanted to share that. I had to share that. In the winter, I have the privilege of part time teaching adaptive skiing at the United States Adaptive Recreation Center, working with athletes with disabilities, and specializing in students who are deaf and blind. In my world of adaptive sports, I work with students who have cognitive and physical disabilities, such as veterans with traumatic brain injuries. I have met so many people who embody the spirit of Wicked Flaws, and when times get stressful on the slope, and limitations bring frustration, I level with my students and share my experience. I let them know I understand what it’s like to be imprisoned by your body, or the way you look, or how you are different. I too ski with adaptive restrictions; like my left turns which aren’t very stable because I have decreased motor control and nerve activity in my right leg where the tumor was growing. I use my flaws to make humorous self deprecating jokes to lighten the scene… “I can fit on the lift with you guys, I only need room for one butt cheek!” is a personal favorite. Our flaws give us all different gifts, Wicked Flaws is about finding and harnessing your own. Through Wicked Flaws I’ve met so many people with empowering tales. I guest write for body positive sites, model swimwear, and even have a bathing suit named after me, designed by Miga Swimwear, which was featured in Teen Vogue. All I have ever wanted in sharing my story and that of others is to create a feeling of community and togetherness. I think the greatest takeaway I would want anyone who sees my site or reads my work to feel is that what makes you different makes you extraordinary. I used to feel like 1 in 40,000 were the most unlucky and unfair odds. But now, I see that I am where I am meant to be, honestly sharing my “defect” it for its struggles and triumphs, and reminding people we are all the 1 in 40,000. We all have something that makes us flawed, but it’s wonderful, no….wicked.
Any great local spots you’d like to shoutout?
One of my favorite spots in Los Angeles has been an ever constant place of relaxation and a beacon in my time in this city, Griffith Park and the Griffith Park Observatory. Just a few blocks from my front door, walking and hiking paths at Griffith are a respite from the hustle and bustle of city life, something much needed for an Indiana girl turned city dweller. At more than five times the size of New York City’s Central Park, I’d say you’d be hard pressed to find part of Griffith Park you’ve never explored, so it’s always offering a fresh take on an old adventure. Sitting atop the San Gabriel foothills that carve through the northern border of Hollywood, the Griffith Observatory is historic, educational, beautiful, and above all, FREE (per contractual accordance to its benefactor, Griffith Griffith’s will). Keeping educational facilities free to the public is, I believe, the cornerstone of civilization. Also free of admittance, is its original 1935 Zeiss Telescope, the most viewed telescope in the world, gifted to the observatory contingent that it would be forever accessible to the people and never employ charged admittance. When I first moved to LA, I would go there alone on Friday nights for something to do. I’d spend hours poring over the artifacts and dioramas in the museum, (most of the observatory serves as a space and Earth science museum). I’d never fail to see something I hadn’t caught before. I have long harbored a love of space exploration, early rockets, and our place in the cosmos; and getting to share these pieces of history when friends visit is a great joy to me. I think the observatory and the history therein represents the spirit of Californians; tenacious dreamers and tireless workers, all in their own way reaching for the stars.
Who else deserves some credit and recognition?
If there is any one party most responsible for where I am today, it is without a doubt the support of my parents. They have been my lifeline from day one (and before, honestly); there to dry tears, console fears, and above all else remind me that our shortcomings do not define us, our victories do. But aside from the parental support many people with differences have, a couple people do come to mind. After seeing doctors all over the country, and having multiple unprecedented reconstructive failures and physicians who couldn’t help me despite honorable efforts, I am forever grateful to Dr. Amy Rosenman and her surgical team at UCLA, including Dr. Christopher Tarnay, who without the whole dissertation, have given me a more functioning body and subsequently a new lease on life. They say a healthy person has a million wishes, a sick person has one. That one is wellness, and I’m exorbitantly indebted to Dr. Rosenman for her unrelenting and continued work to get me there. Also notable in my journey and worthy of a shoutout is Lisa Elia; a Los Angeles media coach, whom I met with long before I launched Wicked Flaws. She helped me to see that my platform was needed, wanted, and pertinent now more than ever. She showed me the parts of me that could help others, and brought to light the things I perhaps needed to work on or see differently. Through her I saw a change in myself, helping to abolish any lingering bitterness or self inflicted comparison. Lisa has a beautiful way of bringing out the best in you, and never being accusatory when she gives guidance.