By Shirley Li
Updated September 25, 2015 at 03:13 PM EDT
Travis P Ball/Getty Images

As a teenager, Lizzie Velasquez stumbled upon a YouTube video that labeled her the “World’s Ugliest Woman.” Instead of turning away from the Internet afterward, she decided to create her own channel and to show the world her true self. Now 26, Velasquez is the subject of A Brave Heart, a documentary from first-time director Sara Hirsh Bordo that chronicles Velasquez’s life growing up with an undiagnosed (up until this year), rare syndrome that prevents her from gaining any weight.

But the documentary isn’t just a look back at Velasquez’s struggles to fit in; it’s a call to action, showing how she’s taken her cyberbullying experience in stride by giving a successful TED talk in 2013 and even lobbying for a federal anti-bullying bill in D.C. For the film, Velasquez allowed Bordo and the crew to follow her to her motivational speeches around the world as well as accompany her on her visits to her doctor. On top of that, Velasquez reached out to Justine Ezarik (iJustine to YouTubers), a fellow content creator and friend who served as an executive producer.

EW spoke with Velasquez and Ezarik about how the documentary came to be and what can be done about cyberbullying:

ENTERTAINMENT WEEKLY: How did the two of you end up working together?

JUSTINE EZARIK: I found Lizzie a few years ago on Instagram, and I forget the exact picture that she posted, but I saw one picture that was her, and I left a comment and then Lizzie commented back, like “Oh my gosh, I can’t believe you commented,” and then I wrote back, “Oh my gosh, I can’t believe you commented back!” So it was this whole crazy thing and then we started talking, and I went to Texas maybe a year later for a panel and I invited her to come. It was just exciting — we kind of bonded over the Internet and had very similar experiences with the Internet phenomenon, with making YouTube videos and dealing with haters and things like that.

LIZZIE VELASQUEZ: Yeah, that’s when we first met, and I instantly fell in love with her. [Laughs] And we became really good friends after that. Back in January last year, after my TED talk, Sara called and was like, “I had this crazy idea, I want to do a documentary on your life,” and I said yes. And of course Justine came to mind, and I wanted her to be a part of it. She agreed to be an executive producer, and here we are!

EZARIK: I was so honored, you know, like, “Are you sure you want me to be a part of this?” I’ve just been so inspired by everything that’s being done, it’s so impressive.

Justine, you mentioned bonding over the Internet. But you each had different introductions to it: Lizzie started making videos after seeing that “World’s Ugliest Woman” video, while Justine, you began vlogging early on when YouTube began to become a space for doing so. How has that affected your experience online? Is the Internet a positive or a negative space? It can work both ways.

EZARIK: I kind of feel like we both entered it with the same passion, with just wanting to tell who we are. When I started making videos, there weren’t people who were that into video games or doing tech-type things [on YouTube], and I was getting judged for that. So for me, I was trying to have that escape, like this is what I like, this is who I am, this is what I love to do. It’s sort of being yourself and having control and telling your own story is still the great thing about the Internet.

VELASQUEZ: It’s one of those things where at the end of the day, we all have the same end goal: We all just want to share our lives and what we do. And we all can be introduced to it in a very different way.

EZARIK: Yeah, without [YouTube] I would not have met Lizzie, I would not have met my closest friends. As terrible as the haters and all of that can be, you know, that’s just sort of a part of it, and it’s something I don’t think will ever entirely go away. But you don’t know what those people who are saying those things to you are going through as well. I’ve responded back to many of them to engage in the conversation and to understand why they say those terrible things, and a lot of the time the response is, “I didn’t think you would actually see that” or “Wow, I’m not actually even mad.” So a lot of the time people are just saying things and they’re not thinking that a real person is there. When I think about it like that, people don’t understand the impact people can have, and I think Lizzie did a great job of turning the negativity into something that can be turned into something positive for the world.

VELASQUEZ: Thank you for saying that! When I started my YouTube channel after finding the “World’s Ugliest Woman” video, I was just so desperate to have the control, to show people my life and who I am. I’ve tried to post comments back and it just doesn’t go anywhere. What I found while I was looking at Justine’s videos, which I just love so much, and seeing her comments, I would see people saying awful things and I would get defensive for you, Justine, even when I didn’t know you. I guess no matter who you are or what you post online, somebody always has something to say. And I think before you get on social media, you just have to be prepared. Or even on the Internet, you just need to know what comes from good and what comes from bad.

EZARIK: Yeah, and you know, as terrible as those things are, it’s interesting that you have the power to voice your opinion, whether it is good or bad. And I think sometimes you have to open discussions to larger things. Even in a lot of my videos, I might be talking about, like, a cheesecake, and somehow the comments are nothing about a cheesecake. [Laughs] They end up turning into being about politics! So it’s interesting to see how a lot of these things extend into other topics. Whether it’s good or bad, it opens up discussions.

For the documentary, were there moments that were particularly hard to film, Lizzie, or ones that particularly touched you while you were watching, Justine?

VELASQUEZ: Mine was the diagnosis [of the syndrome]. None of that was planned at all while we were filming. Sara and my mom sat me down after the doctor called, and Sara really gave me the opportunity to decide, “Do I want this to be a part of the film?” Like, how do you decide? This diagnosis is why it’s been hard for 25 years. I thought, once I got diagnosed, if I ever got diagnosed, I just wanted the fact to be there. I didn’t say anything the entire time they were talking to me, and they both thought I was really mad, but I wasn’t, I just didn’t know how to process it. And leading up to the point there, in the diagnosis, I was very anxious, very emotional. I didn’t know how I was going to handle it… I wasn’t prepared for it.

EZARIK: I think in the very very beginning, I was crying, because you already started feeling what Lizzie had to feel her entire life. Just seeing her go back to her school and talk about all the things she went through — the opening scene is so powerful. The whole movie is emotional. I mean, I cried the whole time.

The documentary also delves into Lizzie’s activism on Capitol Hill. How does it feel for both of you to see the film finished and finally released?

VELASQUEZ: It’s just very very unreal. I have been living and breathing this film for a long time, for most of the past two years. And for so long, this project was like our little baby, a little secret. So it was a lot of just living it, the world of making the film as fast as we could possibly get it. And the amount of people that we had to touch and support this film from the first day we launched our Kickstarter through this whole journey, it was historic. I just want to make everybody proud.

EZARIK: It’s just crazy to me, like so many people put in so much time and effort. And with Lizzie being just finally able to tell that story, because the thing about YouTube is you come across random videos of people and you immediately judge them, you know? But then, the stories behind all of those videos, just to tell the whole story, to tell the behind the scenes… [the documentary] accomplished all of these goals. I think it’ll save a lot of lives… I don’t understand why people can’t just be nice. Sometimes it’s difficult for people to do that, but I don’t know, I just want people to be nice.

VELASQUEZ: I think that bullying and cyberbullying, unfortunately, are just two things that will never go away, no matter what. And on one hand, that can really just be a reminder that we in a way have a job to do. Whenever we post something online, we have a way of controlling what we post. I think that will hopefully catch on.

A Brave Heart: The Lizzie Velasquez Story is available on demand Sept. 25.

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