MacPhail Center for Music’s “Light in the Well”

Five years ago, Ferol Grode showed up to her first day of music therapy in a “Life is good” T-shirt. Her mother, Patty, had one on, too.

To a stranger, that message might have seemed woefully disconnected from the people bearing it. Ferol was a 21-year-old living with Partial Trisomy 13, a neurological condition that steals away her ability to talk, walk upright, track objects and focus her attention. Throughout her life, she’s endured seizures, multiple surgeries, and a bent spine that put her in a permanent crouch. And yet…

“They had such joy radiating from their faces,” says Yue Wu, Ferol’s music therapist. “I was drawn in.”

In “Light in the Well” (Sunday, October 3 at 3 pm), a multi-sensory event at the MacPhail Center for Music, Wu will highlight Ferol’s story—and three others—as she fleshes out this unusual truth about people with disabilities. They have an uncanny ability to access joy and hope—a skill set that ironically eludes a lot of people.

A collage of 4 photos

Through her therapy work at the MacPhail Center for Music, Wu’s come to understand that living with a disability is like being stuck in a deep, dark well. It can isolate people and hide them away from the rest of the world.

“I’ve gotten to know these people,” Wu says. “And they’ve enriched my life. I hope this project will be a conversation starter. I want those who experience it to think, ‘Who around me in my life is affected by disabilities? Is there someone I can get to know and be part of their life?’”

Wu brought on composer Phil Shorey—she knew him from playing piano in his orchestra—to create an original score. His task was to musically reflect the joy that springs from the perseverance of these families. And that didn’t mean sugarcoating their experiences.

“We’re openly trying to show the harshness of their reality, which is full of struggle,” says Shorey. “But by the end, our conclusion piece conveys the idea that here is love in its most hopeful, heroic form.”

The hour-long live orchestra tells the stories of four families with children with disabilities—who will also participate in the event in person, playing piano, kazoo and paddle drum, singing, or dancing. Three of the performance’s subjects are Wu’s clients. A fourth is a man she met at the University of Minnesota, where she is a doctoral candidate in Rehabilitation Science. He was at her school as a guest speaker.

Across the board, their developmental challenges are steep. James is a 21-year-old pianist with moderate to severe autism. Beth is a 13-year-old Native American who’s spent a lifetime enduring the effects of a brain tumor as an infant. Nathan is a 43-year-old speaker, writer, dancer, and drummer with Down Syndrome. The above-mentioned Ferol will soon be 26, and despite her challenges, Wu says she is “living her life to the fullest.”

Wu’s music therapy work varies widely. But there’s a general concept in brain science that applies to all her clients: “Music engages the whole brain,” she says. “It can even access areas of the brain that are blocked off.” Thus, she’s been able to help clients engage in activities like speaking, walking, focusing or regulating their mood—all through music.

Ferol was benefiting from music therapy long before Wu arrived at the MacPhail Center for Music. When she was in elementary school, a music therapist from the center visited and worked with her class. Ferol loved it. Years later, after her high school graduation, Patty signed Ferol up for therapy at the center itself. That’s when she met Wu, and their sessions are still going, five years later. (Lately, of course, they’ve been virtual due to the pandemic.)

“Wu’s heart is as big as she is smart,” Patty says. “With some other music therapists, it was more about the experience of it, just having fun doing musical things. Wu was actually trying to get Ferol to use her brain.”

Through engagement with music and singing, Wu helps to prime Ferol’s speech and sequencing. Sitting on a therapy ball primes her body to be ready for her session. She follows color-coded piano keys, which helps with hand-eye coordination. And she walks while hitting a paddle drum, extending her upper body so she can functionally use her arms to reach things at home. Patty describes that last skill with awe.

“She was walking fast and keeping beat to music,” Patty says. “You could practically see the wheels turning in her head, trying to figure out how to move her body. It opened up her mind to think about these things.”

When Shorey talked to the families involved in the project, he noticed a similar theme in all of their stories. They had big dreams for their children, but their plans went sideways.

“You imagine playing baseball and all the different things you might do together,” Shorey says. “And then that dream crumbles, and a new dream is born. The consistency in every story was the love that the parents had for their child.”

In Patty’s case, doctors told her that her infant wouldn’t live a year. Twenty-six years later, Ferol is still by her side—and one of the stars of “Light in the Well.”

Shorey began with an orchestral palette that was warm, unaggressive, and unique. Along with strings, woodwinds, keyboards, and percussion, he added some playful, unexpected qualities to his orchestra: a toy piano, a typewriter, two rubber chickens, bells, and a musical saw and bow.

“Part of this show is trying to break that traditional conception of an orchestra,” Wu explains. “People are all different, and so are the instruments in this orchestra.”

Shorey themed the musical score around the five stages of grief: denial, anger, bargaining, depression, and acceptance. Then he set about creating musical versions of these stages. For bargaining, he led a back-and-forth motif between instruments, such as percussive versus melodic. For depression, he used a lot of heavy strings, bassoon, and a singing saw that sounded like crying. He also used a toy piano, a choice that sounds counterintuitive until he explains it.

“The parents hear the happy news of a new baby,” Shorey says. But they also receive difficult news. “So, the playful tune on the toy piano comes across as ironic.” And it mimics the innocence of a new baby, who doesn’t yet know the challenges ahead. Wu points out that many people abandon babies with disabilities. That’s why the toy piano strikes an even sadder note in Beth’s story. She was still a baby when her birth mother was unable to care for her, and she put in foster care.

On the other hand, Beth ended up in the arms of her incredibly loving foster mom, Diane, who eventually adopted her. And who, much later, brought her to music therapy with Wu.

“Beth sometimes protests the “work” she has to do in physical and occupational therapy,” Wu says. “Since music motivates Beth, music therapy makes the work fun.”

The idea of an overpowering love is a through line in all four stories, and Shorey conveys it with variations on a lullaby. He uses many kinds of instruments to present this theme. But in the acceptance stage, he presents it in a completely unique way: He harmonizes the squeaking of two rubber chickens.

“All of a sudden, here come these chickens,” he says. “It’s the love theme like you’ve never heard it before. It’s not what you expected. You meet this child and feel the love they have, and it’s not wrong. It’s just different and full.”

Wu’s own love for her clients is evident when she describes their accomplishments.

“Nathan is a showman by nature,” she says. “He’s a performer, and he’ll be dancing at the event.” And she points out that James, who’ll be playing primary piano, has harnessed his own, substantial strengths.

“He has perfect pitch and a photographic memory,” she says. “He’s paid to play piano at airports, hospitals, nursing homes, and chapels.”

She hopes that society will embrace all her clients, and the project’s finale is an outpouring of that desire. Humans of all shapes, sizes and aptitudes will be in the audience—or will see the event online. The center will provide sensory-friendly items (like blankets, bean bags, fidget spinners, stretchy bands, etc.) to encourage people with disabilities to participate. And there will be a singalong, with all the instruments coming together as well.

“The unique component is that it’s for people who are actually there with you,” Shorey says. “You’ll see the acceptance happening right there among the audience, in front of your eyes, like a self-fulfilling prophecy.”

Just as Wu uses music to reach deeper into her clients’ brains, “Light in the Well” is intended to have a similar effect. The project’s musical elements will allow the audience to take in these stories on a deeper level.

“Light in the Well” is the first in what Wu hopes will be a series of events. The next one, “A Day of Hope,” will include the “Light in the Well” performance, a forum/panel discussion, a music workshop for people with disabilities and their families, a documentary, and a resources fair with local organizations.

“People without disabilities have very little experience about what it’s like,” she says. “People can have as much knowledge as they want about disabilities, but it is the ‘experience’ we are calling on people to participate in. We need to do things with those who have disabilities, or rather, allow those with disabilities to be a part of our activities. Know them, appreciate them. From here, try changes will start to happen. The long-term goal is to bring people with and without disabilities together. We can share life with one another.”

-September 2021

Published on Date: Sep 23, 2021
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