You are an accomplished journalist whose work focuses on both music and disability. Can you share with us how you found your way to this work?
I came to my identity as an opera fan long before I started to identify as someone with disability, yet looking back on it they’ve always been connected. When I was 2 years old, I had massive back surgery to lessen spasticity, which lead to 4 months in rehab at the Rusk Institute in New York. While there, one of my caregivers, Judith, gave me a recording of Mozart’s opera, “The Magic Flute.” I have been an opera lover ever since. In opera, emotions are just so big and there’s real catharsis. It gave me an emotional outlet to come to terms with what I now realize was isolation related to my disability.
I had never felt comfortable discussing my cerebral palsy, but that changed when I joined a support group at the Weinberg Family Cerebral Palsy Center at Columbia Presbyterian. I finally found myself with a group of like-minded adults who also just to happen to have CP. I started going to Broadway shows with them and noticed how inaccessible the theaters really were. But with the onset of COVID-19, opera went digital, which meant that many of my disabled friends suddenly had greater access to opera and they would eagerly watch the live streams from the Metropolitan Opera. This changed my career path.
I studied musicology and journalism in college and grad school in an effort to become an opera critic, because I believed that since I couldn’t perform in the typical manner of many non-disabled people, my writing was the only way to have a voice in the field I love. Happily, now I can say I was wrong! I have been writing for New Mobility, covering the intersection between disability and performing arts. I also produced my first opera, Handel’s “Orlando,” with my friend Marianna Mott Newirth, who is now my business partner at Opera Praktikos.
Your passion for making music accessible for audiences and artists alike comes through in your role with Opera Praktikos. Can you share more about your role with the organization and how you’re creating a shift in the field?
Opera Praktikos is still a very young company, albeit one that has accomplished a lot. I have two major roles. As artistic director, I’m in charge of programming, which means I have to be very intentional about what we perform and I have designed our season with accessibility in mind. I am also chief development officer. What I truly enjoy about that role is not only the opportunity to get people genuinely excited about our mission, but also the chance to make tangible change happen. This past summer at the Opera America conference, Marianna and I led the first panel on how to make the opera feel more accessible to people with disabilities. As a disabled kid who went to the Metropolitan Opera, spearheading this conversation was the cherry on top.
As an advocate with a deep well of experience, what guidance do you have for disabled people seeking to become stronger advocates and storytellers?
Follow what you are passionate about and do something you love. That way, your excitement is palpable to others. If you get to know your field inside and out, at some point the structures that make it inaccessible will become apparent. Once this happens, you will know what your role is.
With so much happening in the world, what is your biggest disability rights priority?
Currently, my biggest disability rights priority is to make sure that people with disabilities always have places to hang out and connect. I’m really concerned that the lack of funding to places like Columbia Presbyterian has the potential to take away support groups and other programs that are necessary for people in the community to connect and thrive. In my experience, meeting other disabled people and forging friendships with them is a crucial part of coming into disabled identity and adulthood.
What sparks joy for you and sustains you even as you navigate challenging situations?
My friends and caregivers have really become my chosen family. They’ve helped me grow and learn more about myself and do things I never thought were possible. I say that in full recognition that it’s a hokey way of phrasing it, but it’s the truth. I love them dearly and I would be nothing without them. Also, I would be nothing without the button I have that makes a screaming goat noise. I highly recommend it to anyone navigating disability grief. Just state what’s upsetting you out loud and give the button a good whack. Do it a couple of times and I dare anyone to keep a straight face.