Naperville woman works for full acceptance of disabled

Plenty of people don't quite know how to deal with Nicole Minassian.

Some talk to her extra loud or in a baby voice. Others bypass her altogether and address her mother, talking about Nicole as if she weren't there.

Having a physical disability means the lively, charming 20-year-old Naperville resident and student at the University of Notre Dame sometimes can feel left out of social gatherings, what with the difficulties of trying to maneuver her mobility scooter around crowds or dancing couples.

Nicole's exact diagnosis has always been unclear, but the belief is she suffers from hypomyelination, a genetic disorder similar to muscular dystrophy. The disorder affects her nerves, presenting challenges with fine motor skills, coordination and balance.

But it hasn't slowed Nicole's passion for helping others with disabilities, and pushing for greater acceptance and accessibility for them.

"People understand more that (people with disabilities) are actually people and you can't make fun of us, and that different is good," she said. "But I think there still should be more equality, because it's one thing to say someone isn't weird, and another thing to accept them as a true part of society."

Nicole's passion so impressed judges at the Miss Amazing pageant in Los Angeles this summer that she earned the national title in the teen category. The event is open to girls with intellectual and physical disabilities.

"Nicole just shined. She had the most amazing smile and joy in her eyes," said judge Mayra Fornos, a California attorney who specializes in representing clients with disabilities. "She connected with the rest of the girls in a very positive way, and a very inclusive way. She was very confident in her skin and just made an impression on everybody."

Nicole, an anthropology major, planned on going into genetic disease research until her experience at Miss Amazing. Now she's considering a career in disability advocacy.

No matter what she chooses, she's committed to pushing for full accessibility and access to opportunities.

Nicole stumbled onto the Miss Amazing website earlier this year while looking to do some volunteer photography. She decided to give it a shot and earned the teen title at the state pageant in late April.

Her mother, Sharon, father, Chris, and 15-year-old brother, Hunter, traveled with her to nationals, which took place in Los Angeles from July 24 to 28, in conjunction with the Special Olympics World Games.

Nicole's energetic personality and contagious laugh draw people to her, said Jessi Peters, state director for Illinois Miss Amazing.

"I feel like her personality outshines her disability. You fall in love with Nicole when you get to spend time with her."

Miss Amazing is not a pageant in the traditional sense. It's all about shining the spotlight on all the young women have to offer - not their dresses or appearance - and building their confidence through the process, Peters said. "Our event is unique because we do not judge the girls against each other," she said.

Participants get pampered with hair and makeup, but don't have to wear formal dresses unless they want to. Nicole's choice? A mismatched, wacky outfit with a "Little Mermaid" theme.

"I looked completely nuts, but it was part of the speech," which advocated for inclusiveness for the disabled, she said. "I like to do serious topics with random humor."

Because of her disability, Nicole can walk short distances only, and somewhat unsteadily. "Usually I have to hold onto something. The wall is my best friend," she explained.

She's very visual - she's the photographer for the Notre Dame ballroom dance club - but finds it impossible to walk around in the dark.

She mostly gets around on a pair of scooters, a three-wheeler she named Waldo and a four-wheeled one named Humphrey, best for handling northern Indiana's lake-effect snows.

Notre Dame provides her with aides - both paid and volunteers - who help with tasks like showering and getting ready in the morning and at night. The school even made special accommodations to her dorm, with wireless entry, a shower rail, a removable shower head and more, she said.

That Nicole earned her way into one of the country's top universities is no surprise to those who know her back home.

"She's articulate, she's intelligent, she's motivated. She's very goal-oriented," said Lauren Erickson, department chair for student services at Waubonsie Valley High School, from which Nicole graduated with a 4.6 GPA on a 4.0 scale. "Obviously she's overcome a lot to get there, too."

Nicole challenged herself in high school by taking loads of Advanced Placement courses and joining the speech team.

"She was a great role model for others," Erickson said. "And she's a great role model for anybody with a disability. She'll go far. She'll do really great things."

Nicole usually doesn't think too much about her disability, but there are times when she feels its impact, like when she wonders if people are being nice to her just to be polite. Once in a while, the whole thing just makes her mad.

"It's sometimes hard to feel like I fit in, because I do stand out," she said. "As much as I don't like to think about it as, like, 'a thing,' it is something you can't always ignore all the time. As much as fun I think I am, there's still people who will be uncomfortable around you."

Still, she's well aware that there are others who deal with that and more, as she found out by attending summer camp for kids with neuromuscular diseases. If there's one thing her disability does for her, it's giving her perspective.

"There's a lot of people who complain so much about things and then (I'm) like, 'That's not a real problem,'" she said. "I feel like it helps me feel almost grounded."

Nicole Minassian

Age: 20

Hometown: Naperville

School: University of Notre Dame

Who inspires you? My mom, Sharon. She's my favorite person. If I tell anyone anything, it's her.

What book are you reading? Nothing new, I'm taking a break for summer.

What music are you listening to? I like pretty much anything except rap. If I had to pick, it would be classic rock and Def Leppard.

The three words that best describe you? Quirky. Empathetic. Straightforward.