The Boy in the Moon moves beyond tears in story about raising a son with a severe disability
Director Chelsea Haberlin and her team drew on the real experiences of parents from the Rare Disease Foundation
Marcus Youssef and Meghan Gardiner star as parents Ian Brown and Joanna Schneller. Photo by Matt Reznek
The Cultch livestreams Neworld Theatre’s production of The Boy in the Moon from May 6 to 9
WHAT IF YOU had to stage a play where one of the main characters never physically appears?
That’s just one of the unique challenges of The Boy in the Moon, Emil Sher’s play based on Ian Brown’s moving and uncompromising 2010 book of the same name. Walker—who’s only seen in pictures—is the son of Brown and Johanna Schneller. The story deals with raising a child with a genetic mutation so rare that doctors call it an “orphan syndrome”—one that renders him nonverbal and profoundly delayed. And much of the play is about the search for the human inside someone unable to express himself. “Sometimes watching him,” Brown writes, “is like looking at the man in the moon – but you know there is actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me?”
In an interview with Stir, Neworld Theatre director Chelsea Haberlin, who is helming the livestreamed production at the Cultch, explains: “The whole family has been really clear about not putting words in his mouth. And so they don't guess at what he’s feeling and what's going on with him. They speak about their relationship with him from their own perspective. And really the piece is about trying to find the boy, the person, in the disability; trying to see the person through all the struggles he’s living with. And trying to understand if he’s really there. Because he's nonverbal—Ian describes him as being ‘nonrational’—it's hard to see if the choices he’s making are intentional.
“It’s very intimate and very personal and it's pretty specific,” she continues. “And so although he’s not there physically—which I think was a brilliant choice—you feel like you are seeing him and knowing him throughout the piece.”
Chelsea Haberlin
The Vancouver mounting stars actors Marcus Youssef and Meghan Gardiner as Walker’s parents, with Synthia Yusuf as his older sister Hayley. Sher’s play draws from the book as well as verbatim interviews with the family members.
This show has been a project years in the making. The script found its way to Neworld Theatre via a parent with the local Rare Disease Foundation (a group that’s partnered on this production). Haberlin, now artistic director at Neworld, remembers first reading it almost three years ago, with her newborn daughter wrapped cosily to her chest—a fact that made it all the more affecting.
“I wept a lot,” she admits. “And the reason I found it so moving is that the resilience of parents is incredible. Parents will do just about anything for their children and will go to any length to be able to be with their child, and see their child, and hold their child, and bring their child happiness and joy.”
But staging The Boy in the Moon was largely about moving beyond tears. From the opening scene’s description of the elaborate diaper- and feeding-tube routine that has become the norm for Brown in the middle of the night, the play treats its subject matter in the same straightforward and sometimes darkly humorous tone of the book.
That unsentimentalized approach became clearer as Haberlin and her team prepared for the play, originally scheduled for a live production just before it was postponed due to the COVID-19 shutdowns last spring. Pre-pandemic, they held workshops where they received direct input from parents from the Rare Disease Foundation.
“We came to understand that, if you live with a child with extraordinary needs, things that might sound difficult to parents with quote-unquote ‘normal’ children are no longer difficult to the same degree,” Haberlin explains. “So they are able to talk about things...that would seem incomprehensible to some of us. They can talk about it without too much sentimentality because it’s their quotidian. It’s their ‘daily’. So understanding that allowed us to approach this play without weeping through the whole thing. There are a lot of things in this play that make me feel like I want to cry. But the characters don't feel that way about a lot of these things anymore.”
During the workshops, parents who cared for severely disabled children had voiced a desire for the Neworld team to film the production, so it could be enjoyed by those unable to leave their homes due to their caregiving duties. Who knew that would soon become the case for all of us? At the time, though, Haberlin says, that seemed too far outside the theatre company’s wheelhouse. But the pandemic shift to livestream means The Boy in the Moon can now reach people via film. The added bonus, Haberlin adds, is the even more heightened intimacy and closeups that the cameras at the Cultch allow.
Drew Facey’s minimalist set design also draws heavily from the real experience of parents raising children with disabilities. In early conversations with families, they talked about the feeling that their home no longer felt like a domestic space, but more of a public space, because of visiting support workers, or a medical institution. “That really struck me: that my home can be private but maybe for someone with a child with a disease it isn’t anymore,” Haberlin observes. “So we wanted to create a clean, almost medical space.”
In the end, she says, audiences may be surprised at how much they can identify with in the journey of Ian Brown and his family. No matter how rare the disease of his child, or how life-altering the specifics are to his household, there are some lessons for anyone who’s had to make sacrifices for someone else, Haberlin argues.
“I think anyone who has an experience of caregiving can relate to this play, whether it’s an aging parent or someone who's unwell,” Haberlin says. “These are the brutal, uncomfortable truths about the challenges of being a caregiver.”
Related Articles
