Oklahoma singer Allie Williams defies rare disability to pursue dreams in music

May 2—When Allie Williams was a child, she was told that her dreams of becoming a singer would be impossible.

Of course, when she was a child, she also was told that she wouldn't live past childhood.

Now, the Stillwater resident is getting ready to celebrate a milestone birthday, recently received her degree in vocal music and, despite a global pandemic, is working to book her first online student for voice lessons while raising awareness of the challenges people with disabilities often face.

"My parents were told that I would not live past 6 years old and just to take me home and to live with me until I died. And that was the expectation of my life. I will be turning 40 (on May 9) so obviously, the doctors were wrong," she said with a laugh.

When Williams was 18 months old, she was diagnosed with spinal muscular atrophy, a genetic disorder characterized by weakness and wasting in the muscles used for movement. Before starting last year on a new medication, the Oklahoma native said she thinks her love of music helped keep her healthier than she might have been otherwise.

"As you get older, you lose strength. ... But I think music had a really big part in keeping my lungs healthy," she said. "I think music just in general has saved my body and kept me stronger than what was expected of my body."

Growing up in Pryor, Williams always sang in the school choir and played clarinet in the band.

"I played the clarinet up until junior year of high school when my right hand stopped working. ... So, when I wasn't able to play my clarinet anymore, I moved to choir as my passion," she said

When she graduated high school, she intended to follow family tradition to Oklahoma State University but ended up instead in Claremore at Rogers State University, where she got a graphic arts degree.

"I got scared because I didn't want to be far away from my family. I'd never lived on my own without my family. It was just too big of a step for me," Williams said. "I had always planned on going back to getting my music degree. And life happens."

She got married and moved to Colorado, where she continued to sing with a community choir and often was told she would make a good music teacher. She moved back to Oklahoma after her divorce and was encouraged to try out for the OSU music program, which she did in 2015, at the age of 34.

"I will never forget when Allie reached out to me requesting to audition for the vocal program," April Golliver-Mohiuddin, OSU associate professor of voice and co-director of opera studies, said in an email.

"Although I had never worked with a voice major with SMA, I was intrigued by her story and excited to learn and help her reach her goals. Allie possessed all the necessary skills for success, including a strong work ethic, great musicianship skills, determination to persevere through tough obstacles, a strong desire to learn and a maturity that helped lead and guide younger students."

Finally going to OSU lived up to Williams' dreams, but it wasn't a fantasyland.

"I felt more welcome in the first week of school than I ever had anywhere. I was like, 'Oh God, I'm showing up with bright blue hair, piercings on my face, tattoos everywhere — and at 34. I'm literally as old as these people's parents.' ... And these young adults, they treated me as equals, they wanted to know me, they wanted to be my friends. ... I never felt like I was an outsider at all," she said.

She said it was hard, but teachers were helpful and encouraging.

Donna Waldrop, Williams' caregiver, said she continually was amazed at her friend's determination while pursuing her degree.

"She couldn't always go to the performances; she sang from the floor. She had elevators break, and she was stuck in them. The school staff, they were amazing with doing everything and bending over backwards, but the building itself just wasn't accessible. So, the new facilities are a godsend for disabled people," Waldrop said.

During Williams' time at OSU, the Stillwater university celebrated the long-awaited opening of its McKnight Center for the Performing Arts, which the lifelong wheelchair user described as "the most accessible building I've ever been in."

It was the stage that she was looking forward to performing her senior recital on last year, until the COVID-19 pandemic put her plans in jeopardy.

"When we went home at spring break and didn't come back ... I was OK with it. And then summer came and then was gone. Then my actual last semester as a senior started, and I came to the realization that I wasn't going to see any of these people again after March 13. That was the last time I was going to see — oh, I might cry a little bit — all the people that had been very supportive of me ... in person," Williams said.

She said the McKnight Center staff decided to do whatever it took to allow her to safely perform her senior recital on that stage, rather than at home, even though she would be singing with only her vocal professor in attendance.

"Allie's recital was an outstanding representation of her constant hard work, discipline and dedication to her love for music and music education," Golliver-Mohiuddin said. "In all honesty, it was a night I will cherish for the rest of my life."

Since graduating in December, Williams said she mostly has been taking a break and staying safe from the pandemic. She has been using Tik Tok to raise awareness of issues disabled people face and has garnered almost 150,000 followers.

She has received both her COVID-19 vaccines, has been booking her first online client for voice lessons and has been looking forward to gathering with her family for the first time in almost a year at the Castle of Muskogee's Renaissance Festival.

After starting last September on Evrysdi, the first FDA-approved at-home treatment for SMA, she said she has noticed improvements in her energy, stamina and movement, which makes her even more eager to start her post-pandemic life.

Williams said she hopes that her accomplishments will inspire others with disabilities to work toward their goals.

"Representation matters. ... I really think that, growing up, if I would have had somebody like me on TV, or just in the arts or whatever, I wouldn't have been as scared. So, if I can do that for somebody, that's really important to me. ... I think it helps with empathy as well," she said.

"(If) I'm shopping for vegetables, you don't need to be inspired by that. You can be inspired by me going back to school and getting my degree and singing with 40% lung capacity. I think that is an accomplishment and that is inspirational. But me buying vegetables is not inspirational," she added with a chuckle.

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