As reported by CNN
; Tabitha Haly still manages to make time for her life-long craft as a singer-songwriter and live performer while acting as a vice president at JP Morgan Chase, with the assistance of round-the-clock care from aids. For Haly, music’s a passion and a tool of emotional expression. It’s also a way for her to exercise her lungs and check on the status of her degenerative muscular condition, spinal muscular atrophy type 2
, which erodes her movement and respiration.
“If I can’t sing a certain note or hold it long anymore, I know that maybe I’ve gotten weaker,” Haly said to CNN.
She uses her music as a megaphone to share the difficult feelings of her disability, both using her personal challenges as inspiration for her lyrics, and talking to her audiences about the challenges and complexity of living with the many faces of physical disabilities at her live shows.
Spinal Muscular Atrophy
Spinal muscular atrophy
is a rare genetic condition that causes muscle weakness and degeneration. The disorder ranges in severity and age of onset. Most variations of the disorder are due to the SMN1 gene, which causes a loss of nerve cells in the spinal cord and brainstem. This causes difficulty walking, sitting up, controlling movement, and at times, swallowing. While supportive care includes physical therapy, bracing, tracheostomy, respiratory support, gastronomy, and surgery, there is no cure.
Living with Limited Mobility
Haly’s family learned she would be living with SMA when she was under a year old. The degeneration condition over time erodes a person’s movement of their muscles and respiration system. Her movement was stunted before it began— she has never walked, and she explained,
“When I was young, I used to be able to turn doorknobs.” Yet even that quickly became too much, and struggled with any basic tasks needed for mobility. “Over time, I couldn’t even lift my hand to even turn a knob,” she continued.
Today, Haly’s healthcare routine is extensive and intensive, requiring round-the-clock home health aids to provide 24 hours a day care. She has a range of therapists, occupational and physical, on her calendar regularly, and has her own daily routine, which includes sleeping with a ventilator and practicing exercises for her mobility.
Her Ambition, Hope, and Success
But what she lacks in mobility, she makes up for in good energy, ambition, and hope. Haly never held back. In 2006, she was honored with the highest distinction from Pace University, managing to continue her songwriting minoring in music, majoring in computer science, and emerging with another minor in mathematics.
She kept climbing as both a musician and career woman, acting as both one of the Vice Presidents of JP Morgan Chase, and as a singer and concert performer. Last year, she released her first full album, “I Wrote Life,” which discusses the life and feelings of a person with disabilities.
Her Musical Outlet
Before Haly was performing in front of live audiences, she was using it as an outlet of expression, after learning the magic of music at age 3 from her father. She took the complex emotions inspired by her disability and unique challenges, and let the intensity take her even deeper. She said,
“Whenever I feel really down about myself, like I can’t do something, I just start writing, then I sing about it.”
She also uses music as a disease tool, both strengthening her muscles, and acting as an indicator of her health. Changes in her vocal range provide her with clues about the state of her lungs, indicating a muscle weakness or an issue with respiration. The art also serves as a palette to unwind the complex emotional burden of her condition, which affects every dimension of life, causing a wide range of indescribable feelings and experiences. Haly said,
“I let out all these emotions and feel so much better.”
In her songwriting, she was able to harness her many experiences, find those powerful feelings, and express the struggles of living with a rare disease through tune and lyrics. She uses those themes in her work, aiming to create a message of empowerment and to convey the challenges of living with a physical disability. In her performances, she talks about life with limited mobility and the wide range of physical difficulties that have nothing to do with her wheelchair. Still, she explains why those burdens don’t prevent her being from being a full, complex, capable woman. In her first single, “I Am Able.”
she speaks back to harmful tropes, and why she should be measured for more. She relates the song to her own experiences, such as people staring at her in public or telling her that there are things she isn’t capable of.
“This particular song is a reminder saying I am able. I can help someone. I can be someone. I can be generous to someone. And most importantly, I can be loved like anyone else.”