RACHEL MARTIN, HOST:
This is how Lizzie Velasquez remembers kindergarten while growing up in Austin, Texas.
(SOUNDBITE OF DOCUMENTARY, "A BRAVE HEART: THE LIZZIE VELASQUEZ STORY")
LIZZIE VELASQUEZ: All the classes would sit here and line up. And I would always hide behind these things. And I would sit here and hide and then other kids would stare at me or just not be nice.
MARTIN: Now 26 years old, Lizzie Velasquez has a rare genetic disorder that prevents her from gaining weight and is horribly disfiguring. Because of this, Lizzie has endured almost unimaginable bullying throughout her life. But instead of letting it break her, Velasquez turned hate on its head and became an anti-bullying activist. She's the subject of a new documentary. It's directed by Sarah Hirsh Bordo, called "A Brave Heart: The Lizzie Velasquez Story." Lizzie joins us now from our studios in New York. Welcome to the program.
VELASQUEZ: Hi, thanks for having me.
MARTIN: We learn pretty early on in the film that you get a lot of your bravery and your spirit from your parents. They're pretty amazing folks.
VELASQUEZ: Thank you.
MARTIN: Your dad was a teacher in the same elementary school where you were a student. And at the beginning of every school year, he would get up in front of your class and explain your condition.
VELASQUEZ: Right.
MARTIN: Did that help?
VELASQUEZ: It did. It helped with the kids that were in my class. We didn't really start doing that until I was about second or third grade, so where I understood what was going on and really was so desperate to just figure out a way to introduce me to people and explain what was going on because we realized once we let them know that I was just like them except a little bit smaller, it made things a whole lot easier for the kids that I was around on a regular basis in class. But, of course, if we were walking down the hallway or in the cafeteria or wherever it may be where people didn't hear that introduction, it was always very hard.
MARTIN: As you move through the grades, it appeared in the documentary things were pretty good for you. You seemed like a really well-adjusted kid. You had great teachers who gave you all kinds of support. You even went out for cheerleading...
VELASQUEZ: (Laughter).
MARTIN: ...And made the team.
VELASQUEZ: I did. I had incredible friends who I went to church with and I was able to become really good friends with them. And then we all went to the same high school. And to have them around me was so, so nice. We - I still am really close with them. There's a group of five girls, and they've been supportive of me since day one and have been so incredible.
MARTIN: When you were in high school, like a lot of kids, you started to develop an online life. And one day, you discovered a vicious comment that had been posted about you on YouTube. Can you describe what it said and what happened after that?
VELASQUEZ: Yeah, I was 17 years old when I accidentally found it. I didn't know when I clicked on it that it would turn my entire life upside down. And I clicked on it and it was a video - an eight-second video - with no sound that someone posted of me and the title was "The World's Ugliest Woman." And it had over 4 million views and thousands of comments just ranging from, the world would be a better place if you weren't in it, here are some tips to help you go away. So it was tough.
MARTIN: You decided to then start your own YouTube channel.
VELASQUEZ: I did. I - after I found the bad video, I was just so determined to not let those people become my truth and my reality. And the only way that I could figure out to have control over that and to decide what people see and - I don't know, I just looked at it as giving people a little peak in a window of my daily life and just to show them I am human.
MARTIN: Since then, you have become a really big deal, Lizzie (laughter). You gave a TEDx Talk that generated all kinds of buzz. You've spoken to an audience of 10,000 people in Mexico City that's depicted in the documentary. Are you still amazed that you have what is a very rare disease, yet your experience has this universal quality to it that resonates with so many people?
VELASQUEZ: I think the first time I did my very first speech ever when I was a sophomore or junior in high school, the assistant principal at the time had asked me to tell my story and I thought she was insane. And she told me to think about it, and I did. And my friends were in the front row cheering me on and my parents were there. And that was the first time that I felt so comfortable in my own skin. And I knew this is what my purpose is. I have to do whatever I can to continue doing this because I quickly realized even though some people don't have the syndrome that I do, they can still relate to something that I've gone through. And because of that, I continue to do motivational speaking and I still see the exact same theme that I saw when I first started.
MARTIN: In the film, you go to Capitol Hill and you're lobbying for a bill that would make schools more accountable to crack down on bullying, cyberbullying in particular. Is that something that you're still working on, to try to get the votes, to pass something like that?
VELASQUEZ: Yeah, I definitely still am. And I always tell people that this isn't something I just did for the film. This is something that I'm very, very passionate about. And transitioning from the beginning of this year, from being a motivational speaker to now being an activist, fully embracing that is what I've also been really focusing on. And I told them in each meeting, get used to seeing me 'cause I will not go away until this bill is put to the floor.
MARTIN: The film is called "A Brave Heart: The Lizzie Velasquez Story." It has just opened. Lizzie, thank you so much for talking with us.
VELASQUEZ: Oh, thank you. Thanks for your time. Transcript provided by NPR, Copyright NPR.