Scotty Bledsoe, affected since age 4 with a rare neurological disorder that has impinged on his speech, muscles and learning, clasped the hand of the girl next to him.
“I’m 21, and she’s my girlfriend,” he blurted, smiling broadly and revealing his relationship with Katie Roell with youthful relish.
“I am his girlfriend,” Roell, 19, affirmed, holding tightly to Bledsoe’s hand, and blushing. Her disorder, trichothydystrophy, which also affects intellectual development, is known to exist in only 100 people worldwide.
Nearby sat Nikki Sanders, 24, a single mom from Platte City who in May graduated with her masters in social work from Park University. Her cerebral palsy, the result of being born premature and lacking some oxygen, has given her a limp in her left side, but that’s all.
On the heels of a divorce, “my music made my heart come back to life,” she said.
Amanda Plachecki, soon to be 24, of Platte City, was there, too. She was born with what appears to be perfect pitch along with a genetic disorder affecting cognitive development called Williams syndrome.
Missing from rehearsal on Wednesday after the Fourth of July holiday were up to nine other members, including one with spina bifida and another, an 18-year-old with autism.
“OK, let’s begin,” said volunteer director Heather Schouten, 26, of Kansas City.
She wheeled herself to the front of a meeting room at The Whole Person. At age 4, a car accident severed her spine and paralysed her from the chest down.
Begun in April, this tiny choral group – known as Tota Voces, loosely translated as Whole Voices – is hers to lead, although the idea was that of Terri Goddard, The Whole Person’s manager of resource development and community outreach.
Goddard said the notion of the choir came to her after watching numerous other local choirs and noticing how there always seems to be one or two individuals in any single choir who are in a wheelchair or have some other disability. It dawned on her that the problem isn’t that people with disabilities are excluded, but they are not being purposefully recruited.
“I thought that is what’s missing,” Goddard said. “Maybe we should start something that intentionally invites people with disabilities.”
Other choirs composed primarily of individuals with special needs do exist in the United States and elsewhere. But their numbers are few.
Goddard said her hope is for what she calls Whole Person’s “ability choir” to grow to the point where it includes a large mixture of people with disabilities as well as those without, including parents or guardians, brothers, sisters, friends and others. All are invited to join.
As for the repertoire, it currently is rudimentary.
“All right. Remember this song?” Schouten said, after warmup and handing out sheet music. “Ready? First verse, On Top of Spaghetti. Go.”
On top of spaghetti, all covered with cheese, I lost my poor meatball when somebody sneezed.
“Good. Can we keep going? Let’s do all of the verses,” she said.
It rolled off the table, and dropped to the floor, and then my poor meatball, it rolled out the door...
Other songs followed, one called Chumbara, another titled Harmonize the World, frequently sung by the Sweet Adelines, an international women’s barbershop harmony organisation of which Schouten is a member.
Sanders, for one, knows that the small limitations of her cerebral palsy don’t keep her from singing in other choirs, and she sings in others. But this choir, she said, offers her a community of shared experience.
“I have cerebral palsy and I’ve always found it pretty difficult to fit in in choirs that cater to people who are normal,” she said.
In high school and in the years before, choir and theatre directors tended to treat her differently than other students out of what Sanders said she perceived was likely a misguided sense of kindness.
Because of her cerebral palsy, Sanders said, she frequently was not required to audition to get into a choral group or, say, a musical theatre cast. At the same time, she also found that she was often overlooked when it came to prime singing parts or theatre roles.
“I’ve always had a really good voice,” she said, “but haven’t really been able to shine very well. Teachers (felt) like they knew what was best for me, so they wouldn’t want to try to put a lot of pressure on me. ... They didn’t want to put me in any dancing choirs or anything they kind of considered too excessive.
“I think I was honestly being discriminated against a little bit. They didn’t mean to do it. I just never even got to audition. Especially when it came to musicals. I felt like I could excel. I got to be in them, but mainly it was chorus roles or background roles.”
In this choir, she said, having a disability doesn’t set a singer apart, but instead “it’s just the common ground.”
“I love the diversity of it,” Sanders said, “just the inclusiveness of all different types of abilities, and that we can just support each other and encourage each other. We don’t exclude anybody; we don’t exclude anybody who is abled, either.”
For Scotty Bledsoe of Weatherby Lake, choral singing is a public extension of what he does at home all the time.
“Every night I go up and sing in my room,” Bledsoe said. Mostly, he said, he’ll sing love songs.
His parents, Eva and Mike Bledsoe, explained that their son developed opsoclonus-myoclonus syndrome – an autoimmune disorder so rare that it occurs in only about 1 in a million people – after what they suspect was a viral infection when Scotty was about 4.
The disorder is more colloquially called “dancing eyes-dancing feet” syndrome for its characteristic rapid eye and jerky muscle movements. He’s had numerous therapies including chemotherapy and plasmapheresis, which removes damaging antibodies from the plasma part of blood, to control it.
“He went through more before his 15th birthday than a lot of people go through their whole lives,” Mike Bledsoe said.
Music has always been his son’s joy. “He sings down the street,” Eva Bledsoe said.
Schouten, the choir’s director, understands what it can mean to be overlooked or underestimated because of a disability.
Musical her entire life, Schouten had begun piano lessons even before the paralysing car accident at age 4. She began violin at age 10.
“I did choir and stuff, but doctors said that I would not be able to sing properly because I didn’t have full use of my diaphragm,” Schouten said.
Even though she liked to sing and took part in school choirs, she carried the notion with her all the way into college that she could never train formally as a singer. But it was there, at William Jewell College, which she attended before going on to the University of Central Missouri in Warrensburg, that a music professor suggested the doctors were wrong.
They were wrong. Schouten had full use of her diaphragm.
Originally a music theory major, she added vocal music education to her degree. She went on to graduate school to study conducting, currently works as an office assistant at Numotion, which sells medical mobility devices such as wheelchairs, and is interim director of the Show Me Sound Chorus in Sedalia and assistant director of the Kansas City Chorus, both linked to the Sweet Adelines International.
“This is an outlet for them to be creative without judgment,” Schouten said of Tota Voces, “or without being pushed away, without a specific standard to try to meet.”
When Bledsoe auditioned, he sang Taylor Swift’s Shake it Off. Roell, his girlfriend, sang a Sam Hunt piece. The two met at Park Hill High School and it was love at first sight.
“He has a microphone and a speaker and he gives us concerts” at home, Bledsoe’s mom said.
“When I get older I want to go on stage and be like a star,” Bledsoe said.
Although his voice circles and wavers around the right notes, “he makes up in enthusiasm what he lacks in ability,” his dad said. “He knows the words to all these songs – he loves to listen. For him, I think that this is a lot of how he copes with all that has happened to him.”
For her audition, Amanda Plachecki of Liberty sang Circle of Life. Schouten emphasised that the audition process is only about determining the range of one’s voice. Everyone is accepted.
“She sings all the time,” Cathy Plachecki, Amanda’s mother, said of her daughter. She explained that individuals with Williams syndrome, which involves a deletion in the seventh chromosome, tend to be highly musical. Amanda also plays the keyboard.
“She has such good pitch,” Cathy Plachecki said. “I remember when she was little and she said, ‘Mom, make the G sound.’ I don’t know what the G sound is. She produced a sound. I went to the keyboard and produced a G. And it was spot on.”
“I love to sing,” Amanda said.
At the front of the room, Schouten started in on another song.
“Right now, we’re going to move on to Chumbara,” she said. “Let’s start at the do-re-mi section....Right on do, re, me. Ready? Breathe....”
Do, re, mi, fa, so, la, ti, do, do, ti, la, so, fa, mi, re, do, re... -TNS
