No Staring, Please

By: Melissa Schult
Photo by Tiffany Trinidad

Standing three-feet-nine-inches tall, 26-year old Vanessa Vanelli lives in a world not designed for her. Usually mistaken for being a little person, she was born without femur bones, the result of a leg deformity called femoral hypoplasia.

When I first met with Vanelli for coffee, the only empty seats were bar stools. I awkwardly looked around for an empty chair or couch, but Vanelli, without hesitation, pointed out the tall chairs and led the way. What I thought would require considerable effort, Vanelli accomplished with ease, manoeuvring onto the stool, and casually sipping her latté.

Raised by her parents, Rose and Ray Vanelli, to try everything at least once, she has developed a tenacious and persevering attitude.

Rose, Vanelli’s mother, used fertility drugs in an effort to get pregnant for a second time. During her first trimester, however, she learned she was diabetic and had to start using insulin, which many doctors linked to being the cause of her daughter’s femoral hypoplasia. For the remainder of her pregnancy, doctors closely examined Rose and the baby.

Throughout her term, Rose and Ray were told every imaginable detail: the size of the baby’s head, how much she weighed, and how long she was. However, when Vanelli was born, it was obvious that her legs weren’t develop properly. Of all the complications the couple were notified of, how could something so major be left out?

“We had been to the hospital so many times and were so excited . . . it was a real shock,” Rose says in the interview. “You’re dealing with the shock that you can’t believe that this has happened, that she was born like that.” With no explanation from doctors other than “it’s environmental,” Vanelli’s parents were left to raise a disabled child on their own.

As if the shock of their daughter having femoral hypoplasia wasn’t enough, her anxious parents were then informed she was also born with a cleft palate and Pierre Robin Syndrome. The latter meant she had a smaller than normal jaw and tongue. After being hospitalized for three months, and struggling to nourish Vanelli via feeding tube, Rose and Ray finally got to take their new baby home.

As she grew up, people seemed to pay more attention to Vanelli’s small stature. As her body developed, it became more prominent that she wasn’t on the same physical level as her peers.

Vanelli says she never experienced bullying or name calling, but staring was something else.

“It makes me feel like a monster,” Vanelli says. “I think the worst is when there are two or more people and one person sees me and taps the other person so that they can stare, too. It makes me crazy.”

Her reaction to such blatant gawking is dependent upon her mood, though most days she says she’s able to just ignore it. Her mother has a slightly different approach to dealing with people who stare at her daughter. Rose will march right up to the offender, put her face mere centimetres from theirs and boldly return a stare. Vanelli and her father frown upon Rose’s antagonistic method, but she does it regardless.

“I want to make them feel what it’s like to have that stare right in their face,” Rose says, adding she has no problem with setting obnoxious people straight, as there is no reason why her daughter shouldn’t be able to live in this world.

Vanelli has noticed a difference in the way people approach her, which she says may be due to TLC’s airing of The Little Couple and Little People Big World. Vanelli thinks these shows have created an outlet for people to express their curiosity and avoid harsh judgments.

“It’s better that they are open to asking questions instead of just staring and making fun of me,” she explains. “It’s nice that people can open their eyes instead of being rude.”

Being compared to others may be a problem for Vanelli on other levels, too. “It is so frustrating that I can’t wear heels because of my legs being different lengths,” she says. “I wish I could just finish an outfit with a nice pair of heels when I’m going out with friends.”

Vanelli has recently faced the challenge of finding a job, as well. She receives return calls from potential employers, but experiences a problem after the first face-to-face meeting. “Obviously no one has come out and said it’s because of the way I look, but I can tell by the way they look at me when I walk in,” Vanelli explains.

After not being offered any jobs, Vanelli tells me she has decided to take a break from the hunt and plans to remain working for her father. Vanelli aspires to eventually run the company.

In the summer of 2011, a long-time friend of Vanelli, Lisa Tatone, brought up the idea of participating in the Ride for Heart, Toronto’s largest bike fundraiser. Having always longed for the freedom of riding a bike, she jumped at the opportunity.

As a person with femoral hypoplasia, Vanelli doesn’t have knees, making it physically impossible for her to pedal a standard bike. After some research – and the pricey purchase of a bike that Vanelli would propel with her hands – she says, “[Riding the bike] made me feel so free.” For her, the next step was to begin training for the charity race.

Although always trying to be supportive, Vanelli’s parents feared for their daughter’s well-being. With only a week left until the race, Vanelli did not have much opportunity to train and her family suggested she back out.

Despite their doubt, Vanelli remained determined to experience something she had never done before. “If you want to support me, you can wait at the finish line,” she said to her family.

Twenty-five kilometres and two-and-a-half-hours later, a sore and tired, but very proud Vanelli met her family at the finish line. “It felt amazing to do the 25-kilometres for someone who didn’t get to properly train for it,” she said. “I had no idea I had it in me.”

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