Finding comfort at Sonshine
WILLMAR -- When most people camp out at Sonshine, they make sure to bring the essentials: a sleeping bag, sunscreen and plenty of snacks. But when Amanda Krause, 23, and her mother Martha come to camp at the festival, they have to haul along everything from a Hoyer Lift to an oxygen tank to a portable air conditioner.
Amanda, from Fergus Falls, has Friedreich's ataxia, a rare neuromuscular disease that causes muscle loss, severe scoliosis, heart failure, hearing and vision loss, slurred speech and sometimes -- as in Amanda's case -- diabetes. When she was first diagnosed with the disease at 9 years old, she wasn't expected to live past 15, her mother said.
But 14 years later, Amanda is still refusing to let the disease stop her from seeing her favorite bands, like the newsboys or Skillet. She's been coming to Sonshine since she was 12 years old -- but back then, Sonshine didn't have any special campsites reserved for disabled festival-goers.
"There was wall-to-wall tents," her mother Martha said of their early years camping at the festival. "Amanda would be in her manual wheelchair or her scooter, and she would rip down tents. People got mad at us."
That's when Martha's maternal, protective nature kicked in. She started asking the Sonshine board of directors to make the festival more handicapped-accessible. It took several years, but in 2005, Sonshine teamed up with the nonprofit Christian organization Special Touch, which provides support services to people with disabilities, to revamp the grounds and make them more accessible.
Now, the festival sets up a special campsite each year for people with disabilities, complete with portable showers, a mobile nursing home, lifts, generators, wheelchairs, scooters and wheelchair batteries.
If anyone with a disability needs to use something, they just have to pay a small deposit, which they get back when they return the equipment. The organization also transports disabled campers back and forth from the Main Stage to the campsite, according to Charlie Chivers, president of Special Touch.
"I'm thrilled that the Sonshine leadership has seen the value in including people with disabilities in the festival," Chivers said. "They really want to facilitate people with disabilities."
Sonshine camping director Rene McCullough said it was never a matter of wanting to include people with disabilities, but how that could be accomplished.
"There was a definite need for accessibility," McCullough said. "We weren't cutting it. We felt there had to be a better way."
And setting up a handicapped campsite was never about selling more tickets, festival director Bob Poe said. In fact, if disabled attendees register for the festival through Special Touch, they get a free festival pass for themselves and their primary caregiver.
"Not only do we want them here, we're paying them to come," Poe said.
Martha Krause said all the changes have made it much easier for her and her daughter to come to the festival every year. And they'll continue to come as long as Amanda's health allows, because hearing the music helps her cope with her disease. Her favorite newsboys songs -- "Lord (I Don't Know)" and "Shine" -- sometimes even raise her blood pressure and oxygen to normal levels, her mother said.
"Every year is a new challenge," Martha said. "A lot of medical professionals say we're out of our mind, and that she could die out here. But Amanda says, 'What a way to go.' She won't put any limitations on herself."