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Profiles in courage

They called her the “Ugliest Woman in the World.” Now, Lizzie Velásquez is fighting back

By Brigit Katz on March 20, 2015

Nine years ago, Lizzie Velásquez was browsing through music videos on YouTube when she found a video titled “The Ugliest Woman in the World.” She clicked on it, somewhat absent-mindedly. What she saw was devastating, because what she saw was herself.

The video was an eight-second clip of an interview that Velásquez had given to a local news station. It had four million views, and the comments were brutal. “Why didn’t her parents just abort her?” “Eww, what a monster.” “Kill it with fire.”

Velásquez suffers from a rare congenital disease that prevents her from gaining any body fat. At 26-years-old, she has never weighed more than 64 pounds. She is blind in one eye and has undergone more medical procedures than she can count on two hands. Her heart has to be carefully monitored to prevent aortic rupture, a relatively new health concern that doctors brought to Velásquez’s attention while she was filming her upcoming documentary, A Brave Heart: The Lizzie Velasquez Story.

Though the film depicts Velásquez in moments of intense vulnerability, it is ultimately a story of resilience. A Brave Heart, which was directed by Sara Hirsh Bordo and produced by WomenRising, follows Velásquez’s struggles with relentless bullying and her subsequent rise as an Internet personality and motivational speaker. Velásquez responded to the “Ugliest Woman in the World” video by starting her own YouTube channel, where she uploads vlogs with resolutely cheery titles like “Bad Day Cure” and “BECAUSE I’M HAPPY!!”  In 2013, Velásquez gave a Tedx talk called “How Do You Define Yourself?”, during which she spoke about creating a positive self-image in the face of external negativities. The video of her talk has over 7 million hits on YouTube.

At the center of A Brave Heart are Velásquez’s efforts to lobby for the Safe Schools Improvement Act. If passed, the legislation will become the country’s first federal anti-bullying law. Women in the World spoke with Velásquez about her journey to Capitol Hill, Internet trolls, and choosing to be happy.

From A Brave Heart: The Lizzie Velasquez Story/Women Rising
From A Brave Heart: The Lizzie Velasquez Story/Women Rising

Women in the World: You had a horrendous experience with YouTube, and I imagine most people would have responded to a situation like that by staying as far away from the platform as possible. But you decided to launch your own YouTube channel. Why?

Lizzie Velásquez: I’m the type of person that likes to have control of situations. I thought that starting my own channel, posting my own vlogs and sharing my story myself would be—not like a cure or anything—but it would be a way for me to say, “You know what, I’m not going to let this hold me back. Here’s the real story and here’s who I really am.”

WITW: The “Ugliest Woman in the World” video was so unnecessary and so cruel. But you don’t shy away from talking about it. How and why did you come to embrace such a difficult episode in your life?

LV: Putting my life out there publicly [through my YouTube channel], I knew that I was eventually going to have to talk about the video. In a way, it’s been therapy for me, because I’m not shying away from it. I’m owning the situation and what happened. I’m talking about it because I know I’m doing something to make it better, and hopefully prevent something like this from ever happening to anyone else.

WITW: You seem to bring out both the nastiest and kindest sides of the Internet. I know you read the comments on your videos: do you have any tips for shrugging off trolls?

LV: I’ve just always had the mindset that with the good comes the bad, so I just take it with a grain of salt. At the same time, I’m a human being. When you read something really bad about yourself, sometimes it doesn’t feel so great and it bothers you. That of course happens to me. But I have a routine: whenever I read something bad, I automatically go find something positive, no matter what it is. I just get the negativity out of my mind.

WITW: Through your channel, you have been publicizing many aspects of your life for several years now. You are a frequent public speaker, and you have written three books. So why a documentary? What are you hoping the film will add to the knowledge that viewers and fans already have of you?

LV: I had the fear of, “How can we make this [be more than] a longer version of my TED talk?” I always tell people, “I am who I am because of my family and the people I was raised around.” In this movie, you get to see that for the first time. You get to see me being vulnerable and crying, [which is] something that I’ve always been afraid to show. Sharing these [emotions] on screen is something I’ve never, ever done before. I hope that people will watch the film and think that’s it’s OK to have a bad day. It’s OK to cry. It’s something that you actually need. You need to have days where you feel sorry for yourself and just let out the tears.

WITW: I was struck by one scene in the film. You are talking to your doctor about your syndrome, which he refers to as a genetic “mutation.” You ask him to call it your “difference.” In your eyes, what is the distinction?

LV: “Mutation”: When you hear that word, you think there’s something wrong. I’m at a point where I need to accept what I have. Saying that I have a mutation, in my mind, isn’t something that’s good. But if I say that it’s my difference, that’s something that I understand and I can totally embrace that.

WITW: As someone who has endured bullying—for a very long time and in a very public away—do you think you are acutely sensitive to the subtle implications of various words?

LV: Words can hurt more than physically punching or hitting someone. I have become very aware of it.

WITW: In an effort to combat bullying, you went to Capitol Hill and spoke to several representatives about the Safe Schools Improvement Act. They all seemed supportive, but when it came time for the briefing on the legislation, only one elected official turned up. Were you disappointed?

LV: I was surprised and honestly a little bit annoyed. Going to Capitol Hill was one of the most intimidating things I’ve ever done in my entire life. You’re staring at the people who really can make the change—all they have to do is sign their name. Yes, they were all so supportive and very sweet, but having only one representative there [at the briefing]… I was just like, “Seriously? Come on!”

I just want them to get it. I want them to know that we have to stop just talking about [bullying] and start doing something about it. If it’s something as easy as signing your name and [as a result] making a difference for every child in every single classroom—to me it’s a no-brainer. I want [bullying] to be an issue that people are talking about  because they are currently helping make a change, and not just saying, “What a sad story. Something should have been done.” I want them to change the conversation and say, “What an unfortunate story. Here’s what we’re doing to help change that for someone else.”

WITW: During your now-famous TED talk, you spoke about the importance of choosing to be happy about what you do have, rather than bemoaning what you don’t. What are you feeling happy about at the moment?

LV: I’ve had many days where things just hit me in waves. I never in a million years thought I would be about to premiere my movie. I never thought that so many people would get to see my loved ones, or get to really know my life. I’m just so humbled: humbled by the amazing team that rallied around me and humbled by the support that has been pouring in from strangers who have never actually met me in person, but who feel like they’re a part of my story.

WITW: Talking about support, A Brave Heart was funded through Kickstarter, and you pretty quickly exceeded your goal by about $35,000. Were you expecting that at all?

LV: I knew we would reach our goal, but I did not think we would reach it a week early. Again, I just felt so blessed. People were donating their hard earned money to this movie, to this dream that we shared. For that, I was extremely grateful.



This interview has been edited and condensed.