'Isn't it enough for art to be joyful?'

By Louise Kinross

Julia Gray describes her work as a post-doctoral fellow at Holland Bloorview as “the humanities reaching into rehab.” Julia trained as an artist, playwright and theatre director and did her PhD in education at the Ontario Institute for Studies in Education (OISE) at the University of Toronto. Before coming here she worked with Ontario rehab researchers to write and direct a play called Cracked—about how we stigmatize people with dementia. “The researchers were interested in what they termed ‘the discourse of tragedy’ around dementia,” Julia says. We talked about how a similar devaluation happens to people in the wider world of disability. 

BLOOM: How do you describe your research?

Julia Gray: I’m interested in thinking about what it means to be disabled and/or able-bodied, and how art-making comes into that conversation. For example, I’m working on a study about the therapeutic clowns.

BLOOM: I loved the research here that showed that children who can’t communicate conventionally respond at a physiological level to the clowns.

Julia Gray: Yes, research here and elsewhere shows tangible outcomes, but I’m interested in the art part. What techniques are the clowns using, and how does what they’re doing as artists link with those outcomes? What do kids with disabilities appreciate or value in that art part? This will be a pilot study where we observe 30 kids playing with the clowns, then debrief with the clowns on exactly what they were doing with the kids. We’re also hoping to interview three to five kids to ask them what is special about the clowns, and what helps them?

BLOOM: Why is there a need for this research?

Julia Gray: My research focuses on the humanistic side of disability and the humanistic side of care. As a critical researcher, I try to flip over assumptions that we have. For example, we often think art has therapeutic value—that it can help cure or fix something. And my thought is: ‘Really? Does it?’ Do we have to assume that it always has only medical outcomes? Can’t it just be part of being in the world? Isn’t it enough for art to be joyful? As humans, we create things and that includes art sometimes, and kids with disabilities do it, too.

Medical outcomes are like an awesome bonus. If a child’s anxiety or depression is reduced, or their functional movement is improved—awesome. But what about all of the other stuff we’re missing, like joy, expressing sadness, producing something, or playing?

BLOOM: It does seem like a lot of our outcome measures are related to function, not happiness.

Julia Gray: That’s rehab’s roots, and it makes sense that that’s the frame and the assumptions people bring to the work. We need to think beyond it. This is where my supervisor Barbara Gibson’s work is really critical in asking what the purpose of rehab is philosophically. How do we help people live their best life? What are the assumptions that we’re bringing about what we think a better life is? What are we valuing?

BLOOM: What do you love about working here?

Julia Gray: I really love working with my supervisor. Barb is genuinely interested in helping me learn things and build my skills. She has a wonderful balance between being genuinely kind and critiquing, challenging and pushing me in the most supportive way.

I also love the way Holland Bloorview is genuinely interested in improving the lives of kids with disabilities. Many clinical settings are not like that. Here, people are receptive to different ways of working and doing things. As an arts person, I feel people are genuinely curious about what I bring, in conversation with science. I’m humanities reaching into rehab.

BLOOM: What is most challenging?

Julia Gray: That cross-paradigmatic conversation!

BLOOM: Do you feel like you’re talking different languages?

Julia Gray: Completely. The ways things are measured, or your outputs as a researcher, are done in a different way. There are outputs that aren’t on the radar of scientific research—like artistic creation, which is a kind of exploration. We’re in the process of having a discussion about how do we value that in a scientific research institute? And what is it that is valued?

For example, a lot of humanities- and arts-related work will be published in journals that have a low impact factor. The impact is in concepts and ideas and criticizing cultural norms and assumptions, not objective research or technology. Of course, all of these things can impact services or how care is provided, but the impact is different. To try to assess humanities with a scientific impact factor is challenging. Barb and I, and lots of other qualitative and arts researchers, are working to find ways to value, frame and talk about qualitative work. But we want to have that conversation without trying to fit it into dominant forms or frames.

BLOOM: What did you do your PhD in and why?

Julia Gray: I did my PhD in education at OISE. In my practical work with health researchers, I felt I wanted the education degree to allow me to learn more about social sciences and qualitative research, since my background is as an artist.

BLOOM: Did you have experience with disability before coming here?

Julia Gray: Before coming here my research was in dementia, which is cognitive memory loss. As a teenager, I worked at a summer camp with kids with disabilities. I was a special-needs counsellor who worked to integrate kids with special needs into the program. The emphasis was on helping kids be kids.

BLOOM: How did your play Cracked come to be?

Julia Gray: I had worked on a previous play called After The Crash about brain injury, and one of the investigators told me there was a group of her colleagues interested in doing a play about dementia.

BLOOM: What did they hope to achieve with a play about dementia?

Julia Gray: They were interested in what they termed the ‘discourse of tragedy’ around dementia: That we value cognition so much that if you lose that, you’re devalued as a human being, and you could only be in the world in a negative, sad way.

They wanted to look at how assumptions about dementia being tragic affect how people are cared for, and the way long-term homes are built and run. They didn’t want to address policy alone, or only the way health care providers are trained, but to look underneath at cultural beliefs around stigma. Why do we have to assume that dementia is sad? It’s not to say it’s not difficult, but is it only sad? Why can't it also be about just being in the world, being in nature and enjoying the sunshine on your face?

BLOOM: What is the play about?

Julia Gray: It follows two characters who have dementia. With one character we see how her relationship with her children changes, and with the other we see how her relationship with her partner changes. We see both characters move from the initial diagnosis through to their life in long-term care.

Part of what we see is the way these characters thrive in their lives. We see them join a political activist group and work with their MP to develop a national dementia strategy. We see one move into long-term care and make new friends. So the care home isn’t just this dour, cavern of death. It’s vibrant, and the character grows and learns, which is not what we expect to see.

We see that the things that are causing this character to shrink are not related to her disease, but to the assumptions people bring, and the way people stigmatize her. Every single scene in the play, except for one, is based on stories we’ve heard from people living with dementia and their families and clinicians.

BLOOM: Where was the play seen?

Julia Gray: We’ve toured it to many conferences, long-term care homes and community settings. Several performances were for the general public. It was also filmed and is available on DVD.

BLOOM: So you were trying to tackle stigma on a broad scale?

Julia Gray: We wanted to look at the broad, underlying assumptions we have about memory loss, and how they manifest in the ways we stigmatize people with dementia. We wanted to show that life could be different, that full lives are possible.

BLOOM: Is this a model we could use here at Holland Bloorview?

Julia Gray: It is a model we could use with disability stigma. Social justice and reducing stigma are right in our strategic plan, and the arts are fundamental to addressing assumptions that we don’t even know we have. We assume that something is a normal way of seeing the world—but why? And how is this thought or assumption possibly harming people? Art can provide that kind of insight, in a way that being lectured to about 'not stigmatizing' can’t.

BLOOM: What did you learn from your work on Cracked?

Julia Gray: It’s very easy to get caught up in what it means to live a good life and to be successful. I’m always challenging myself to be aware of my own assumptions about what that means, and to reflect on assumptions that I bring to my work. It’s a constant. You never know enough. I learned that any social justice or anti-stigma work is about relationships—it’s not about you. It’s about listening and acting and doing things in ways that are as supportive as possible for everybody.

BLOOM: Did doing the play change how you feel about diagnosed with dementia yourself?

Julia Gray: Hugely. I thought a lot about it. The thing that scares me the most isn’t having dementia, but the way people will treat me, and going into care. I know I can live a good life. It’s whether other people will make assumptions about me, and treat me poorly when I’m completely reliant on them.

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At London's Chickenshed theatre, 'there are no labels'

By Louise Kinross

Chickenshed is a vibrant British theatre company that does professional plays and musicals, high school and university education, children’s programs and outreach in schools, prisons and hospitals. Its current show on climate change—Don’t Stop Thinking About Tomorrow—has a cast of nearly 200. What makes the London company unique is it celebrates diversity. About half of its members have disabilities or are considered vulnerable in some way.

Two years ago, Lou Stein became Chickenshed’s artistic director. Lou is a London-based theatre director who founded the famous Gate Theatre in Notting Hill, and has directed numerous plays in London’s West End and for the BBC. He learned about Chickenshed when his son Ethan, 11, who has Down syndrome, began taking acting workshops there. Lou is married to Deirdre Gribbin, a Northern Irish composer who worked at Holland Bloorview in 2014 to bring sound to ScreenPlay, our interactive waiting room. I met this amazing family then. Lou and I spoke about what inclusion means at Chickenshed.

BLOOM: You say Chickenshed has inclusion at its heart. 

Lou Stein: The centre of our culture and ethos is that there are no labels. In other words, if someone walks through the door, whether an audience member or staff member, everyone works with one another. A significant number of our constituency has additional needs, or some form of intellectual or physical disability. The company tends not to call it disability, because of the word’s perceived negative connotation.

BLOOM: That’s so interesting, because there’s a campaign by North American advocates to get people to use the word ‘disabled.’ They see disability as an inherent part of who they are and something to be proud of. 

Lou Stein: I’d like to read more about that. You won’t see the word disability in any of the Chickenshed brochures, because of our policy of not labelling. As a father of a boy with Down syndrome, I have a somewhat different perspective in relation to using the word. I personally like people seeing the difference. It is part of who my son is. I'm encouraging a debate within Chickenshed about that part of our culture, which I think is healthy.

We have 20 to 30 young people, ranging in age from seven to young adults, who have Down syndrome. We have people with cerebral palsy. Some can get out of their chair, and some have very limited mobility, but they join in our courses and shows. We have all kinds of global disabilities. We have people who are blind or can’t hear well, or not at all. At Christmas, all of our 60-plus shows are signed.

BLOOM: Wow! I read that you had sign-language interpreters at shows, but you’re saying the actors speak and sign at the same time during the performance? 

Lou Stein: Absolutely. The actors in our big shows learn to sign and the audience accepts it. But it would be incorrect to call us a theatre company that works solely with people with disabilities, because the whole point of Chickenshed is that all kinds of people are part of the group. We mean diversity in the widest sense. So we have children who live in foster homes, or who have mental health issues—all types of diverse young people.

I can tell you stories of people who were beat up by their parents, and turfed out in the street, and they worked with us. And on the other side, rich North London Jewish kids who want to work with us. We’ve had black kids from bad neighbourhoods in London, who were subjected to knife crime. It’s that combination that is so exciting.

Although we do have a huge number of disabled people, it’s that kind of mixture of care for one another, in a mixed group, that is Chickenshed’s strength.

BLOOM: How does inclusion make your shows better, or different, than they would be without? 

Lou Stein: The way we work, every individual changes a production. If you were to come and be in a show, the production would change. Whether you’re disabled, black, Puerto Rican, whether you’re a professional or an amateur actor, what we do is use the differences that people bring and celebrate them, rather than making that person into something they’re not.

I come from the professional directing world, and one of the exciting things for me is we have a professional arm with shows that are reviewed professionally, so the quality is judged externally as well as internally.

In our spring production of One Flew Over The Cuckoo’s Nest, one third of the inmates have cognitive difficulties. They’re actors, they’re not playing themselves. So it’s interesting to see the play through their eyes, rather than casting an actor who is pretending to be in a mental institution. They bring a new way of looking at the parts. It’s a completely different thing. They’re able to bring their filter and lens to the art.

BLOOM: It seems like any diversity would add more to a show because it creates more opportunities for different ways of seeing things. 

Lou Stein: That’s the centre of the power. Even in the West End here and in other professional theatres, it’s a big deal when they cast someone with a disability. There’s more and more of it happening now, as if ‘Wow, aren’t we being inclusive?’

What they’re forgetting is what that amazing person brings to the production as a person. It’s important to remember that if Ethan is in a little group doing a scene in the Christmas show, he completely changes the nature of the show, as would your son Ben, or yourself, or anyone.

BLOOM: I’m thinking of the current play Amy and the Orphans in New York, which stars Jamie Brewer, who has Down syndrome. There were lots of stories in the New York Times about how it was the first time a person with Down syndrome had played a lead role. 

Lou Stein: Yes. It’s the same when you see someone with Down syndrome on a catwalk. It’s this idea that you have to be this brilliant, one-off performer. Ethan may not play Othello, or model, but that doesn’t mean he doesn’t bring something to whatever social situation or performance he’s involved with.

There was a lot of controversy here about why they didn’t cast an actor with autism in 'The Curious Incident of the Dog in the Night-Time.' I asked producers behind the production about it. They said they wanted to, but it would take too much time to rehearse them.

I said why didn’t you create the time, because that would have been so brilliant. I can tell you right now that we can do that play, and I have a dozen actors with autism that can do that role. It’s giving people a little time. It’s getting them into the process.

BLOOM: What is the greatest challenge of being inclusive? 

Lou Stein: I think the biggest challenge is keeping myself aware—of not labelling, of not putting limits on people, and actually listening to people. It’s taking the time to listen to what people who are seeing things through different lenses can offer you. It’s leaving your ego at the door. It’s realizing how much all of these people can give you in a production and personally. The most difficult thing is keeping yourself fresh and open. 

I have a story related to my son Ethan. Ethan has Down syndrome. He’s great and he’s confident and smart, but in a social situation with someone he doesn’t know, he can kick out, or he can turn inwardly into himself.

We’re used to people saying ‘Oh, aren’t you lucky that Ethan is around mainstream kids. Isn’t that fantastic?’

One time before I was artistic director, one of the Chickenshed group leaders said ‘I have to tell you something about Ethan. This term there was a child of about 14 who was going through a terrible home situation and was feeling very low. That child was in Ethan’s group. And Ethan demonstrated such empathy and understanding, and made him so happy, that he pulled through.’ That was the first time anyone saw the other side of what Ethan can positively do for other people.

BLOOM: Beautiful. I was surprised to hear that Chickenshed was over 40 years old. Did it always include people with disabilities? 

Lou Stein: Our founder, Mary Ward, was a drama primary school teacher. Her professional partner was a musician, and they started doing Shakespeare in the ‘70s in a shed on a big estate. Someone lent them the shed and they were doing it with the neighbourhood kids.

They put a notice up saying all were welcome, and someone rolled up in a wheelchair. Mary said she thought ‘What do we do now?’ They decided let’s work with this, and that’s the seed of the idea. It’s not that we’re including people, but they’re actually teaching us. That is the cornerstone of the company.

BLOOM: I read that you need to raise about $3.5 million dollars a year to fund Chickenshed. How do you do that?

Lou Stein: We do it through gala performances, sponsors and ticket sales. A lot of the people who come to fundraising galas are people who have been connected with Chickenshed over the years. And quite a few of them are very wealthy people. Our education arm gets government support.

BLOOM: I noticed that you have a program called Young Creators that is free.

Lou Stein: It’s for young people 14 and up who are interested in some aspect of theatre—be it writing or lighting or directing, and they meet with mentors.

BLOOM: How many staff do you have?

Lou Stein: We have 106 people working for us. In April we’re sending a contingent of 15 people to New York to start a Chickenshed in New York City.

BLOOM: I wish you would start a Canadian one. 

Lou Stein: It all depends on a person of influence who can make it happen. Someone who has the connections with the schools and the performing arts centres to do it.

We have an American Friends of Chickenshed branch. One of them came up with a plan and arranged for someone to underwrite 15 of our people to go into New York schools to demonstrate how our processes and performances might work in a New York City context. The hope is that a satellite chicken shed starts up. We train in the process of how we do it, then hand it over.

We also have a Chickenshed in China, where a social worker became interested in us. We went out two years ago to show our processes and do performances, and they started their own shed. What we want to do is let people learn the concepts and processes and give it over to them.

BLOOM: Has anyone done a documentary about how Chickenshed works?

Lou Stein: We’d love to get a broadcaster or filmmaker interested in doing a serious documentary where the person would come and work with us. It’s very hard to describe in one paragraph what we are, because we’re a professional theatre company and a school and we do outreach. In a way, the professional company is our window that gets new people interested in us, and it involves all of our constituents. But telling a story of how all of our parts link together would be brilliant. 

Photo below is of Lou Stein with his son Ethan.

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'It's not just for Joey, it's for a better world'

By Louise Kinross

British director Stephen Unwin is set to direct his new play All Our Children—about a German clinic in 1941 that sends disabled children to their death as part of the Nazis' killing program. BLOOM interviewed Stephen in 2013 about his role directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. Both plays strike close to home because Stephen’s son Joey, 20, has intractable epilepsy, severe learning disabilities and no speech. All Our Children will run April 26 to June 3 at the Jermyn St. Theatre in London. Stephen recently became chair of KIDS, a British charity that provides services to young people with disabilities from birth to age 25. BLOOM spoke to Stephen about All Our Children.

BLOOM: Why did you decide to write this play?

Stephen Unwin: My mom is German Jewish. She was born Jewish in Nazi Germany and came to Britain at age three. So at the back of my mind the Holocaust was always something in the environment. I read a huge number of books about that period and how that catastrophe happened. I was brought up Catholic in Britain, and although I’m an atheist who believes in science, I do have some respect for what the best of the religion Catholicism does when it tries to help the vulnerable. I was reading a book about the Third Reich and I came across something about a bishop who had opposed the murder of the disabled. It struck a chord in me. I thought this is so interesting because it brought together my German Jewish background, my Catholic background and the issues I face with my son Joey.

BLOOM: What is the play about?

Stephen Unwin: It’s set in a pediatric clinic for disabled children in 1941. Before the Nazis, the clinic tried to house and help the profoundly disabled. With the implementation of the eugenics program,  a number of the kids were taken each week by bus to Hadamar, one of the killing centres.

The clinic is run by a pediatrician in his 50s who’s dealing with a world gone completely mad. He thinks he’s a doctor not a murderer. He has a maid who’s a Catholic with three children. She doesn’t know the clinic children are being murdered, but she’s glad her kids are ‘normal.’ 

There’s a Nazi administrator who’s 22, who views disabled people as disgusting, and the mother of one of the disabled children. The mother turns up in Act 1 to thank the doctor for looking after her child so well, and then in Act 2 comes back with a letter saying her child has died. She’s the emotional punch of the play. She’s feeling her way to realizing what's happening.

The other character was a real person, the Catholic Bishop of Münster, Clemens August Graf von Galen. He belonged to one of the oldest aristocratic families in Germany. He was one of the real heroes in the battle for the rights of the disabled. He impressively comes up with sermons in which he says ‘You cannot kill the most vulnerable. These people are our brothers and sisters.’ 

At the end, the mother discovers what's happening and she says ‘They are all our children, there’s nothing special, they’re just children,’ which is what I think. We have to move beyond the normal and abnormal characterization. And what I really feel is that the religious come up with an answer of sorts, and those of us who aren’t religious need to find our own version of that answer. This is a philosophical play talking about how do we secure our moral foundations?

The main defense of the Nazis was ‘these people are too expensive.’ I sometimes find myself talking to myself about Joey, and yes, he’s really expensive, and will never earn any money or pay tax, but that’s, I guess, why you and I pay tax. So that when people have a disability like Joey, or develop dementia or lung cancer, we have a responsibility to these people with extreme vulnerability.

The play is quite particular, in that it’s got a bit of atmosphere about that terrible, dark place, but I actually hope and want it to speak to now. Not to say that disabled kids are being treated like that, they’re not. It’s a different set of issues, but some of the thinking is parallel. I actually touch on the philosopher Peter Singer’s writing, his idea that my dog has as many abilities as one of your profoundly disabled children, so why do we give the child rights when we don’t give the dog rights? And some of the Nazi thinking resonates with what we’re hearing today in the U.K. about disabled people being scroungers, that they’re not really disabled.

BLOOM: What is it like to be recreating a time when your own child would have been killed because of his disability?

Stephen Unwin: People who know Joey will recognize some of Joey in the child, Stephan, in the play. I wanted to bring a kind of reality to it. There’s a moment when the doctor signs off on 30 kids being taken away to be killed, and he looks at each piece of paper with a photograph and says ‘yes,’ tick, tick, tick, and then ‘no, he’s not ready yet.’ I want an audience to remember and feel that this is an individual, not a category, and to do that I need to think about my son Joey in that situation.

The Nazis used to talk about how these were mercy killings, and that anyway, the child wouldn’t know what was happening. It’s a terrible truth to say this, but if Joey was put into one of those buses and taken off he wouldn’t know what was happening, and he wouldn’t even be scared, because he likes buses. That’s the truth, and we have to bear witness to this extreme vulnerability and we absolutely have a responsibility to these people.

I got fed up with the narrative in disability, and in disability dramas like The Curious Incident of the Dog in the Night-Time, of ‘don’t worry, these people are mathematical geniuses.’ That narrative of consolation has dangers, and is as dangerous as a narrative of catastrophe. These are real people. Joey isn’t a metaphor. The disabled were taken as a metaphor for everything Germany hated – weakness, vulnerability and ‘ugliness’—and it has to be done away with.

I’ll probably cry a lot in rehearsals, but I’ve been working in the theatre for 35 years, so it’s not like someone doing it for the first time.

BLOOM: I know that sometimes I find it emotionally exhausting to write about some of the popular thinking about disability. I just wrote a piece about Peter Singer’s latest writing.

Stephen Unwin: It is emotionally exhausting. But the way my brain works, it’s part of clarifying what I think. I’m trying to understand what the issues are, trying to work it all out. And working it carefully out is weirdly, for me, part of recognizing and accepting and acknowledging the challenges. I live a life full of books and words and ideas, and then there’s Joey, who isn’t books and words and ideas. And I want to find a way of bringing those two things together. I think it’s our duty. I feel Joey needs a spokesman and in all the complicated ways I exist, I feel a real duty to be his spokesman. And it’s not just for Joey, it’s for the other kids like Joey. Some of those kids have parents who don’t have English as a first language. It’s not just for Joey, it’s for a better world.

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Dress rehearsal

By Louise Kinross

My son is taking part in an interactive play called What Dream It Was at the Miles Nadal Jewish Community Centre this weekend. He is the flying jokester (above), one of the creatures in a magical forest inspired by Shakespeare's A Midsummer Night's Dream. He will be part of a shadow performance and lantern parade, assist at the potion-making station and sneak around to stick messages on people's backs (the jokester part). 

This is a fabulous arts program that was provided free to participants aged 18 to 30.

It's a partnership between the Ahuri Theatre, the Bottom's Dream Collective and Miles Nadal JCC. 

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A play, an alphabet board, a new voice

This Is The Point is a play about two couples: a man and woman who have cerebral palsy, and a man and woman who have a child with cerebral palsy. One of the actors uses a head pointer to communicate with an alphabet board. “The play is about love, sex and disability,” says Dan Watson, a co-writer and actor whose son Bruno, 7, has cerebral palsy. He co-leads Ahuri Theatre, which is producing the play with The Theatre Centre. “The themes we circle around are love, parenthood, communication and acceptance.” BLOOM interviewed Dan to learn more.

BLOOM: Tell us about Ahuri Theatre.

Dan Watson: It was formed by me and a few other people who went to school together in France. We did a lot of physical theatre there. We worked with mask and clown and mime and tragedy. Ahuri works in Japan and Canada. We’ve done a lot of shows that incorporate different languages. When we write, we write on our feet, not sitting at a computer. We get in a space and we do improvisation and the script comes at the end. This Is The Point evolved more out of my personal life. Our older son Bruno is non-verbal and I wanted to do something that looked at language that went beyond words.

BLOOM: I'd love to hear more about Bruno.

Dan Watson: Bruno really likes rough-housing, loud music, wrestling, and going fast. His brother Ralph is four, and the two of them have fun running around with Bruno in his walker and Ralph on his bike. To communicate, he may look at things he wants, or vocalize or gesture with his arms. He uses an eye-gaze system and some low-tech tools like a communication book. We want to find a way for him to consistently advocate for himself—not just by saying ‘no,’ but by actively saying ‘I want to do this.’

BLOOM: In This Is The Point, one of the characters has cerebral palsy and uses a head pointer and alphabet board to communicate. Why did you want to do this play?

Dan Watson: Tony Diamanti is the actor who is non-verbal and uses a chair. We met Tony through another project called What Dream It Was. We invited him to work on that, but he said he wanted to do his own play and he sent us a play. I was struck by his voice, his sense of humour, his passion and his wanting to share his sexual experiences and to make sure that people know that people with disabilities are sexual human beings that live very full lives. I think a lot of people in the general public don’t see someone who looks like Tony that way. I thought this is exactly the kind of opportunity that I want to make happen. If Bruno was older and wanted to do this, this is something I’d hope someone would take on and work with him on.

I didn’t know where it would go, but we started to work on this play. We wanted all four of us to be on stage.

BLOOM: So in addition to you and Tony, there is Liz MacDougall, who is Tony’s partner in real life, and Christina Serra, who is your partner? 

Dan Watson: Yes. At first we tried to make the play the way you usually do. It was very physical, with scenes and blackouts. But it wasn’t working for Tony. We were trying to fit him in to something that wasn’t going along with the way he communicates and lives. So we started to have Tony communicate the stories himself, but then we didn’t fit in. We’ve come to something where we talk in the show and we talk with the audience and we also jump into scenes that are re-enactment scenes. By the nature of who we are, these scenes all have connection to disability.

A lot of the stories we share are, for lack of a better term, trying to normalize in a certain way disability—and sharing our lives, rather than lecturing or trying to teach people. We model the way we work together so we don’t hide the transitions that take a long time. It takes a long time to get set up and there’s nothing wrong with that, whereas we live in a society that is obsessed with speed. We’re asking people to stop and slow down and be with us and to feel that that’s okay. It takes Tony a long time to communicate because we have him talking directly to the audience and the audience has to read along with him.

BLOOM: In a trailer for the play, Christina makes a comment about how we’re not as inclusive as we think we are. Then she says: ‘You don’t know about disability until you’re opened up into that world.’ It seems like your play might be giving people an immersive experience into that world.

Dan Watson: That might just be the thing we want to have happen to an audience. When people encounter disability, it can bring up a lot of different feelings, and some uncomfortable ones. What we want to do is share and open them up to that world and show them that it’s okay that people with disabilities live all different kinds of ways. Just like anyone, they have struggles and happy moments.

BLOOM: I found it very interesting what you said about speed. Our culture glorifies speed. This is something I’ve been aware of because my son has a number of physical disabilities and he can’t move quickly.

Dan Watson: We were initially trying to fit the play into a form that was about speed. We need to move onto the next scene, keep it going, keep the energy up. Then we realized that’s not what this group is bringing, and slowing down is not a bad thing. That’s when things opened up for us. We presented it a couple of times and audience members say they feel at ease and there’s a real casualness to the show. We’re welcoming them and opening them up into our world for a moment.

Of course this is part of a bigger conversation. I don’t have any visions of everyone coming away from the show knowing everything about disability, nor do I want that. We’re just sharing our lives and our perspectives. I do hope they go away and take us with them, and that maybe we pop up into their heads in their daily lives when they need us—perhaps even when they’re encountering people who don’t have disabilities but who are different.

BLOOM: Did you have experience with disability before Bruno was born?

Dan Watson: No. I don’t think I even knew what cerebral palsy was before Bruno was born. His life has opened me up into a whole different community. I have these memories of being in school and kids with disabilities were in chairs on one side of the playground watching us. And I look back and think ‘Oh my god,’ I didn’t even think about them.

BLOOM: Have your thoughts about disability evolved?

Dan Watson: Yes, and with this show too. At first we were focused on the way Tony communicates. When I see people encounter him it’s a bit of a novelty—they’ve never seen something like that before. Then Tony says: ‘Pay attention to what I’m saying, not how I’m saying it.’ Over the course of working on this show in a funny way disability is less of an issue. The differences aren’t so apparent to me anymore. Tony is who he is and it’s only when I see other people encounter him that I go ‘Oh yea, Tony is non-verbal, yet I forgot in a funny way.’

BLOOM: I think having a child who doesn’t speak conventionally is challenging because verbal speech is so prized in our culture.

Dan Watson: It is really hard. There’s constant pressure from outside in terms of how Bruno interacts with people. There’s a scene in the show where I’m on the playground and that’s always a big challenge because Bruno and I go to the park all the time. We go on the accessible swing and I’m always having to negotiate with kids who want to be on the swing. And explain to them who Bruno is and why he can’t go on the other swings. You have to be this advocate and do all this explaining when you just want to hang out on the swing. Then you also wonder—what does Bruno think? I’m sure he knows this is going on.

We were just talking this morning about subtle communication things that you know with your child that other people don’t know. You probably see this with Ben. It’s hard when you can see what’s going on but others can’t seem to see it.

BLOOM: What’s been the greatest challenge of producing this show? Was it altering it from a traditional format?

Dan Watson: Yes. But that’s also the artistic—that’s what artists need to do is push beyond what they know, and that includes disability but also how you make things work. Usually people who don’t have disabilities are cast as characters with disabilities. That’s because it’s easier for the show—and the way the show is done.

But if you take a step back and say no, we’re working with people who are differently abled on stage, there are a lot of opportunities that present themselves. That’s really exciting as an artist. Instead of doing it the same old way you’ve always done it, it can generate amazing, different work that you’ve never seen anywhere else. It’s all about who’s in the room. Sometimes that’s a challenge—it’s taken a long time for us and trying different things. But the challenge is actually part of the reward, as well as what’s really engaging.

This Is The Point runs from Nov. 4 to 20. Book your tickets here. Photo below of Dan Watson, Christina Serra with their children Ralph and Bruno. 

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'I love the boy to pieces and I'm grief-stricken'

Here's a sneak peek at part of an interview we're running in the summer issue of BLOOM. It's with acclaimed British director Stephen Unwin.

Unwin is directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. The play, at the Liverpool Playhouse and then the Rose Theatre in London, strikes close to home because Stephen’s son Joey, 16 (above left, with sister Bea), has severe epilepsy, an intellectual disability, and no speech.

BLOOM: What is A Day in the Death of Joe Egg about?

Stephen Unwin: It’s a brilliant black comedy about how a married couple deals with being parents of a child who is profoundly disabled—both physically and intellectually.

Little Josephine is 11 and has cerebral palsy, sits in a wheelchair, has no speech, very limited capacity and suffers from epilepsy. It’s a weird comedy, which was such a hit in the 1960s, that describes the full range of emotions of parents and families of profoundly disabled children.

It ranges from jokes to despair to hard work to fantasy, to the parents having differences of views, to guilt, and the perspectives of other people. The grandmother goes around saying: ‘Wouldn’t she be lovely if she was running about?’ And somehow Peter Nichols makes sense of this extraordinary comedy.

It’s not funny in a simplistic way, but in a way that makes you howl. One of the things I like about the play is that it’s not moralistically or idealistically saying ‘We are all so happy to have these disabled children.’ Nor is it saying ‘It’s only a tragedy.’ The mother gains meaning through being Joe’s mother.

BLOOM: I’ve used black humour to cope with extreme situations. But will an audience with no experience with disability understand the humour in the same way you or I would?

Stephen Unwin: None of the actors have experience parenting disabled kids, so one of the things I had to do is show them how the child is just a child.

People tend to have two responses to serious disability: one is terror and the other is optimistic reverence, and you and I know that neither is helpful.

The only answer is reality: ‘Yea, this is what the kid is like, and this is what caring is like.’ It’s nothing to be scared about, but I don’t buy the idea that ‘This is a blessing from God.’ That’s bullshit. Nor is it a punishment. I think it’s just part of reality and the only answer is acknowledging the reality.

BLOOM: What kind of things did you explain to the actors about parenting disabled children?

Stephen Unwin: The child in the play goes to a day centre and the mom discovers that they haven’t changed her diaper all day. I was trying to explain what that’s like to the actress who plays the mom. She has young children, she knows what it’s like to change nappies on a one-year-old, but working out whether an 11-year-old has wet themselves? It’s quite hard physical work. But it’s what you do every day of your life and you’re not squeamish about it.

I’d explain what it’s like to give epilepsy medicine to a child who’s shaking, and you go ‘Shit, it’s gone all over the place,’ and you start again.

I try to show people what they take for granted. For example, when Joe has a seizure in the play they would all jump up to deal with it. No, I said, it’s not like that. This has been happening every day for 11 years, so it’s a different rhythm.

I remind actors of the reality of the situation because I have a parallel experience. But it’s not about my Joey. My Joey runs around and bounces and in many ways is healthy. It’s about Peter Nichols’ child with profound cerebral palsy, who died.

BLOOM: In The Guardian you wrote about your son’s 16th birthday—cake, candles, presents and early to bed—which isn’t what you’d expect with a typical teenager. But do you think we project our own sorrow on to our kids—our own wish that life was different for them—when from their perspective, they’re experiencing something in a rich way?

Stephen Unwin: I think that’s right. But I don’t want to have my grief invalidated by anybody.

I think there’s a sort of pressure on parents of disabled kids to be marvellous, and I howl about it sometimes. I find it really fucking hard. I was brought up with language. I had a really old-fashioned English classical education. I’m over-educated, language is everything for me and I’m dealing with a son who has no speech.

I love the boy to pieces and I’m grief stricken and that’s not a contradiction, that’s real. Both are true and I feel really passionately that parents have to be allowed to have that range of emotions. This is the ultimate rollercoaster.

Sometimes it’s absolute bliss and sometimes I feel a great big hole inside, I feel hollow inside.

BLOOM: What have you learned from Joey’s lack of speech?

Stephen Unwin: That there’s something beyond words. But that to me is a very challenging thing to have to understand because I write books and I direct Shakespeare and I’m completely classical about language.

If I had a son who couldn’t play football or fix a car, I’d say: ‘Oh well, I can’t play football, I can’t do any of that manly stuff.’ I can write and I read and read and read and I work on language all the time. So seeing that there is communication beyond language has been the biggest journey for me, and it’s about as far away as what I was programmed to do. It’s a difficult place to get to.

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Play about Down syndrome extended

Last Friday, I was lucky enough to see Judith Thompson’s play RARE staged in Toronto. It was equal parts hilarious and uplifting, moving and devastating. Through their stories, the actors’ voices and experiences came alive onstage.  Photo by John Gundy.

-Megan

RARE, a Toronto Fringe Festival play starring nine adult actors with Down syndrome, will return briefly to the stage in August. After being staged in July as a part of the regular Fringe Festival, the show has been selected as one of eight best-of-Fringe plays to run repeat performances.

In RARE, actors tell their real-life stories, sharing their fears, desires and perceptions of disability. No subjects are censored, with performers exploring topics like death, sexuality, and their simultaneous hatred of and pride in their own disabilities.

Cast members, like Dylan Harman, hope that the play’s frank discussions will prompt audiences to re-evaluate their treatment of individuals with developmental disabilities.

“I hope they will learn to speak to people with disabilities like adults,” he says. “Because we’re human too.”

For other cast members, the play functioned as a personal growing experience. Actress Krystal Nausbaum, who performed in the American film The Memory Keeper's Daughter, says that working in RARE was uniquely rewarding.

“It’s really different than other plays…,”she says. “I can relate to these stories.”

RARE will be staged August 1-3 at the Toronto Centre for the Arts. Tickets are available online through Ticketmaster, or at the centre’s box office. 

Story by: Megan Jones

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RARE gives voice to people with Down syndrome

 

Canadian playwright Judith Thompson’s RARE debuts on July 5 as part of the Toronto Fringe Festival. The play stars nine adult actors with Down syndrome. Through a montage of monologues, members of the ensemble tell their stories in their own words. While Judith helped to curate and fine-tune their work, the play was mostly written by its performers. BLOOM spoke with Judith about the production process, and what audiences can expect. Photo by John Gundy.

BLOOM: Describe how the play was written.

Judith Thompson: We basically start for weeks and weeks of rehearsals just sitting in a circle. I’ll say ‘Let’s talk about childhood memories.’ Everybody has a story. And I have to have a script assistant on a computer getting this down.

Sometimes I ask things like ‘If I feel like a wet street on a hot day, what do you feel like?’ Their answers have been amazingly creative. Nick felt like tall sexy grass. All their images are incredible. James felt like a diving eagle. They just came up with these themselves. It’s absolutely important to me that it’s their words. They might give me a few and I’ll keep asking until I get one that really reflects who I think they are.

BLOOM: What have been the joys and challenges of working on this project?

Judith Thompson: The joys are daily because there’s so much good humour. There is, in (the Down syndrome) community, a greater emotional openness, I will say that. That is a difference that I see…They’ll give you a hug and say I love you. They’re open and out there.

We’ve been instructed to be closed in order to succeed in this society we’ve constructed. We can’t suddenly burst into tears; we have to shove it down. Even though members of the theatre community have more emotional access, the performers that I’ve met with Down syndrome – I think ‘Wow, you should lead theatre classes.’ But that same emotional availability though, if somebody’s upset, can cause problems. Somebody who doesn’t have Down syndrome may hold it in or hold a grudge, but in this community they just burst into tears right there and fall on the floor. That’s a challenge because we have to keep going with rehearsal. I never lower my expectations. We just have a hug, and we talk about it, and then we move on.

BLOOM: What are some of the things you’ve learned through this experience?

Judith Thompson: Before, I tended to just think ‘Oh, (people with Down syndrome) are God’s special angels,’ and painted them all as lovely and warm and sweet. I’ve learned to think ‘No, they’re as complicated and prickly and difficult and wonderful as you or me.’
There was a dynamic that had to shift. I was treating them unconsciously like a younger sibling or something. But I’m an adult and so are they… So they’re not cute, don’t condescend to them. They’re people of profound and complex thinking.

BLOOM: What are you hoping the performers will take out of this?

Judith Thompson: That they own it…and that they’re writers as well as performers. That’s why it was really important to me that it’s their words and they create it. Putting them in another show as performers is one thing. But they’re creating it. And so for them to have that agency I think is extraordinary for their confidence generally. They can actually make change and not be passive. So often people with disabilities are made unintentionally to feel passive. But they are making themselves visible. I’m just the guiding hand, and they are out there telling their stories to the world. No one is telling it for them.

BLOOM: Could you give me a couple of examples of what stories performers will be telling?

Judith Thompson: One of the performers talked about how his greatest wish is to have sex. He’s 22, he’s allowed to say that. And I’m not sanitizing anything that way. And nobody laughs. I mean yes, he’s a 22-year-old male, of course he does.

They also talk about the fact that about 97 per cent of parents, when they find out their baby is going to have Down syndrome, terminate the pregnancy … Krystal actually wrote a letter to pregnant women that she delivers on the stage that is so heart wrenching, and it’s basically saying ‘Keep your Down syndrome baby.’

They talk about their struggles. And they’re very much invested in their families. Some of the parents have said ‘Why is it such a serious play?’ And I’ve said ‘It’s every bit as funny as it is serious, but I’m not here to entertain.’ There’s enough of that around. There’s nothing wrong with entertainment, but that’s not what I do. Theatre has to hold a mirror up, it has to illuminate, it has to make what is invisible visible, and what is silenced, heard. And they are doing it, in their voices.

RARE tickets can be ordered online.

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Marginalized group finds a voice in play

Canadian playwright and director Judith Thompson is casting for a play that weaves together intimate stories from the lives of actors with Down syndrome.

It’s likely Thompson’s is the first play to give voice to this marginalized group: studies show that over 90 per cent of people given a prenatal diagnosis of Down syndrome opt to terminate.

The play – to run at Toronto’s 2012 Fringe Festival in July – will be a montage of monologues that explores what it means to have an extra 21st chromosome.

It will be modelled on two of Thompson’s earlier pieces – documentary dramas Body and Soul and The Grace Project: Sick. The former saw women share stories of life after age 45 in the form of a letter written to their bodies, while the latter gave voice to the experience of youth living with chronic illness or disability – people often stigmatized as being ‘sick.’

I interviewed Madeleine Greey, the writer producing Thompson’s new play, and mother to Krystal Nausbaum (photo above), an actress with Down syndrome who performed in The Grace Project: Sick and hopes to be part of Thompson’s new cast.

BLOOM: How would you describe the new play?

Madeleine Greey: It’ll be a series of monologues woven together about what it feels like to have Down syndrome. The play currently has no script and Judith has a way of coaching stories from people, then spinning her magic and writing and directing them into a cohesive form. This will not be a romanticized version of Down syndrome. We’re not getting anyone else’s interpretation of it. We’re going right to the source – people with Down syndrome. We want to face it head on. What does it feel like to have Down syndrome? What are the high points, what are the low points, what is it really like? Judith is not afraid of the difficult stuff and she’s interested in digging deep to find the joy and pain of every person’s experience.

BLOOM: Who can audition for the play?

Madeleine Greey: We’re looking for people with Down syndrome from teens to senior citizens. Verbal skills and previous acting experience aren’t prerequisites. Judith is well aware that lots of people with Down syndrome may be challenged in terms of verbalizing their story but she’s interested in having them express it in different ways – through dance, song, maybe even visual arts.

BLOOM: How demanding is the rehearsal schedule?

Madeleine Greey: We need people who can make what is a huge time commitment. In May and June we’ll be rehearsing Thursdays, Fridays and Saturdays from 11 a.m. to 5 p.m.

BLOOM: Why did you decide to produce the play?

Madeleine Greey: To be blunt, I’m always looking for opportunities for my daughter, that’s number one, and then secondly, my big motivation is to work with a person who is so creatively renowned. I have great trust in her. And thirdly, I believe that this play, which currently has no script, is going to reveal to audiences in Toronto what it means on all different levels to have Down syndrome. This is a group that doesn’t often have an opportunity to express itself.

BLOOM: What impact do you hope the play will have?

Madeleine Greey: I hope people walk out of this play saying ‘Wow, I had no idea.’ That’s my biggest hope. I feel you can go into theatre like this and meet people that you never would have encountered in your life, learn the most intimate things about them and be so deeply enriched by it.

Auditions for the play will be held Feb. 4 and 5 at Fringe Creation Lab at 720 Bathurst Street, 4th floor. Call Madeleine at 416-469-0852 or mado@madeleinegreey.com to reserve your spot. The audition will be like a group discussion where participants tell their stories.

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