Stephanie Alma and Tommy Carroll

Souls above Water: Building a Scene for Disabled Musicians in Chicago

(listen to the essay, read by Stephanie Alma)

1. Individual Beginnings


From a very young age, my introduction to the world involved my father, Benjamin, and mother, Alma hosting big family parties with regional Mexican music flowing through our living room and backyard, not to mention delicious food and smells of birria and handmade tortillas, everyone singing and dancing together to the sound of the tuba and trumpets, so happy and proud.

My father came to the US from a small village in Jalisco, Mexico when he was sixteen years old and my mother was born in Chicago just months after my grandmother made it here from Durango. They were two loving working class parents who took advantage of their Saturday nights but woke up early for church on Sunday mornings.

Apart from my home, Catholic Churches and religious education became our family’s center for worship and my main center for music, rhythm, and poetry. Being legally blind, it was difficult to follow along with the preacher reading bible verses, so the hymns and musical components carried me through.
I remember coming home and telling my mother about a beautiful song I had heard a young Mexican girl singing at church. I sang the chorus to her “kukurukuku paloma, kukurukuku no llores.” I followed the way her voice spread through the church walls and imagined opening my eyes to see my mother’s shocked face. She asked me to sing it again, and I just kept singing from then on.

Despite not being religious today, I still appreciate the role that liturgical music, mariachi masses, and religious ceremonies have played in my musical career. Now, when I open my mouth to sing I sing with a purpose in mind the way I’ve heard Mexican vocalists from Vicente Fernandez, to Juan Gabriel and Amanda Miguel, to Selena sing throughout my life. When they sing you can feel that they have sacred lessons deeply rooted in the struggles of every day life they are trying to share with you.

Though I often do not get the chance to explain myself and default to saying I am a self-taught singer, I know I am not “self” taught because of all I learned from church and the Mexican singers I’ve listened to throughout my life. As a Mexican American disabled woman, I don’t write and sing because I feel I am highly skilled or have reached a high level of music education, which would somehow justify my music making. I sing and compose to keep my soul above water.


The rich textures and grooves of music attracted me to the art, but it’s the social component that made me dive in for life. I was born on the North Side of Chicago, but almost immediately my family moved out to the suburbs. It was partly my parents desire for space and quiet and partly their search for quality adaptive education for their blind son (me) that brought us to Glenview, IL.

Growing up, our social life mostly centered around sports and the outdoors. We had a driveway and a sleepy street we could bike and skate on, as well as a backyard big enough to hit wiffleballs without disturbing anyone, So, we pretty much spent our free time outside, which I think really helped me develop independence and confidence in my mobility. I loved sports, but it started to get tough when it was time to integrate with peers. No one would want to play with me for pickup games, and even when I continued with cross country and track at school, I felt I could never really bond with my teammates.

As my feelings of exclusion as an early teen grew in and outside of school, I dove deeper into my headphones. Though my mom’s disco albums and dad’s jazz fusion and roots rock records had already attracted me at a young age, I began finding metal and punk quite cathartic.

I had briefly taken piano lessons and heard my grandfather play organ in church, but nothing connected my love for the sound of music with the idea of actually creating it until I played a friend’s drum set. He was already playing with a band of kids in the neighborhood. He let me hop on the drums, showed me a simple beat, and then started playing a hard rock riff. Hearing and feeling the drums and the guitar melding in the air to create one massive sound was energizing in a way nothing else had ever felt.

I didn’t transition from sports to art overnight, but I did convince my dad to borrow a drum set from a friend. The drums had intermittent use until an older brother of a classmate asked me to play for a birthday party. All of a sudden I was an eighth grader playing with high schoolers. The next day at school people genuinely asked me about myself and drums instead of the usual strained conversation or doing the waving the hand in front of the face to see if I was actually blind thing. I knew I was beginning to find my place.

I took formal lessons on-and-off as a teenager, but I still attribute my most important learning about how to play in bands and how to serve the music to what I learned from friends who had already been playing from a young age—friends I wouldn’t have connected with if it wasn’t for music. After all those years, it’s really the people that music brings me into community with that keeps me interested. Getting an award or a grant never compares to getting a group of good folks together and bashing out some tunes or sophisticated improvisations, or both.

2. Minds Meet


Tommy and I would have never crossed paths if it weren’t for the Internet. In 2019, I had been releasing sonic poetry through my YouTube channel, one of the more accessible online platforms for me as an artist.

I had just graduated from college and was finally looking out from college textbooks and into the world. I wrote my first couple of songs, “VI Meditation”, “Hope You Read This On Time” , “Beautiful Little Blind Girl”, and “Sounds of Laughter” as a way of staring back and unapologetically saying “I’m here” .

I started posting videos in a group called Chicago Artists With Disabilities, where I encountered some of Tommy’s work for the first time. We were like fire and ice. I shared music that aimed to rip through the silence that we both had been shoved into, then scrolled down to see his post about an album called “Listening” and another, his sonic idea called “Don’t Fade.”


I always say I wish I could have met Stephanie earlier in life, but I suppose we actually met at the perfect time. We had both been admiring each other’s art from a far, but when we spent time together there were just some unspoken understandings about the world that bonded us tightly.

It was 2019 and I had already released three projects as a bandleader and had been / was performing with artists who I admired and who had even taken me on the road with them as their main drummer. I was becoming a confident creator, but still felt torn in a lot of ways.

The biggest tension for me was between being a bold disabled artist who actively championed disability culture in my music, like I did with my album Not Amazing, while trying to be an employable drummer known for skill alone. I’m still negotiating this balance, but working with Stephanie and getting to hear the nuanced way she thinks about disability and disability culture being whatever we choose to make them has untied so many knots in my mind and soul. Since knowing Stephanie, I’ve released two projects I’m very proud of: Dances for Different Bodies, a dance-music-based sonic tribute to disability culture, and Prosthetic, a jazz fussion excursion that remains rooted in my disability identity.

In this business it’s easy to get caught up in checking boxes and phoning it in to get the job done, but having such an incredible creative partner reminds me that it’s about so much more than the gigs and the checks, which in turn keeps the art fresh.

3. The Future

We’ve managed to develop a vibrant creative life together. We play in each other’s bands, collaborate with a growing group of musicians, perform in many types of spaces and teach workshops. We have now embarked on the adventure of curating and throwing local music events featuring primarily blind and visually impaired artists.

We’ve already hosted our music showcase in local bars and parks. We’re hoping to expand it into a twice-yearly festival celebrating Chicago music and disability culture.

We want to cultivate spaces that allow people in our community to exercise multifaceted ways of thought and action, because accessibility means something different for everyone and for every type of event. We are working to build systems and networks that solidify paths to artistic development and increased worth for disabled artists.

Stephanie is focused on how the work of disabled artists can become the focal point of future disability culture and music fests, while continuing to work on defining disability culture together. Tommy is working through the conundrum of how to increase professional opportunities for disabled musicians, while still increasing respect for music rooted in disability culture on its own terms. We look forward to meeting and collaborating with others who are guided by similar desires for collective expression.

“Disability Futures in the Arts” is supported by the Canada Council for the Arts/Conseil des arts du Canada.Logo for the Canada Council for the Arts/onseil des arts du Canada

Back to Top of Page | Back to Disability Futures in the Arts | Back to Volume 16, Issue 4 – Winter 2022

About the Author

Stephanie Alma is a Mexican-American singer, songwriter and poet. She leads the Spanish rock band Raro, sings in harmony group Femgrove and participates in various improvised music projects. Tommy Carroll is a drummer, composer and producer. He leads Calculated Discomfort, an eight-piece jazz collective, and Prosthetic, an improvised electric jazz fusion trio, in addition to performing and touring with many Chicago-based bands. Together, Tommy and Stephanie are artistic and life partners. They curate the Blind / Visually Impaired Music Showcase and work to promote creative music and disability culture on the local level. Their essay for “Disability Futures in the Arts” is their jointly-told story.