Grief, disability and a musical for people who can’t go to a theater
IT takes just listening to Suzanne Richard, Lisa Sniderman and Jessica Wallach speak for a few minutes to realize the project the women are working on is ambitious and unique. They describe it using phrases such as “disability justice,” “radical accessibility” and “a model for the metaverse.”
But the project started in a simple and universal way: with grief.
As Sniderman tells it, toward the beginning of the pandemic, it occurred to her that she had never grieved for how her disabilities changed her body and identity.
Sniderman, an artist and playwright who lives in California, was diagnosed in 2008 with the progressive muscle weakness disease dermatomyositis and later with a primary immune deficiency disease. Instead of allowing herself to focus on the losses that came with those conditions - the loss of health, the loss of abilities, the loss of the freedom to go out in public without risking illness she did what many people might do. She threw herself into her work.
“I realized only recently that I kept so busy creating that I had forgotten to grieve,” Sniderman told me on a recent morning. “That was a big thing for me to acknowledge.”
After that realization hit Sniderman, she created “The Grieving Project.” It started as a spoken-word musical audiobook that told the story of four people with four different disabilities going through the stages of grief. Sniderman based one character on her own experience and used her voice to tell that story. At one point, the character lies in a hospital bed, unable to move her muscles.
The project has evolved into an effort that involves artists in D.C., a robot that allows Sniderman to go where her body can’t, and a lot of excitement about what is possible when it comes to making immersive theatrical experiences available to people who are unable to leave their homes.
Sniderman has been working with Open Circle Theatre, a professional theater in D.C. dedicated to promoting the careers of disabled artists, to turn “The Grieving Project” into a multimedia musical that is rooted in “radical accessibility.”
If you are familiar with that phrase, then you understand the importance of what they are trying to achieve. If you are not familiar with that phrase, then it’s important to know that if they are successful, people with and without disabilities will benefit.
Radical accessibility calls for considering everyone’s needs, and the musical they hope to create will simultaneously serve people in the audience and people who couldn’t physically enter the theater.
“The idea is for everyone to experience it together in community,” Suzanne Richard, the artistic director of Open Circle Theatre, told me. “Not isolated, but in community, which is what I love about theater. It’s a group of people sitting together watching another group of people tell them a story.”
That sense of community gets lost, she said, when a person watches a production alone on a screen. The musical they plan to make will feature disabled artists onstage and off, offer captions that convey dialogue and describe scenes, and allow people who watch from home to control their own camera angles as they watch the live performances.
“If you get overwhelmed by close-up details you can back away,” said Jessica Wallach, who is the accessibility director of the project. “If you read lips, you can come in closer. It provides options for experiences to meet people where they are.”
She noted that the project is also grounded in radical accessibility in another way: the Lis Bot. That’s what Wallach and others calls the OhmniLabs robot that Sniderman has been using to join the team remotely. Her face appears on the screen and she can control where the robot goes, allowing her to see what others in the room see and participate in their conversations. (In a previous column, I shared with you how the International Spy Museum used a similar robot to allow children who were in hospitals to experience exhibits).
Richard recalled how in the past they propped a laptop on a chair to allow an artist who struggled to make it to rehearsals to participate remotely.
“She had no agency,” Richard said. “The computer would turn off and we would have no idea she missed 20 minutes of rehearsal.”
I spent a recent morning talking with Sniderman, Richard and Wallach about their work because in a region where there’s no shortage of ambitious endeavors, their project stood out as holding the potential to help people who could easily be forgotten.
It is also a project that comes not only with big goals, but also with a big cost that is far from covered. Sniderman said they had hoped to raise $110,000 before starting an artist residency program at the Voxel in Baltimore on Feb. 26, but in December, they lost a $50,000 grant. She has now created an online fundraising page through Indiegogo and Richard has started a GoFundMe page.
“We Need You to be a Part of This!” reads the page Richard created. “We’ve been furiously writing grants and building relationships, but it’s just not enough right now.”
Sniderman said if they are able to secure the funding and eventually produce the musical, one of her hopes for it goes beyond access. She hopes it helps other people who have forgotten to grieve a loss, whether it’s a loss of a limb, loss of a loved one or loss of some other kind.
At the center of the project is this question: “How can we live fully and thrive if we don’t grieve?”
“Grief and loss are universal, and the pandemic brought so much grief and loss to so many that I believe everyone can relate to this theme,” Sniderman said.
Wallach noted that too often when productions address disabilities those stories aim to inspire people without disabilities or stir pity. The musical won’t do that. “Nobody dies at the end. Nobody gets cured,” she said. Instead, she said, the stories will feel real.
She, Richard and Sniderman each shared with me what grieving has looked like for them.
“I started grieving my disability the first time my brother told me to run ahead and he would catch up so I wouldn’t slow him down when I was 5,” Wallach said. “I grieved my disability when kids called me the ‘R’ word, because I walked and talked differently growing up. I started to move through the early stages when I finally got a name for my disability my senior year of high school. I remember writing a poem that asked, ‘Did my body wrong me? Tell me, I cannot tell. I can only tell you I am beautiful.’ For me, living with a disability is not about wanting a different body, I don’t grieve that, I grieve people’s reactions to my body.”
Richard, who was born with brittle bones disease, identifies as a “little person” at 4 feet tall and uses a wheelchair to get around, said she never felt the need to grieve until she got older and could look back at her life more objectively. Then her experience involved coming to terms with other people’s perception of her. She went into acting, she said. “so that if you wanted to stare at me, you had to pay, and I controlled the narrative.”
Sniderman said working on that audiobook forced her to grieve because she had to relive experiences to write about them.
“On the one hand, it allowed me to start that process,” she said. “On the other, it is just scratching the surface.” — The Washington Post