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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'I am woman, I am black, I am doctor'

By Louise Kinross

Chika Stacy Oriuwa has written a brilliant piece in Flare about being the only black medical student in her University of Toronto class.

Chika recounts coming to her first Black Medical Students Association meeting at U of T and realizing she was the only black student in her class of 259. “As I arrived at the venue for the social, my anxieties surrounding the perfect attire for the evening slowly gave way to a sobering realization. I was the only one.”

Chika is now in her second year. In her poem above she speaks about what it's like to study medicine in a culture where racism creates this conundrum: "How can you be both doctor and black?"

In her Flare essay, she notes that while there are more than 627,000 black people living in Ontario—making this the third largest visible minority group in the province—the Canadian Medical Association does not track the race or ethnicity of doctors.

She questions the lack of racial diversity in teaching materials and asks: “Where are the black tutors and professors?”

Chika writes about the importance of racial diversity in medical training and in healthcare. In the classroom, it allows for the sharing of different health perspectives, she writes. In the field, minority patients tend to seek out and report receiving better care from those with whom they identify.

She references U.S. data that shows black patients often face discrimination in their care.

She also writes about the experience of racism against black doctors. For example, after showing up for his shift in a Vancouver hospital in plain clothes, Dr. Boluwaji Ogunyemi took a pair of scrubs and stuffed them in his backpack, she writes. A ward clerk then accused the resident of stealing the scrubs.

Given her lack of black peers and professors, “when was I going to learn how to deal with receiving and internalizing racism and discrimination at the hospital?” she writes.

BLOOM has written about a number of American studies that tracked racist comments from patients to doctors and among medical professionals.

On a positive note, Chika says that the University of Toronto has developed a new Black Student Application Program at the faculty of medicine, and that six black students are part of this year’s incoming class.

The school has also created a teaching position that will involve designing a Black Canadian Health curriculum.

Chika says members of the Black Physician Association of Ontario have been great personal mentors to her, as has Dr. Lisa Robinson, the chief diversity officer at U of T’s medical school. “When Dr. Robinson was a medical student at U of T in 1991, she was one of two black medical students in her year,” she writes.

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Mom writes book to help kids talk about differences

By Louise Kinross

“This is me,” Sheriauna said proudly when she saw the book her mom Sherylee Honeyghan had published.

The cover is of a young black girl wearing a tiara, smiling at herself in the mirror. She has one hand.

Growing up, Sheriauna, now 10, didn’t see herself in the books and toys around her. Dolls “aren’t black, don’t have hair like me and have two hands,” she’d tell her mom. The only time Sheriauna saw herself was when she drew her own pictures. “She always drew herself without her left hand,” Sherylee says, noting that she was born with an amputation below her left elbow.

I am Sheriauna is a new children’s book Sherylee wrote six years ago, when Sheriauna was four.

“When she was younger she didn’t have the vocabulary and emotional regulation to explain ‘this is why I am the way I am,’” Sherylee says. “If children stared or asked what happened to your hand, she’d get frustrated and would cry. I wanted to open a conversation between children and the adults in their life where they could start to understand what an amputee is, and that people with differences are people, too.”

The book covers Sheriauna’s birth and her first prosthesis, fitted at Holland Bloorview. It talks about the things she can do with her prosthesis, and the things she does better without it. “It includes her encounters with other people and how that made her feel,” Sherylee says. “I explain why people might stare or be curious, because she doesn’t look exactly like them. The message is that we’re all different, and the world would be a boring place if we were all the same.”

When Sheriauna was small, Sherylee taught her to say “I was born this way and I’m special” when others asked about her arm. “When we were raising her, we always told her ‘God made you this way and everyone is different in their own way.’”

Sherylee says she wrote the book with simple language, from the perspective of a four-year-old, so that it’s easy to understand.

Today, Sheriauna is a social butterfly who adores hip-hop and loves to help others, her mom says. “She’s at the age where she can be her own advocate and participate in conversations. She’ll be involved in promoting the book and the message behind it.”

Sherylee hopes to launch a website for the book in the next couple of weeks.

She encourages parents to talk openly with children with physical differences. “My advice, first and foremost, is don’t shy away from the conversation with your child. From the get-go I would always roll up Sheriauna’s sleeve, for her mobility and accessibility. The social worker told me ‘You want to let her know that it’s okay to show your stump, to roll up your sleeve, and for people to see that there’s nothing wrong with what’s there.’”

Sherylee says that while it’s natural to want to protect your child, “the reality is that we can’t be there every minute. We have to equip them with the vocabulary, understanding and messaging to take with them, to get them through awkward moments and to feel more empowered.”

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Kudos to Johnson's Baby for its new ad

By Louise Kinross

Johnson's Baby released a new ad that features a child with Down syndrome for Mother's Day. 

It begins with a close-up of a baby's beautiful blue eye, with the line: JOHNSON'S BABY CELEBRATE LOVE AND DIVERSITY.

Then it moves to other baby parts, the toes, chubby fingers stroke a leg, then touch the tummy, hands clasp, and we see the soft skin of the baby's back. Finally, the child's face is revealed, and he smiles. He's a baby with Down syndrome.

WITH A BABY WITH DOWN SYNDROME flashes on the screen. 

According to the Buzzfeed piece linked to above, Johnson's Baby posted the clip on Facebook with this message: "For us and for all mothers, all babies are Johnson's babies."

I love this ad. I love that it conveys the value of every child. I love that Johnson's is including babies that have been marginalized. This is a BIG deal.

I just wish they didn't have to include the child's diagnosis: WITH A BABY WITH DOWN SYNDROME.

The ad speaks for itself. The baby conveys the message of diversity. 

Would a similar ad with an African American baby say: WITH A BABY WITH BROWN SKIN?

Of course not. 

I can't wait to see what kinds of diversity Johnson's Baby brings us next. I hope this is an ongoing series designed to show us the beauty of all children.

The ad was created by Brazilian ad agency DM9.

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A sister's story fuels this scientist

By Louise Kinross

Krissy Doyle-Thomas is a neuroscientist at Holland Bloorview. She's studying whether a brain-imaging tool that detects blood oxygen levels can identify pain in children with autism who use little or no speech. CBC profiled Krissy during Black History Month as one of 150 black women who have made a place in Canadian history for excellence in their field.

BLOOM: What led you into children’s rehab?

Krissy Doyle-Thomas: For me it was out of a need. My younger sister Eddie-Marie was born at seven months and there were some complications: she wasn't getting all of the oxygen she needed. She was diagnosed with global developmental delay when she was very young.

We were a young immigrant family trying to navigate how to get help for her. We were in and out of SickKids for a very long time, meeting with specialists to address her medical needs in addition to trying to understand her global delay. The lack of answers my parents had about how to best support her really impacted our family. 

I was connected to the frustrations and stresses my parents were feeling and that started my desire to learn more, and to be someone who has that kind of information to share. I initially wanted to become a medical doctor. But then I went to school for psychology and I discovered the brain during one of my courses and I said 'This is what I want to do.'

BLOOM: Some people look at the brain and don't want anything to do with it!

Krissy Doyle-Thomas: I'm intrigued by the mystery of it. The fact that one organ controls everything we do. Of course we have other vital organs, like the heart. But the way our understanding of self and the way in which we operate sits in that one place, for me that is intriguing. I wanted to learn about the thing that makes me most like myself. And then when things go wrong, how can we address that? My passion is on the research side. I'm passionate about using the information I have to help find solutions for treatment, and also to educate people about the brain and the disorders I study.

BLOOM: How is your sister doing now?

Krissy Doyle-Thomas: She's fantastic. She's grown into a very independent, mature woman. She's married and has a little girl. She's got a knack for computers. My dad is an accountant and she supports his business. She knows how to handle data. She's developed a life that is who she wants to be. But growing up she had a hard time comparing herself to her sisters, who are all now senior executives in the business world, or me, with my PhD. When she let go of that, she really blossomed in her own way.

What I learned was how we view success is a personal thing, it's individualized. When my parents finally came to terms with the fact that Eddie doesn't need to fit into the same mould that their other daughters do, that allowed Eddie to be who she really is. To accept herself and the 'wonderfulness' that she is.

BLOOM: Can you describe your research?

Krissy Doyle-Thomas: We're using a new brain imaging tool that is portable and inexpensive and allows us to image the brain and see changes in blood flow in response to a task or state. When neurons are active they require oxygen and blood flow goes quickly to the active areas. As oxygen is released the signal changes and we can see where in the brain is active. 

We want to see if this can pick up the pain response in kids who have autism and are non-verbal. Our clinical partners see these kids in our psychopharmacology clinic. They're referred for aggression and irritability, but we don't really know what might be driving this behavioural response. Often times later on the clinicians discover medical conditions that are very painful. We're trying to create a tool that could be used in the clinic to help identify kids who may be experiencing pain and can't tell us.

BLOOM: What's challenging about the work?

Krissy Doyle-Thomas: Understanding the cortical pain response in itself is a challenge, in the absence of emotion. How are we going to think about pain when physical and emotional pain may happen in tandem? A lot of times both need to be treated. We want to know if we can get a reliable signal that will warrant medical intervention.

BLOOM: Why did you choose to study autism?

Krissy Doyle-Thomas: I really wanted to study global developmental delay, but when I was in school there weren't many researchers looking at that. I thought autism is another developmental disorder, if I start there, perhaps I can learn generalizable skills. Then when I'm an independent researcher, I can branch out. My end goal is to make my way back to studying global developmental delay.

BLOOM: What do you love about your research?

Krissy Doyle-Thomas: I love that it provides answers to families, not definitive answers, but more information that helps families understand the brain and autism and will eventually be translated into care and treatment.

BLOOM: Autism is a controversial area because many autistic adults are opposed to the idea of cure and want others to value their way of thinking.

Krissy Doyle-Thomas: I agree with them. It goes back to how I feel about my sister. When a person figures out their identity, we embrace that. If someone wants to embrace their autism as who they are, we need to be respectful of that. And if someone wants to treat their autism, we have to respect that. It needs to be individualized.

BLOOM: You were talking about what you love about your job.

Krissy Doyle-Thomas: I meet really cool kids and they're all so different and I appreciate that. I think diversity is very important. You meet all kinds of people with different abilities, ethnic backgrounds, genders. Everyone brings something to the table. You learn so much about being a human being by walking in the halls here. That's what I love about being in an academic health centre. It helps me to have a new outlook on life—be who you are, and let others embrace that. 

BLOOM: There's a lot of literature on how having a sibling with a disability affects kids. While some is very positive, other research shows brothers and sisters can find the complexities that disability adds to a family to be challenging.

Krissy Doyle-Thomas: I did find it challenging, yes. I always wanted to help, and when we couldn't find answers for my sister, I felt frustrated. She didn't always have the insight to know she was different, she just knew she was being bullied. My parents tried to put these protective parameters around her and she pushed against that. We didn't understand global developmental delay and what she could or couldn't do, and she wanted that independence. It was hard for her to understand why she couldn't do the things we were doing.

BLOOM: There's a group at York University doing research on the barriers facing immigrant moms of children with developmental disabilities. You mentioned you were an immigrant family. 

Krissy Doyle-Thomas: We moved from Trinidad to Toronto when I was nine and my sister was two.

BLOOM: This York group held a workshop here and the diversity in the room was unbelievable. There were a number of support groups that I had never heard of: a group for Muslim moms raising children with disabilities and another for Chinese moms and another for Somali moms. There were also lots of service providers from outside Holland Bloorview. But there were only a handful of our staff there. They were talking about how challenging it is to get the services your child needs when you don't speak the language or don't understand how to advocate in this culture.

Krissy Doyle-Thomas: We spoke English, so that wasn't an issue for our family, it was more not knowing what the best treatment was and how to get it.

But there was a situation recently that opened my eyes in this area. When the CBC story on black women came out, we did a series of photoshoots in groups of about 30 to 50 women. We all shared about what we did, and when the others found out I was a neuroscientist, they had so many questions about their own kids and other family members. Some had been diagnosed with autism or had a concussion or something else. They kept saying 'You have the answers our community needs to hear.'

It made me realize we have to go out into the community, instead of saying 'come to us.' Keeping information within the four walls of my workplace is not what my community needs. Information can be received in a different way if the person giving it understands where you're coming from culturally. So the families say 'Okay, I get this, they're speaking my language, in more ways than one.'

BLOOM: Have your thoughts on disability changed since you came here?

Krissy Doyle-Thomas: Definitely. It's about appreciating people for who they are and not holding anyone up against any one measuring stick. It's about embracing the person and allowing that person to shine for who they are, without biases, or without them having to fit into a mould. This organization opened my eyes to that. It wasn't an aha moment. But the culture here has become my culture, and changed my outlook.

Krissy Doyle-Thomas's research is funded by Holland Bloorview's Centre for Innovation.

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