I am disabled. I carry a sense of otherness due to my mental, emotional, and physical experiences. Like any othering experience, this affects my identity—who I am.
I would be lying if I said I wasn’t grieving. I didn’t want to be the person who spends their spare time in physical therapy, with doctors, on hold with insurance, and resting through fatigue. I wish I didn’t have to question whether I’m worthy of making art professionally because so much of my time is spent prioritizing these other important parts of my life and not practicing.
Coming to terms with being disabled is an ongoing process that started for me in the summer of 2019. I had a bad case of bronchitis with a cough that once managed to clear a whole train car. I was at a late-night free improvisation session at a summer festival, trying to connect with people, feeling like an outcast. The culmination of this improv session was unlike anything that most of us have heard. I led a large group of stressed musicians in crying, yelling, singing, stomping, playing, dancing, and feeling. My isolation gave way to a desperate call to feel heard and part of a community, and I couldn’t stop making noise. My body told me to stop playing my guitar, but I didn’t listen, and there were serious injury-related consequences because of it—yes, I dislocated ribs because I rocked out too hard.
Photo by Callum Skelton on Unsplash
After that night, my health fell like a late-stage game of Jenga. Taking walks now caused shooting pains up my legs. My ribcage was twisted and sore, causing bouts of breathlessness. Both of my hands flared up with tendonitis. All things that were previously numbed ached anew. After years of physical therapy to treat the symptoms, it was time to find doctors who could help me figure out the underlying cause.
This past June, sitting on a table at my specialist’s office, much like I had at many other appointments, I finally checked off enough boxes on a list of symptoms to receive a diagnosis. I have Ehlers Danlos Syndrome, and that is a truth that is still hard to admit. It is an inherited connective tissue disorder, where the collagen in my body is faulty. I am always in pain because my joints cannot support my body, and my bones subluxate and dislocate often. I wear braces on my neck, ankles, fingers, and wrists that I call my ever-growing exoskeleton. I am always prone to injury, always fatigued, always questioning and planning. This diagnosis—this label—barely begins to describe what my day-to-day experience is like.
One thing that does help to explain my daily life is the Social Model of Disability. When I first learned about this, it was the gateway to verbalizing my experiences. This model shows that “disabled” is not a bad word to be said only behind closed doors; instead, this model allows for “disabled” to be a good word that means community and mutual understanding for many like myself. This model also explains that quality of life for a disabled person is reduced due to social expectations and norms, rather than medically-explained dysfunction. Because society is set up with expectations that were built for abled people, disabled people are forced to assimilate into a culture not built for us, and thus a spectrum of privilege and marginalization arises, as we were never meant to succeed here. One’s disability has nothing to do with what’s “wrong” with them, but rather what’s wrong with the society around them.
I am disabled, so my music is disabled, too. It has extra room for breathing, just like I need. It moves faster at the ends of pieces when I need rest. It is loud and angry when I feel unheard. It is distant when I’m feeling fatigued. It is off-kilter when my joints are hurting. It is improvised when I feel that no one else’s music can come close to expressing what’s in my soul. It breaks from expectations—but that does not mean it’s bad music.
Being disabled should not mean that I am a failed musician, but it does to many. It means I practice less than my peers, rest more, and have less patience for time wasted. I am not lazy, useless, inefficient, unprofessional, unproductive, weak, making up excuses, or lacking in dedication. I am resilient, making noise in the most authentic and unbroken way I can.
Disabled people deserve to have a seat at the table, to be free of abled comparison, to create art that is emphatically disabled. As we seek out more diverse perspectives in the arts, we tend not to question why that diversity often excludes disability. Artists rely on networking as a means of currency, yet we don’t afford equitable opportunities for meeting people to countless disabled people who require accommodations to do so.
These accommodations include accessible spaces for those who use a mobility aid like a wheelchair or crutches, which means elevator and ramp access, enough room to navigate through crowds, and providing access information prior to your event. Within these accessible spaces, additional accommodations include, but are not limited to, interpreters for Deaf attendees, braille programs, captioning, room for standing and sitting, varied seating options, content warnings, bright un-flickering lighting, and trained knowledgeable staff. Most of all, it is vital to be proactive and to ask the disabled community what they need so they can participate in your event, and to leave space for answers.
As an audience member, I have tried to take care of myself by adjusting my position in a seat, standing in the back of the audience, or putting my head down when I’ve needed to ground myself, and I have been scolded by event coordinators and thrown out of numerous musical events because of it. Every time this happens, all I hear is, “You do not belong here.” And if I—as an artist in arts spaces—do not belong, then I am not sure who does. Every time I feel excluded, it leads me further away from the desire to introduce more people to the arts community. How can I ethically bring in more people with similar experiences to mine if I know the pain they will feel every time they are told, “You do not belong here?”
I could conclude here with a statement about how we need to combat stigma and recognize that there is a lack of support that must be fixed. But I want to outline a more concrete call to action.
I write this during a global pandemic, where accommodation is at the forefront of conversation. If we were to all go on with our days like we did before the pandemic, we would be causing harm to ourselves and the people we love. Instead, we are learning the ways of Zoom, of wearing masks, of livestreams—of accommodation. This way of thinking, of changing the system, is ingrained within the disabled community.
Photo by Yomex Owo on Unsplash
One system that must be changed is how we perceive other people’s actions and choices, and we can achieve this by presuming competence in everyone and allowing people their autonomy. In my Introduction to Psychology class that I’m currently taking, Professor Chaz Firestone began the course by asking that we meet each other with patience, understanding, generosity, and trust. It is revolutionary for a Professor to offer their students the chance to make mistakes and to own up to their circumstances.
We are perfect in our imperfections. Our imperfections are just differences in experience, and those differences should be recognized and appreciated.
In attempting to create more accessible spaces, it is your job to proactively account for diverse needs. By booking a performance at an accessible venue, you are giving voice and community to more people. By allowing students to be absent from your class without any repercussion or obligation for explanation, you are empowering your students to take care of their individual needs. By allowing someone to be late without punishment, you are telling them that their efforts to arrive are meaningful, and you are recognizing the work someone is putting toward their success. If you are in a position of power, it is your obligation to care for those who are not. Ideally, it is your obligation to care for all regardless of any power dynamic.
Growing up Jewish, I learned the power of engaging with mindfulness: the moment between action and reaction. I learned that when I was witness to someone’s actions that made me feel a rise of emotion, I should take a moment to breathe and meet them with care. If we all were to move forward prioritizing patience, understanding, generosity, and trust in our interactions with each other, our community could thrive.
Finally, to any artist who is disabled: You are inherently valuable, a gift to the world. Please continue to make your disabled art.
Thanks to Anicia Timberlake for helping me formulate my thoughts for this essay and to everyone who continues to help me find my voice.
I CARE IF YOU LISTEN is a program of the American Composers Forum, funded with generous donor and institutional support. A gift to ACF helps support the work of ICIYL. Editorial decisions are made at the sole discretion of the editor-in-chief. For more on ACF, visit the “At ACF” section or composersforum.org.