SINGING AND PAINTING
Marisa Bingham is unaware of the financial battles waged on her behalf—battles that will determine everything from how long she and her peers are likely to live to whether anyone knows what they think. Or whether they can sing.
“Being in these plays opened up doors and elements of her personality that we never knew existed,” says Bingham’s mother, Julie St. Marie. “We had no idea she could sing. But I’ll tell you, she sings all the time now. She never sang before. And we didn’t know she could paint!”
Marisa Bingham, with a few of her paintings, including a portrait of her mother (left).
St. Marie works at Best Buy. Her husband, Paul Bingham, quit his job to juggle their daughter’s frequent hospitalizations. “It gets to the point that you realize, one of us has to quit or both of us are going to get fired,” she says, shaking her head. St. Marie learned her daughter could paint when she arrived at a Partnership Resources gallery show and found a magnificent portrait—of herself.
“I was there,” remembers Munk. “Julie just broke down in tears of joy. It was one of the most moving moments in my life. Imagine having a daughter, and you’re always so busy keeping her alive that you never really get to think about whether she notices you, and one day there it is: She sees you and thinks you’re glorious. Those are the opportunities we create.”
Of course, opportunities bring new challenges, which bring new opportunities. Challenges like, now that Allison Baldridge has tasted the sweetness of stardom she wants more. “I believe in miracles, so I can move to Hollywood,” she says. “Though I hear Hollywood is a bad place to stay. I got a call from a guy in California. They’d pay me $100, $700, to act in Hollywood. But first I have to pay them $280.”
She told him she’d get back to him and consulted the job coach who accompanies her during her shifts at Target to help her remember how to act and what’s expected. “My job coach was like, ‘Allison, you’re being scammed!’”
Bingham’s mother worries about her getting scammed, too. Bingham isn’t allowed to go on Facebook unsupervised because she’s so trusting the family fears she’d give the first person who asked her social security number.
A VEIL LIFTED
People like Baldridge, Bingham, and Neiss are the very definition of vulnerable adults, and Minnesota’s disability advocates worry about the societal costs of not having adequate programming for them. The costs are high if they become victims of violence or crime, are financially or sexually exploited, or are unaware of basic medical issues like hydration that will lead them to the emergency room. Costs are also high for their families.
“Services are being more and more watered down,” says Munk. “Purely from an economic standpoint, for every family that has a disabled child and doesn’t get help, you’ve removed one if not two parents from the workforce—you’ve ended one or two careers.”
Munk believes reversing this trend is just a matter of raising “the veil of ignorance” about disabilities by encouraging the severely disabled not only to read but to write, paint, sing, and dance. As a byproduct, the rest of us are suddenly given a window into the inner lives of the disabled in a way that humanity never has experienced before. This veil-raising will continue with plays and, in the fall, a disability film festival for which Munk is currently seeking volunteers. “When we have this film festival, it is going to blow people’s minds,” he says. “We’ll have a red carpet for our clients.”
This makes Baldridge happy. Contemplating a red carpet, she ducks her chin and laughs. The fall is a bittersweet time for her. It’s her favorite season, but then it reminds her of when her grandma passed away. They were close. When she was little her grandparents called her the banana stealer. “Because whenever I’d go to their house I’d steal their bananas all the time and dip them in ketchup.”
Baldridge might include this detail of her life in the play she is working on, which will be autobiographical. “I want to act more,” she says. “There’s a huge hole in me. There’s something missing. The acting, singing, dancing—each time I’m on stage it fills that hole. It’s a great feeling.” Remembering the feeling, she begins a smile, her pink cheeks rising. Then she buries her smile in her hands. “I think the thing that wouldn’t come out of me if I was just working, or just at home, is my smile. I have to fake-smile at work, because I have to be on. I have to pretend I’m happy when I’m not. But when I’m onstage that’s my real smile.”
With that, Baldridge lets her hands down and glimpses up, her real smile starting to peek out, and then she lifts her rosy cheeks and her eyes sparkle and her broad, real smile lights up the room. Her aide then helps her figure out how to put down her song sheet, helps her put on her coat, and gives her back the song sheet. These are the new lyrics she’s learning for her new play, which she has been laboring over for months. With that, she’s ready to board a little bus and go to play practice, where she’ll take her turn in the spotlight, on stage, a star.