How A Nashville Summer Camp Uses Country Music To Help People With Williams Syndrome | Nashville Public Radio

How A Nashville Summer Camp Uses Country Music To Help People With Williams Syndrome

Jul 27, 2017

The Grand Ole Opry is country music's Holy Land.

It's home to the weekly radio show that put country on the national map in 1925. And it's where this summer, 30 people with a rare genetic disorder called Williams syndrome eagerly arrive backstage.

"Welcome to the Grand Ole Opry," says their tour guide, Clancey Hopper. "We’re so excited to have you all here this evening."

Hopper starts her tour by showing them the numbered mailboxes where fans can send letters to Opry members, then walks them down the hall so they can peek inside the dressing rooms. The campers are ecstatic.

People with Williams syndrome are known for having incredibly outgoing personalities — and a profound love for music. But researchers are still trying to figure out where this musical affinity comes from and how it relates to their disability.

That's why researchers at Vanderbilt University set up a summer camp for people with Williams syndrome in Nashville, where they both participate in research and get immersed for a week in country music.

Country Stars Get Involved

Hopper loved this Opry tour even before she got hired as a guide — because she used to come as a camper. She also has Williams syndrome and attended the camp for eight years before applying for a job. It’s clear why she got it: She's a master at pumping up the crowd, although admittedly this crowd is easily pumped.

By the time she takes them out to the stage — a tiered auditorium that seats more than 4,000 — campers like Rachel Flamm are overwhelmed with wonder.

"I’m trying not to cry," Flamm says, "but it’s so hard."

This camp is a collaboration between the Vanderbilt Kennedy Center, which studies developmental disabilities, and the Academy of Country Music, which funds the camp through its ACM Lifting Lives program. Campers spend the week meeting country stars and visiting recording studios. This year, they wrote a song with country star Dierks Bentley, and the grand finale is performing the song they wrote this very night, live on the Opry.  

Jared Glenn, one of the campers, is 32 years old and lives in Detroit. He loves country music, so he’s been in a state of bliss.

"It’s been a whirlwind," he says. "I’ve never, ever been to the Opry, and I’ve always seen it on TV. And to be here now is amazing. It’s absolutely amazing."

Clancey Hopper starts her tour for the Williams syndrome campers.
Credit Emily Siner / WPLN

It’s also just nice to get out of the house, he says. People with Williams syndrome have an intense desire to connect with others but don't always know how. Because their disability can also often prevent them from getting jobs, camp director Marisa Fisher says, "they just kind of sit and home and don’t have a lot to do during the day. So this is the big event that they look forward to all year long.”

Encouraging Independence

But the camp is more than a social outing — Vanderbilt is also doing research.

This year, Fisher, who is an assistant professor at Michigan State University, has been studying the campers' friendships and designing an intervention program to help them interact with people more effectively. Other researchers are looking at how to teach them safety skills, which seems to go against their natural inclination to be friendly and trusting, and examining why music affects their brains differently.

There's also a large component of helping the campers gain independence. Fisher says the camp encourages them to stretch themselves in a way that their parents might not.

“We give them sheets and say, 'Make your bed.' We don’t make the bed for them," she says. "We don’t allow parents into the dorm, so they can’t unpack their bags or set out their clothes. We say, 'No, this is their week. They can do it.' "

This method has been helpful for 23-year old Sarah Myers, who says the camp has helped her figure out how to use a knife to cut food. It might seem small, but she says it’s boosting her confidence. And for Clancey Hopper, the Opry tour guide, she still draws on her lessons from camp.

“One year we had a mindfulness class, and it really just taught us how to just being able to be present … and just breathe through different things.”

Campers are clearly trying to use these mindfulness techniques as they wait to go on the Opry stage for their final performance. Some are shaking with nerves and trying to calm themselves with deep breaths. Country singer Chris Young is already out there performing, and when he finishes his song, the campers file on in two lines.

The song they wrote is called "I Love Big." It’s about themselves, how they get so excited about the things and people they love.

“Go be brave, go be bold," they sing. "Don't be afraid going for the gold."

They belt it out over the band. In the last chorus, one camper in the back goes a bit rogue: He breaks formation to wave his arms overhead in time with the music. The audience loves it and follows his lead — and at the end, gives a standing ovation.