At 10 a.m., Mark Steidl, 29, sits in a swing hovering over the bed in the Highland Park home of parents Tina Calabro and David Steidl. The device carries Mark — nattily attired in peach shorts, beige and white-flowered shirt and orange Columbia sneakers — to a mobile wheelchair.
Continuing the morning routine, home care nurse Christina Galia squirts nasal spray in her client’s nostrils, brushes teeth, shaves Steidl’s face and trims the goatee. She sprays watermelon scent on Steidl and wets and combs her client’s rainbow-streaked hair, a proud symbol of gay identity.
Born with cerebral palsy, Steidl maintains a lifeline to the world through a wheelchair. Once strapped in, Steidl, who prefers they/them pronouns, can be moved indoors and outdoors and tap their head on a switch to a Tobii Dynavox communication device to talk in an electronic voice like Siri.
It takes Steidl about two hours from awakening for their nurse to get them ready to face the world, campaign as a disability and LGBT rights activist, work in technical support for a company that makes communication devices — and even, this summer, co-write an opera.
On Oct. 16, Steidl will star in a performance of “The Other Side of Silence,” an opera co-written by them and based on their life. The performance, part of the 2024 International Symposium on Assistive Technology for Music and Art, is set for 7 p.m. at the Curtis P. Priem Experimental Media and Performing Arts Center in Troy, New York.
“I’m thrilled to be on stage because I get to educate people about my lived experience with cerebral palsy,” Steidl said in an email.
Sponsors of this event – Rensselaer Polytechnic Institute, Opera Saratoga and the Bergamot Quartet – hail the opera as groundbreaking. For decades, opera ignored people with disabilities, particularly those using communication devices. This opera features a real person with a disability, not a performer playing one, and showcases synthetic voices.
“Because we have a performer who uses a synthetic voice, we are using that voice,” said Mary Birnbaum, general and artistic director at Opera Saratoga. “It’s calling into question our idea of what music can be.”
The work also highlights the natural conflict between protective parents and adult children with disabilities and addresses the alarm over the impact of artificial intelligence on humans.
Co-librettists Steidl and Katherine Skovira, a mezzo-soprano and voice instructor at Rensselaer, wrote “The Other Side of Silence” by meeting remotely on Saturdays online and working on a shared document.
The October performance covers the first of three acts. The creative team hopes that the sponsors can raise money to stage the other acts of what may mark the first opera with synthetic voices.
“It’s a bit of a shame on the industry that we haven’t been thinking this way 20, 30, 50 years ago, from the beginning,” said Robert Whalen, composer of the opera and a music lecturer and conductor at Rensselaer.
“Collaborating with Mark has been one of the highlights of my professional life,” he added. “They’re a joy. It struck me that there’s a bigger story to tell about their life, and it’s a story that we can all relate to. It deals with our desire to communicate and connect with each other.”
A key to the story, Whalen said, is that while the human voice is as unique as a fingerprint, the stock synthetic voice of people who cannot speak does not match their identity.
At one point in the opera, Steidl will sing in a customized voice using technology from Dreamtonics, a Tokyo firm, Whalen said.
“There’s more to you than what people would see or hear from the outside, and that’s one of the central themes of the opera,” he said.
Three of every 1,000 births
Mark Steidl was born in 1995, the second of two children. Older brother Paul is an architect in Oakland, California. As a result of complications at birth, baby Mark lost oxygen for 12 minutes. A few months later, the infant was diagnosed with cerebral palsy.
The currently incurable disorder has stolen the use of Steidl’s limbs, stilled their physical speech and left them unable to taste food. A feeding tube drips formula directly into the stomach.
Three in every 1,000 births result in cerebral palsy, according to Mark Gormley, a doctor of pediatric physical medicine and rehabilitation at Gillette Children’s Hospital in St. Paul, Minnesota. Besides a lack of oxygen, other causes include bleeding in the brain from prematurity, malformation of the brain and a genetic condition.
Symptoms range from mild, like walking on toes, to severe cognitive issues and the inability to walk, talk or eat. Steidl’s limitations, though, are strictly physical.
“I have followed thousands of children with cerebral palsy, and having someone write an opera is a new one,” said Gormley, who is a member of the board of trustees and research council of United Cerebral Palsy. “It’s unusual for anybody but especially someone with cerebral palsy.”
David Steidl and Calabro encouraged music in their Mark at an early age. As a toddler, Mark Steidl sat on a babysitter’s lap and explored the piano. Starting at age 8, the child attended the Notes from the Heart camp at The Woodlands, a nonprofit group serving children and adults with disabilities. There, the youth learned to create, perform and teach music and play a drum machine in a band called Out of the Units. The teenager also played in musicals at Brashear High School.
As an adult, Steidl served as assistant teacher for the now-defunct Music Makers class at The Woodlands and presented music appreciation lessons about various genres.
Steidl also serves on the board of Disability Rights Pennsylvania and as program manager of Self-Advocacy Voices, a group that encourages adults with disabilities or mental health issues to speak up for themselves.
Despite their physical limitations, Steidl wrote, “I don’t get depressed because I love my sass, and I go out a lot.” But what sometimes demoralizes them is prejudice against people with disabilities.
To Mark’s mother and father, involvement in writing an opera is no surprise. “All the participation they’ve had in music all these years has led to this project, and there will be others,” said Calabro, 71, a writer on disability issues.
The director
At 1:30 p.m., Steidl rides in a wheelchair down an elevator to the exercise room in the family’s ranch house. Physical therapist Holly Bacasa detaches the wrist cuffs and footrest straps, swivels away the arm to the communication device, and they start a 90-minute regimen.
She lifts up Steidl’s frame, under 5 feet tall and weighing 90 pounds, onto a transfer board that pivots them into a standing position.
“In the past two weeks, they’ve been doing some of the best walking of their life,” with support, Bacasa said.
Scenes from Mark Steidl’s physical therapy session. At left, physical therapist Holly Bacasa braces for Steidl’s movements as they work to rock back and forth to drumming sounds on Sept. 27, in Highland Park. Bacasa has been using music to cue the patterns and rhythms of walking with Steidl. (Photos by Stephanie Strasburg/PublicSource)
Holding onto the end of a mat, Steidl bows their head and smiles at the beat from a bongo metronome on a cell phone. They lean forward and back.
“Keep it going,” Bacasa urged. “It’s one thing if I do it. It’s a whole other thing if you do it.”
Steidl moves sideways. “The sideways movement is the tougher one,” Bacasa explained.
Throughout the session, Steidl’s head moves and eyes dart. The therapist and nurse are perplexed at what their client wants. After a series of questions, with Steidl blinking twice for yes and once for no, they figure it out. Steidl is trying to position a photographer for the best picture. When another visitor teasingly dubs them The Director, Steidl erupts in a high-pitched volcano of laughter.
Badge of honor
Steidl boldly allows PublicSource to see the drool bubble in the corner of their mouth, hear the hums and yelps, observe the involuntary kicks, shaking arm and scissor steps.
“I want to be an inspiration and mentor to other people with disabilities, and empower them to live life to the fullest,” Steidl wrote in explaining the reason for opening up their private life. “I’m very self-confident, and I try my very best not to let anyone boss me around or underestimate my abilities.”
Steidl wears gayness as a badge of honor. A sign above their desk proclaims, “When the Queen is happy, there is peace in the kingdom.”
“I have overcome my cerebral palsy by speaking up and living authentically as a gender nonbinary gay queen,” Steidl said. “I’m proud of who I am and I’m not going to change who I am for anybody.”
Light and shadow
A key subplot in “The Other Side of Silence” is the conflict between nonbinary Zari, the Steidl-like character who uses a wheelchair and communication device, and their mother Grace, the stand-in for Calabro.
Calabro welcomes the real-life tension being played out on stage. “Because we’ve been with Mark all the time and we support them so many ways, it’s hard for me to let go and let Mark call the shots and make decisions for their own life,” she said.
The opera starts with Zari enjoying the interplay of light and shadow from a window. The light symbolizes self-knowledge, inner strength and, to Steidl, freedom.
To get more control over their life, Zari leaves home for a corporate-run house embedded with artificial intelligence and managed by a digital assistant, the Chimera, nicknamed Kim. During a medical emergency and against Zari’s will, the company installs a neural implant, sapping many memories into the omnipresent, Alexa-like Kim.
That scene mirrors the fear of a society that welcomes technology yet does not fully grasp what it may be giving up. “Technology has consequences. It’s moving faster than our understanding and public policy can match,” Skovira said.
Grace seeks to rescue Zari. But by then Mephistophelian Kim has robbed Zari’s memories save one. In the end, Zari, like Steidl, lives proudly in a broken body with a brilliant mind that longs for light.
Bill Zlatos is a freelance writer in Ross and can be reached at billzlatos@gmail.com.
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