Ehlers-Danlos Syndrome
Disability in the Arts
When I was about 10 years old, in rehearsals for a new musical at The Guthrie Theater in Minneapolis, I began experiencing pain in my feet, lower back, and shoulders. Why should a seemingly healthy 10-year-old be suffering the same ailments as some of her much older castmates? I had started showing symptoms of Ehlers-Danlos Syndrome.
So began my journey with disability. Awareness of this condition has since made enormous leaps forward, but here I am with an opportunity to share a bit about it in the hopes that someone out there might relate, make a discovery, or get a peek at what it means to be physically disabled in the performing arts.
So what exactly is Ehlers-Danlos Syndrome?
EDS is a bewildering illness that is the result of a gene mutation that causes the body to generate faulty collagen, which is the glue that holds the body together. Basically, our glue isn’t all that sticky. Symptoms vary widely from person to person, in fact there are currently 13 identified subtypes. Within my family runs the Hypermobility Type (HEDS), which causes hypermobile joints and chronic pain accompanied by symptoms such as nausea, migraines, muscle tension, joint dislocations and subluxations, TMJ, digestive tract issues and others.
Kennedy Center, VSA International Young Soloist Competition For Young Musicians With Disabilities, 2019
But Tori, you look totally healthy!
Yes, you’re absolutely right, and it is important to acknowledge that there is indeed privilege that accompanies having an invisible disability. Most of the time I get to appear able-bodied, an allowance I do not take lightly. But pain is a passenger I carry with me everywhere I go, onstage and off, and the invisible nature of EDS is as much a curse as it is a blessing. Suffering that cannot be seen is often misunderstood, which leaves the afflicted having to explain, convince, and apologize for our limitations.
I’ve struggled with how to present my condition in relation to my career because of the potential scrutiny of my capabilities. I have been advised by some to speak up and be a voice for my community, and by others to keep quiet to avoid “making demands”. Historically, this type of thinking may have been the best way to show professionalism, but it comes from a place of fear. I have learned, slowly, that the fear of how the world may view me cannot dictate how I let myself be seen.
In the opera world, particularly as a young artist, it is not always easy to ask for what you need. There is an overwhelming desire to be a low-maintenance performer. As my EDS evolves however, I am learning all the time that my self-advocacy is not for me alone but for all artists who require accommodation, understanding, or a couch to lay on between long rehearsals. The idea of prioritizing one’s health can get buried beneath the power dynamics and ambition that the music world fosters, and it isn’t hard to see why.
What now?
Now it is our job to allow space for people to ask for what they need so that the tremendous talents of countless artists with disabilities can be celebrated. And it may be as simple as a couch.
Lately I’ve grown to allow myself the privilege of stepping back and saying “Wow, I did that. And all with EDS.” I experience pain and disruptive symptoms almost constantly, but since the age of ten have never missed a single performance due to symptoms of Ehlers-Danlos Syndrome. But it is in no small part due to the support and understanding I’ve received from those whom I’ve asked for help.
