More people can enjoy Des Moines Arts Festival thanks to Quincy’s Sensory Space
DES MOINES, Iowa — Just leaving the house is no small undertaking for Quincy Hostager and his mom, Maria.
“It’s a lot,” she says. “He has a G tube, he has a pacemaker, he wears pull ups, he needs help, and he’s heavy.”
And that’s heavy for their family.
“For years when someone would ask me how I was doing, that was kind of a dangerous question because they would get the real answer. And sometimes I would just start crying.”
Quincy has Dravet Syndrome, a severe, rare form of epilepsy that’s left him unable to walk or talk.
“I think once I quit resisting it so much it got better,” Maria explains, “like, okay, how could we have joy given this situation? How could we make the most of this?”
They’ve done it by continuing to do the things the family loves, like biking and listening to live music.
“We try to be our own kind of rebels by living the best life we can possibly live. And we show that no disease is going to get the better of us as a family, too. And so that’s our act of rebellion. By having joy every day.”
Those joyful outings have often included their friend, Stephen.
“And one of the things as a festival producer that always struck me was, you know, the process of them bringing Quincy to an experience like that and seeing Quincy enjoy it so much and then their time being cut short because there’s nothing there for Quincy and or for the caretakers of Quincy if he needs recovery time, or if they just need a space to change or to regroup.”
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Seeing that frustration weighed heavily on him, so he decided to do something about it.
“I thought – we need to change this. We need to fundamentally rethink how we approach our festivals and this industry and provide an opportunity for everybody.”
And so the idea of “Quincy’s Sensory Space” was born.
Jill Wells is carrying the load when it comes to designing the enormous space, working with translucent vinyl to build the ceiling and walls.
“I’m constantly thinking; what would work for another person? What wouldn’t work? So you get a really interesting experience of how does the material impact other people and I think that’s why I’ve always loved art as a language.”
Each area will have different elements — from water and rice for sensory play, to darkness and soothing sounds for relaxation. There will be five in all, stretching nearly 100 feet.
“So you’ll have all these choices on how you engage in the festival in a way that meets your needs on that sensory level and that processing, and then go about your day again.”
It’s the sort of thing Quincy’s family has dreamed of and they’re thrilled to be part of lightening the load for anyone who refuses to let their needs exclude them from leading a joyful life.
“Is it going to be perfect?” Maria shrugs, “No. Is it going to be exactly what we need? We don’t know. But making the effort and going out of the way to try to include people is what our society is about. And that’s what makes the places the best to be is when you all know each other and care about each other.”
You’ll find “Quincy’s Sensory Space” in the 1400 block of Locust. It’s been made possible thanks to the generosity of DLR Group.
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