Fear and Loathing at SXSW: ‘Ugliest woman’ fights bullying

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It’s an old story. The King of Spain buys a hunchbacked dwarf to entertain his daughter. The Princess laughs at the dwarf’s antics, making him think she loves him. Later on, looking for her through the palace, the dwarf spies a grotesque figure that follows him wherever he goes, mirroring each of his movements. When the wretched dwarf finally realizes what a mirror actually is and does, his heart breaks, killing him on the spot. “For the future, let those who come to play with me have no hearts,” the Princess declares. Though published in 1891, Oscar Wilde’s The Birthday of the Infanta might have predicted the advent of cyber bullying.

Lizzie Velazquez’s mirror was YouTube, where at age 17 she found a viral video entitled The Ugliest Woman in the World. What she saw in the 8-second video was her own reflection. “I was shocked, but it wasn’t until I started to read the comments that my stomach really sank,” she recollects. “I don’t even know why I clicked on it, but I did and that’s when I lost it. Calling me a monster or asking me why my parents didn’t abort me. ‘Kill it with fire. I wish you were dead. Just pick up a gun and end my life.’” Her heart surely broke. “I cried for many nights – as a teenager I thought my life was over,” she says. “I couldn’t bring myself to talk to anybody about it, I didn’t tell any of my friends, I was just so shocked that it had happened.”

But she did not die. That was in 2007. Last Saturday, a documentary about her called A Brave Heart: The Lizzie Velasquez Story was screened at South by Southwest. In the interim, she started her own YouTube channel that currently has over 300,000 subscribers, as well as a website. Additionally, the video of her 2013 TED Talk at the TEDxAustinWomen in Austin has been viewed more than 7 million times. “I’m not sure what it was about the TED Talk or what I said in it, but it changed everything,” Velazquez told USA Today. “I knew this is my purpose. This is what I’m meant to do for the rest of my life because I like to think that I’m not only telling my story, I’m telling everyone’s story.” She further told the Austin Chronicle that “it’s a movie with my face, but it’s not just me. It’s everyone.”

She does have a very particular story, however. Born with a rare genetic disorder that prevents her from gaining weight and storing body fat, Lizzie’s parents Rita and Lupe (note for non-Spanish speakers: her parents are not a lesbian couple; Lupe is short for Guapalupe, which is a unisex name in the Spanish language) were told by doctors she would never crawl, let alone walk. She can walk, alright – though her right foot fractures easily on account of an absence of fat on the sole. Moreover, her face and body have aged too rapidly, making Lizzie look very much older than she actually is – which might explain why FoxNews says she is 24 while the Washington Post says she is 26. Doctors believe she has a neonatal progeroid syndrome characterized by elderly appearance, rigid joints, and thin skin.

Now, if the people who teased her during her childhood in Texas had had the faintest trace of imagination – and bullies usually don’t – they would’ve nicknamed her Thin Lizzy. But that would actually have been a compliment, being nicknamed after the legendary Irish rock band. Instead she encountered the standard “pointing and staring, but it was just kind of like we dealt with it, and we just got used to it,” sister Marina told FoxNews. Nonetheless, “when I was a teenager I would look in the mirror and wish I could wash away my syndrome,” Lizzie said. “I hated it because it caused so much pain in my life. Being a 13-year-old girl who is constantly picked on is unbearable.”

Lizzie weighed 2lb 10oz (1.2kg) at birth. Twenty-four (or twenty-six) years later she is 5ft 2in and about 60lbs (27kg). Furthermore, she is blind in one eye and visually impaired in the other, tends to lack energy, has difficulty fighting off infections, and has endured numerous tests and surgeries. In spite, or rather because of this – and/or the other way around – she has become an inspiration for bullied kids everywhere. “Her experience of triumphing adversity and making it to the other side of a painful experience is universal,” A Brave Heart director Sara Hirsh Bordo told BBC News. “As soon as Lizzie became more open and honest — whether it was her TED Talk or her YouTube videos — it was clear that people were thirsty for a story where somebody stands up and says, ‘I’m not going to be a victim; I’m going to make a change.’”

“I don’t want people to feel sorry for me. At all,” Lizzie told the Austin Chronicle. “I want them to leave [the film] and feel empowered for themselves and, hopefully, for other people.” That was the case for fifth grade student Jennifer Guajardo. “I really liked it. I cried at one part, but most of the time I had to hold it in,” she told MyFoxAustin after viewing the film. And what’s next for Lizzie Velazquez? She has partnered with Tina Meier, the mother of a girl who committed suicide after being cyber bullied, to lobby for the first federal anti-bullying bill in Congress.

Related Read:

- She was mocked for ‘looking differente’. Now she fights bullying in SXSW documentary.

- Woman with rare disease debuts film at SXSW.

- Lizzie Velasquez: ‘Online bullies called me the world’s ugliest woman’

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