Lizzie Velasquez talks about bullying and documentary on her life

Lizzie Velasquez was searching YouTube for a Taylor Swift song when she found it -- the video that changed her life.

“The World’s Ugliest Woman,” it was called. Velasquez, then 17, took the click bait. But when the video began to play, she was shocked to find she was its star. The whole thing was only eight seconds long and showed a picture of her from when she’d appeared on a TV show a few years prior. The clip had been viewed more than 4 million times.

Velasquez was no stranger to bullying. She was born with two rare conditions: Marfan syndrome, a connective tissue disorder, and lipodystrophy, which makes it difficult to gain weight. She’s blind in one eye and has never weighed more than 64 pounds. Because of the way she looked, her schoolmates often taunted her -- but the YouTube video? That was a new level of cruelty.

At first, she shut down. She holed up in her room and cried. She refused to talk to her parents. But after wallowing for a while, she decided she needed an outlet for her feelings. So she returned to the scene of the crime: YouTube.

She started posting video blogs, sharing her feelings with the Internet. Sometimes the clips were serious, filled with inspirational messages about how “it gets better.” But there was also lighter fare: Velasquez giving a tutorial on how to style short hair or talking about how much she loved the reality show “Big Brother.”

Before long, she started amassing fans -- to date, she has more than 363,000 subscribers to her YouTube channel. One of them was Sara Bordo, who was putting together a TedX women’s event and invited Velasquez to speak at it.

She did, and her 2013 talk, “How Do You Define Yourself?,” went viral and has now been seen by more than 8 million viewers. So Bordo asked Velasquez if she’d be open to being the subject of a documentary, and soon the filmmaker began trailing the new motivational speaker on the road and to Washington, D.C., where Velasquez lobbied for the Safe Schools Improvement Act.

“A Brave Heart: The Lizzie Velasquez Story” will be released by Cinedigm this fall, but it’s also screening at the Newport Beach Film Festival on Tuesday night. The film premiered to warm reviews last month at the South by Southwest Film Festival in Austin, Texas, which Velasquez, now 26, calls home. We spoke there.

How did Sara Bordo propose the documentary to you?

A few weeks after the TED talk, she called me up and said, “I have this crazy idea to do a documentary. Don’t answer me now. Just think about it.” And I said, “My answer is going to be yes. Of course, I’m going to do it.” I’ve been approached to do this so many times. It just wasn’t the right timing or wasn’t the right people. She told me, “I’ve never done this before. I’ve never made a movie before. I don’t know what I’m doing -- but are you in?” And I said, “Yes, 100%.” We just clicked from the moment we met. She got me and what I wanted to do.

Did she tell you why she thought you were an interesting subject?

She said she wanted to put me on a bigger stage to share my story, and when she said that, I said I completely appreciated it, but I didn’t want it to just be about me. We both didn’t want it to be a longer version of my TED talk. And then the question was, how do we do that? What do we show? And over the process of filming last summer, it just became more and more apparent that everything I was talking about were so many issues that people can relate to of any age, no matter what you’ve gone through.

In the film, we watch a doctor finally give you a diagnosis of your condition after years of it being a mystery. Was it nerve-racking to have the cameras there for that moment?

That was pretty heavy. I had been dreading that appointment just because you just don’t ever think you’ll get an answer, and then you get a phone call and they’re like, “OK, we have an answer, come get it.” Your whole world is going to change. But being in that meeting, I think I just felt more empowered than scared. Because I was getting the answers.

Why did it take them so long to diagnose?

They’d been doing different studies with my blood and stuff. All of that stuff I just don’t understand. It’s all just really big words. I thought, you’re just not going to get it, because that’s what I was used to for so many years. They do a test and they can’t figure it out. They said they were going to try sequencing all my genes and finding the one that’s not right. I thought, “Well, good luck.”

How are you doing now?

That appointment was, like, three months ago. About a month and a half ago, we went to see a cardiologist and got all the scans they wanted, and so far, so good. We’re just monitoring everything, and I’m just feeling really good that we know what to look for and there’s a plan in place.

We see a lot of your fans approach you in the film. Why do you think so many people relate to you?

Honestly, insecurities. No matter what age you are, I think if you’re a girl or a boy, you’re insecure. And it’s not easy. I never in a million years thought that I would be seeing my name up on a big screen. And even seeing that, I’m not like, “Oh, I’m so great and confident.” Walking down the street here, I’m like, “Are people staring at my legs and looking at my ankles?” No matter what size you are or if you have a syndrome or you don’t, it’s just so common.

You kind of stumbled into being a motivational speaker. Do you think this is the career you want to stick with?

I am figuring out, what do I want to do? Do I want to keep doing this? And my answer, of course, is yes. But how do I want to keep doing it? And every year, at the end of every year I always figure out a new plan for my speaking. I always want to change it up, because I talk about the same things a lot and I want to do something new, something fresh. I always have to make sure to touch on the same subjects — bullying, insecurity. But how I talk about it has changed since my TED talk.

Did you work with a speech coach?

I taught myself how to be a speaker on Google. I just Googled “how to be a motivational speaker.” I needed an audience to practice, so I started a professional email that just had my name. And I emailed all of these random people and said, “If you ever need a speaker, I’m your girl.” And that’s how I got started, just speaking at random places. And I learned how to speak without a notecard, how to not look down, where I walk around.

Wow. Were you trying to emulate anyone?

Bill Rancic. He was the person that I studied to be a motivational speaker for so many years. I looked up his website, I looked up his style -- he was my person. I didn’t know who he was or what he did. But he was cute -- and he still is cute -- so it didn’t hurt that he was the person I was trying to emulate. I said in some interviews that I really admired him, and his people reached out and we got to have lunch with him.

Did he give you advice?

Yes. He was the nicest guy in the world. I was so distracted by thinking, “What is my life?” But he was so kind, and he was giving me advice on how to take care of myself, and he said, “Once you’re out there, you just need to stay humble and stay grounded.”

You went to Capitol Hill to talk to lawmakers about the Safe Schools Improvement Act, which would require schools to create safeguards against bullying and harassment. But how do you prevent bullying in an age where it happens not just at school but online, too?

People think cyberbullying will never end, so why try to fix it? Which I completely understand. I will be the first to tell you that it’s not going to end. But if you start making the change and start making the steps, over time change will happen. You have to make the effort to make the change instead of saying, “I’ll sweep it under the rug and won’t talk about it unless someone dies and it’s a big news headline.” I think right now, our biggest issue is just awareness. I think bringing it to the table and saying, “Hey, this is what we’re doing. Let’s come together.” One of the things we noticed in every single meeting we had was “Oh, we didn’t really know about this. Of course we’ll sign on.” And maybe they truly don’t know about it. They do so many different things and there’s so many different bills. But at the same time, it’s like, “Come on, I know you’re dealing with this at home or you know someone who’s dealing with this.”

What do you think is the best way to get through to bullies?

Honesty and vulnerability. I spoke to an elementary school and I had seen one of the girls crying in the audience during my speech. She raised her hand and she was crying and she said, “I just want to say that whenever you guys make fun of me about my ears, it really hurts my feelings.” And I almost broke down seeing this girl. I just wanted to hug her. And the teacher looked at me — she didn’t know what to say. And this one boy who you could tell was the troublemaker in the class looked at her and put his arm around her and said, “I didn’t know that us making fun of you hurt your feelings. We’ll stop doing it. Right, guys?” And the whole class started apologizing to her. And all she had to do was say they were hurting her feelings. And she was brave enough to say it. And that moment has always, always stuck with me.

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