A mother shares her boy with the world
Johanna Schneller wept watching play about her son, but not for the memories
Since 2007, writers Ian Brown and Johanna Schneller have been involved in a remarkable and bracing process of public self-exposure about their lives with their son Walker, who has a rare genetic mutation that renders him severely disabled.
Brown’s Globe and Mail articles about Walker became the awardwinning 2009 memoir The Boy in the Moon. A play of the same title, adapted from Brown’s book by Emil Sher, is now playing at Streetcar Crowsnest.
Although the articles and book are told in Brown’s precise, probing words, the play gives Schneller a voice and presence in the story.
Seeing the play with Schneller and talking to her about it afterwards as part of my occasional “At the Theatre With” series was not my idea but that of Crow’s Theatre’s tenacious publicist. For a long time, I resisted. I’m not a parent and I don’t have extended first-hand experience of someone who lives with disability. Being brought so close to Schneller’s life sounded painful and emotionally blinding, like looking at the sun.
It turns out that Schneller, like the show itself, is gentle, wry and astonishingly candid about her and her family’s experience. “Part of the reason why living with someone like Walker is hard is that people don’t talk about it,” she says. “Everyone feels like they have to . . . shame is too hard a word . . . but it’s like people can’t admit their weaknesses. Part of the telling of the story was that we were going to tell the truth of what it’s like and just put it out there.”
And so, along with laying out the challenges and rewards of raising Walker, whose condition, Cardiofaciocutaneous syndrome (CFC), means he can’t communicate with words, eat or use the toilet by himself, The Boy in the Moon reveals Brown and Schneller’s vulnerabilities and self-confessed failings as parents and spouses — as humans.
In the show, Schneller (played by Liisa Repo-Martell) says some frank things: Had she known Walker’s condition before he was born, she would have had an abortion. And, now, “If I could push a button I would trade Walker for the most ordinary kid who got Cs in school. I would trade him in an instant. Not for my sake or our sake but for his sake. I think Walker has a very, very hard life.”
In this production, the story moves expertly from the very precise details of Brown and Schneller’s lives to some big philosophical quandaries.
“What is the value of any life? His life is a particular life and it’s easy to ask those questions about it because it’s atypical,” Schneller says. “How many times do we need to keep telling ourselves that everyone experiences life differently and that we should be less judgmental and more empathic?”
The final 20 minutes of the play involve the actors addressing the audience about Brown’s and Schneller’s decision, a decade ago, to place Walker in a group home 40 minutes away from Toronto.
Schneller says can watch this part of the show at an emotional remove because it is much different now. “I remember Ian saying when he made the decision to start looking around that there are four people in the family and not just one person, and we have to think about all four of us. I do think that was very wise of him.”
Schneller and Brown saw a runthrough of the play in the rehearsal hall, but the final preview performance we attended was the first time they saw it in the theatre. Schneller warned Abraham and the rest of the production team that she expected to weep throughout the show and lived up to the promise.
But she wasn’t crying out of some form of traumatic recall: “It’s not about the memories for me. It’s about watching the actors engage with it so deeply and watching the story spread outward in these circles that started with us . . . I am very moved by that, that people see that and want to put it out there into the world.” At the Theatre With . . . is an occasional series in which Karen Fricker brings people with specialist perspectives to performances.