Diverse dolls help children 'appreciate themselves as they are'

By Louise Kinross

Winnie Mak is part of a multicultural family. She is Chinese, from Hong Kong, and her husband Rafael is French and Greek. They live in London, U.K., and after their son Alex, now 4, was born, Winnie learned that the vast majority of dolls were white, girls and able-bodied.

She wanted to create soft dolls targeted to boys and girls that “reflect the diversity of the world.” So she launched One Dear World with four dolls that represent children from Ghana, Mumbai, Norway and Hong Kong. This fall she's adding six new dolls that have disabilities (including the boy doll with Down syndrome, above. Scroll down to see the five others).

“Each doll has an identity and comes with a story, and can be used as a tool to help children build a positive self-image and a respect for each other’s differences,” she says. 

BLOOM: Why did you decide to create dolls with disabilities?

Winnie Mak: When I first launched the company I wanted to include all kinds of diversity. But I decided to start with cultural diversity, because I was just one person starting the company at the dining room table.

Last summer my story got featured on BBC, and I got some messages from parents asking for dolls with disabilities. For example, one mother who had a daughter with Down syndrome wanted me to consider creating dolls with Down syndrome. I contacted different charities in London and messaged with parents of children with disabilities through Instagram, and I found them very welcoming to my idea, and willing to have a chat with me. That gave me the confidence to think this was something I should try.

BLOOM: How did you choose which conditions to include?

Winnie Mak: I wanted to show a range of visible and non-visible disabilities. My nephew had been diagnosed with autism, so I had become more knowledgeable about that. There’s a doll with autism, a doll with an amputation, a doll with Down syndrome, a wheelchair user, and dolls with visual and hearing impairment.

I was speaking with a consultant in London who gives advice to big corporations on disability policy, and she mentioned that mental [illness] has been classified as a disability. One of my dolls has anxiety. I think young children should learn about mental health and wellbeing.

BLOOM: How are the disabilities conveyed?

Winnie Mak: The doll with hearing loss has a pink hearing aid. The doll with vision impairment is wearing glasses and has a guiding cane. When I was designing the doll with Down syndrome, I met with some family support groups to get feedback on the facial features. I wanted things to be subtle, not exaggerated.

Each doll comes with a booklet which gives their name, place of birth and a short story about themselves. For example, one doll is Irish and she’s experiencing anxiety after she learns that her parents are getting separated. She finds she likes hiking and drawing, and these two activities give her some peace of mind and help with her anxiety.

Each doll has a hero. The role model of the doll whose right leg was amputated after a car accident is Sudha Chandran, an amputee and also a famous Indian dancer. The booklet also has a section called ‘Do you know?’ about the doll’s disability. 

BLOOM: I know Barbie just introduced a black doll who uses a wheelchair, and American Girl has dolls that come with accessories like hearing aids. What makes yours different?

Winnie Mak: What makes my brand unique is that each doll comes with a story, which is a guide for parents or educators to start the conversation about differences. My plan is to develop more stories and content around the doll characters. For example, if I exceed my crowdfunding target, I will write a story that includes all of the dolls, or create a card game that can be played with the dolls. The mission of my company is to nurture future global citizens.

BLOOM: What message do you hope the dolls give children?

Winnie Mak: For children with disabilities, my message is that there are people like them, and they’re not alone. We want all children to grow up having a secure self-image, and appreciating themselves as they are.

I want non-disabled children to learn about disabilities and embrace differences. My son is of the age where he’s very interested in dinosaurs. There are so many dinosaurs and they have difficult to pronounce names, and lots of different features, like running speed. My message is that if young children can learn about all of these complicated dinosaurs, and remember all of the names of the Pokemon monsters, there’s no reason they can’t learn about different disabilities.

BLOOM: How do you make the dolls?

Winnie Mak: I’m not a doll maker myself. I started with some sketches in a notebook and then did a digital drawing on the computer. I’m originally from Hong Kong and used to travel a lot to China when I worked for an electronics manufacturing company. I found a doll-making factory there that is helping me develop the six new dolls.

BLOOM: What ages are they targeted to?

Winnie Mak: Because they are cuddly and soft, they are targeted to children from one to two years old, up to five to six years old.

BLOOM: What do the dolls cost?

Winnie Mak: The new dolls will cost between $40 and $50, because they are more detailed than my first dolls, and more resources were put into developing the booklets that come with them. For each doll sold, 10 per cent of sales will go back to a charity that supports that particular disability. For example, the dolls with visual impairment will support Sightsavers. They work in some of the poorest parts of the world to prevent avoidable blindness and to promote disability rights.

Winnie’s new dolls will be launched in early September through a crowdfunding campaign. You can sign up for more information here. They will be shipped internationally. The wheelchair below comes separately, and can be used for play with any of the dolls.

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'Our nursery programs are a model for social change'

By Louise Kinross

It’s a simple ritual, but one of Silvia Souto’s greatest joys. “Opening the door of the classroom at Play and Learn, and seeing the faces of the children—so happy and eager to come and play in our program—that is pure joy,” she says.

Silvia is an early childhood educator in one of Holland Bloorview's two nursery schools, which are located in the community. Play and Learn includes children with and without disabilities. Silvia first worked as a volunteer at our old hospital site in 1999, after moving to Canada from Argentina, where she was born.

In April, Silvia and Play and Learn co-worker Isabel Zatti made a trip to Macao, China, where they shared Holland Bloorview’s vision of inclusion with early learning educators from 80 countries. “Isabel and I felt the voice of inclusive programming was not heard at other conferences we'd attended. We wanted to do something about it,” Silvia says.

BLOOM: How did you get into this field?

Silvia Souto: After studying psychology and education at university, I worked in special education services in Argentina with children from infants to age five. When my husband and I came to Canada, and were trying to improve our English, my ESL teacher encouraged me to look into Bloorview. You will talk to people who have similar interests, she said, and it will help your vocabulary. I came for a visit and was accepted as a volunteer in the child life program doing bedside play.

I vividly remember the nursing station. Cara Sudoma was one of the nurses there, and she would come in and out, full of energy. Later I did an internship in the child life department, was hired at Play and Learn’s summer camp, and accepted a part-time and then full-time job. I did my equivalency and got my credentials as an early childhood educator.

BLOOM: What is a typical day like now at Play and Learn?

Silvia Souto: The day is 'go, go, go,' with no pause button. The program starts at 9, so we're there at 8:30. It’s a high-quality program, which means we need to carefully plan and prepare. We do a lot of hands-on, sensory activities and art. We want the children to express themselves and explore freely. If we see something they’re interested in, we’ll include that into the preparation for the following day. We follow the children's lead.

We take early literacy and play very seriously, so we do a guided learning circle every morning and use stories to reflect on what the children are doing in their play, and their interests. When we tell the stories, we use props to catch the children's attention. Our guided learning circle is an opportunity to learn new words, make connections between stories and play. It's an invitation to join in with peers and share the joy that comes with listening to a story. 

A typical day happens inside and outside the classroom. In addition to providing children with a rich and meaningful learning environment, we discuss and document their progress, brainstorm strategies to support their participation and learning, talk to their families, and meet with our team of therapists.

BLOOM: How many children are in a group?

Silvia Souto: I work with 10 toddlers and one other teacher. We have one group in the morning and one in the afternoon. We also have volunteers and sometimes co-op students in the classroom. We have a team of therapists who support us in the classroom. They develop a plan of intervention and we find ways we can include it within the child’s play, so it doesn’t look like therapy.

BLOOM: What’s the greatest challenge?

Silvia Souto: Compared with the challenges our families are facing, I don’t feel I have a right to say it’s challenging. I enjoy it very much. In order to support children and families I do have to take care of myself, because I need to be present constantly in my interactions. It’s a demanding job physically, and you have to be emotionally fit. Sometimes I have to remind myself about what you're told on the plane—to put the oxygen mask on yourself first.

BLOOM: Is there anything specific you do to manage stress?

Silvia Souto: We have a very tight and absolutely supportive team that I can always go to, if I need to. I know I can always count on them for guidance, or support, or for taking a break. When you trust your team in that environment, it’s easier to manage stress.

Personally, I like skating in the winter. I keep my skates in the car and sometimes I’ll stop at the local rink and do a couple of laps. The other thing I do to take myself completely out of my worries is jigsaw puzzles. If I need to concentrate on something, I’m going to open a puzzle box. There’s something I love about going from complete chaos to finding the perfect fit.

BLOOM: What’s the greatest joy of your work at Play and Learn?

Silvia Souto: The trust the parents put in us gives me an immense amount of happiness. For some of the families, our nursery school is where they leave their child for the first time. The other element is witnessing how inclusion works—seeing the interactions of the children, and thinking we are planting the seed for a more just society.

BLOOM: What qualities do you need to be successful in your role?

Silvia Souto: Energy, definitely. It’s a physical kind of job. You need to be someone who can connect, who can be trusted to develop meaningful relationships with the children and their families. You need to have a solid knowledge of child development. You have to understand children in the context of their families. You need to have a playful soul, to think as a child, and to be creative.

BLOOM: How do you get your energy?

Silvia Souto: At the end of the day, I like to say I’m enthusiastically exhausted.

BLOOM: Recently you and Isabel Zatti, Play and Learn’s site facilitator, went to speak at a conference in Macao, China. Can you explain?

Silvia Souto: Isabel and I went to the World Forum on Early Care and Education, which is a global exchange of ideas on how to develop high quality programs in early childhood. This year there were almost 800 people from 80 countries.

Isabel and I felt the voice of inclusive programming was not heard at other conferences we’d attended. We wanted to do something about it. This was the perfect venue, because with so many people, our voices could be amplified.

BLOOM: What was your workshop about?

Silvia Souto: We presented on a panel on inclusion, from infancy to adulthood. We presented with educators from South Africa and India and Hong Kong. We talked about how Holland Bloorview is a hospital, and within the hospital we have early learning programs like the nursery schools. We took some of the messages from our Dear Everybody campaign, and showed how we embed these messages into the work we do. For example, ‘If we can’t include everyone in a game, we’re not playing it right.’ We gave examples of how we adapt activities and toys to make sure all children can participate.

BLOOM: How did people respond?

Silvia Souto: They were fascinated that a hospital had a community nursery program within it, and that early childhood educators could work in a hospital. They hadn’t seen that before.

We made connections with a lot of people. We feel our nursery programs are a model for social change, and we have to invest in those formative years to build a more inclusive society. We wanted to spread the idea that if we support children in developing an acceptance that we’re all diverse, and do it at an early age, it’s much easier than trying to change behaviour later on. The interactions that happen in our programs are so natural.

BLOOM: If there was one thing you could change in children’s rehab, what would it be?

Silvia Souto: I think inclusive community programs like the ones we have are key. Play and Learn is unique in that we have a lot of support. We have access to training, to other professionals, and we work as a team. But that doesn’t happen in schools, or even in other childcare centres that are working towards inclusion. They may have resource consultants, but I'd like to see a much higher level of support in daycares and schools.

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What works in children's rehab, and why, is researcher's passion

By Louise Kinross

De-Lawrence Lamptey has a PhD in rehabilitation science and a master’s degree in clinical psychology. He has right-sided weakness related to cerebral palsy and grew up in Ghana. “When I was growing up I was less aware of my disabilities than I am now,” he says. “I was born with a disability, but I was never raised as a person with a disability.” De-Lawrence is a postdoctoral fellow doing research in inclusion and participation at Holland Bloorview with senior scientist Gillian King.

BLOOM: How did you get into this field?

De-Lawrence Lamptey: I was born with a disability. I have a form of CP that affects my right arm and leg. But I grew up in Ghana feeling I was just as normal as any typically developing child.

BLOOM: Doesn’t that culture hold negative attitudes about disability?

De-Lawrence Lamptey: Yes. They attach superstitious beliefs to disability, so they believe it’s caused by a sin or a curse. I was teased, but it didn’t affect my goals in life, or the way I perceived myself. My identity was formed in my family, as opposed to the culture around me.

A second barrier I faced was that I’m left-handed, and in Ghana using your left hand with people in your interactions is culturally considered a sign of disrespect. So if I raised my left hand to answer questions in school, some teachers wouldn’t take my answer because they weren’t aware I was disabled.

In the culture, if you want to use your left hand in interactions you're expected to apologize beforehand, in order not to make people feel disrespected. Can you imagine if I had to say ‘I’m sorry I used my left hand’ to everyone I interacted with on a daily basis? I didn’t do that, so many people thought I was being disrespectful, especially those who weren't immediately aware that I had a disability.

I give a lot of credit to my mom. I was allowed to do everything, and I wasn’t overprotected. I wanted to do what I saw everyone else doing, so I learned how to ride a bike and to play the bass guitar, the drums and the piano. I felt whatever I wanted to do was possible and that things shouldn't be easy before they can be possible for me. I had a supportive family who said ‘Go for it.’

My mom told my teachers in school not to treat me any different from the other kids, so my teachers weren't overprotective either. This made my classmates more accepting because when we got into trouble during play we all got the same amount of punishment. And this made me feel no different from the other kids as well.

The only issue was that equal treatment didn't always take into account what I couldn't genuinely do because of my disability, and so it was cruel sometimes. It also meant that I had no accommodations, which was lacking in Ghana anyway. So you either learn to swim or you drown. In a way, this encouraged me to think out of the box to learn how to live without accommodations and still thrive.

BLOOM: What made you want to do research about children with disabilities?

De-Lawrence Lamptey: In Ghana, many adults with disabilities beg on the streets. If I was begging on the streets, I would be classified as a person with a disability. But when I did an internship in clinical psychology and families came to see me at the hospital, they felt I didn’t classify as a person with disabilities. They would say ‘You’re not disabled.’

It meant disability was not how I looked, but what I could do. That shifted my focus. It made me realize it’s what we do with children that would eventually decide whether they will beg on the streets, or not, in adult life. If I put myself in the shoes of those begging on the street, and grew up in their family, maybe I would have ended up in the street. I needed to get into pediatric rehab where I would be able to look at how to promote inclusion and participation of children with disabilities so they could reach their optimal potential.

Eliminating barriers in society is very critical, but sometimes it can be difficult to do in the short term. For example, initiatives to remove attitudinal barriers  have been going on for years and some progress has been made, but we still have a long way to go. Another example that takes time is redesign of existing architectural structures.

So if we can’t remove the barriers in the short-term, is it possible to work with children to help them work around the limitations of their disabilities, and the social barriers they face, to reach their optimal potential?

How can we teach children to be able to say, regardless of the barriers I face, that I should strive to live to my full potential? That’s why I was interested in working with Gillian on some of her resilience projects.

BLOOM: You mentioned you’re writing up a paper here about a study that looked at parents’ expectations of residential life-skills programs. For example, our Independence Program has youth spend three weeks living on a university campus. Why was there a need for this study?

De-Lawrence Lamptey: Even though residential life-skills programs have been going on for a long time, and people have studied various aspects of them, what parents expect their children to achieve, or the program to deliver, is relatively unknown.

How participants do after they go home to their family depends partly on the expectations of the family. I grew up in a family that was less protective. But what if parents have low expectations that their child will acquire certain skills? We want to be able to add valuable knowledge to improve the program, so that parents are better positioned to give their children the best support.

BLOOM: What kind of research do you most enjoy?

De-Lawrence Lamptey: I’ve been privileged to work in the world of describing and evaluating programs. I like to identify best practices in program design and delivery. I enjoy looking at what impact a program actually has on clients and families, for the purpose of using that knowledge to improve.

This research helps you do two things. One, most of the time when we look at the services we’re providing, we don’t know what is working, or even when it’s not working. And if it is working, we don’t know why. Every child is so different that even though most of the services we provide are evidence-informed, they may work for some and not for others. It’s very important that we optimize the service for a large group, so we can share the knowledge around the world about the effects of the program.

Second, this kind of research gives accountability to funders of the program. They need to know what impact the program is having to determine whether to continue funding it or, if it’s not working, what are the ways we can make it better.

BLOOM: What’s most challenging about your research?

De-Lawrence Lamptey: It’s mostly work I do sitting in front of a computer and typing, so sometimes I don’t have that much of a social life. I’m always working at a computer or reading and I’m always thinking. It can be difficult to turn it off. Even when I’m on my bike I’m thinking about the paper I’m writing, and if an idea comes to me in the subway, I have to write it down so I don’t forget. Subconsciously my mind is always working.

BLOOM: I read an article yesterday by a disabled researcher who said that people working in the field often don’t have disabilities, and tend to view themselves as experts, instead of listening more closely to people with disabilities.

De-Lawrence Lamptey: We all have different experiences. I have been fortunate to overcome many barriers to get a PhD as a person with a disability. People with disabilities face multiple barriers that make it difficult for them to acquire the necessary expertise to do the level of research we do. So it’s very important that we work together.

The greater challenge, I believe, is that the research we produce should make a lot of sense to users. But unfortunately, if we write in a language that makes sense to people with disabilities or service providers, it can limit the chances of it being accepted for publication into a scientific journal. Every discipline has their own language that they use. So I’m torn. To rise in my career, I need to publish. But that means writing in a way that people who need to implement the research may have difficulty understanding.

BLOOM: It bothers me that the research world makes itself exclusive by using jargon that the average person can’t understand.

De-Lawrence Lamptey: I think it's really important for us to write in a way that everyone can understand, especially those who use the knowledge.

BLOOM: What kind of work do you want to do in the future?

De-Lawrence Lamptey: The work I want to do ultimately would be to look at how we could mobilize resources to help people with disabilities in under-served communities in Western countries and in developing countries. I feel the world has given me a lot and I need to give back, and giving back means giving back to people who are most in need.

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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 time for the Paralympics. Where's the buzz?

By Louise Kinross

This morning this story popped up in my Google alerts: Why do Americans ignore the Paralympics?

My first thought was 'What Paralympics?'

I was surprised to read that the Paralympics in South Korea begin March 9. I hadn't heard anything about it here in Toronto.

I messaged my husband, who is an editor at The Globe and Mail: "Did you know the Paralympics start next week in South Korea?"

"I did not know," was his reply.

I was totally caught up in the excitement of the PyeongChang Olympics, and was surprised I hadn't heard about the Paralympics. 

Boston Globe reporter David Scharfenberg, in the article above, describes the disinterest of Americans in the Paralympics this way: "More so than in Europe or Japan, the media landscape in the Unite States reflects an obsession with youth, sex, and money—or, rather, a certain brand of unblemished youth, a certain kind of stylized sex, and a certain type of unabashed capitalism. And the Paralympics just don't fit the formula. They cannot be easily turned into the sexy, profitable entertainment at the center of American life."

In contrast, Scharfenberg notes that hundreds of journalists from the United Kingdom, Germany and Japan flocked to the 2016 Paralympics in Rio de Janeiro, and the London games in 2012 were packed.

The full schedule of the PyeongChang Paralympics will be available here soon, the official website says. But the actual event starts a week today. Isn't that leaving it a little late?

Last week, The Toronto Star ran this piece about how Canada is sending 55 athletes next week, its largest contingent. CBC also has a story about it. But I don't see much, if any, coverage on individual athletes. Think about the stories we read about athletes leading up to the PyeongChang Olympics?

The 2018 Paralympics trailer, above on Youtube, has only 9,000 views. Yet Scharfenberg says that the games are the world's third-largest sporting event.

I couldn't find a Canadian video for this year's Paralympics. Please advise if there is one. I did find this U.S. one, with less than 400 views! 

Scharfenberg interviewed Rosemarie Garland-Thomsom, a professor of English and bioethics at Emory University who specializes in disability studies about the American disinterest in the Paralympics. I read her excellent book called Staring: How We Look. She points to the deep discomfort in American culture with the disabled body.

Canadians like to think their values are somewhat different from Americans. I'm not sure if they are in this respect.

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Finding the music in everyone

By Louise Kinross

The other day I posted a call for story ideas on the BLOOM Facebook page.

Karen Bojti wrote: “Another ‘out of the box’ person I have discovered is Laura Nadine. You can Google her. She’s a professional violinist, a wandering minstrel and music teacher. She is also a woman on the autism spectrum. She is teaching Charlie to play the violin.”

I hopped over to Enlightened Audio, which is Laura’s website, and this sentence jumped out at me: “I teach music to all humans.”

It sounds like common sense, but it’s revolutionary. Many children with disabilities struggle to find a music program they can attend, let alone flourish in.

Laura lives in Buffalo, but she travels to Toronto on weekends to teach here, so she came to visit me.

Laura primarily teaches string instruments, but she also teaches piano and guitar at a beginner level.

“The key ingredient to my teaching approach is presuming competence,” Laura says. “I truly believe every student can learn. We just may need to adjust the method or the way in which the student connects with me. I want to make it clear that I’m not a music therapist. I’m teaching children to acquire the skill of playing the instrument, and when they’re finished, these students are playing core material like everyone else.”

Laura says about 80 per cent of her students have disabilities. Most have autism, but she’s also worked with children with cerebral palsy, Down syndrome and ADHD.

“One of the things I think is flawed in understanding disability is that we think disability is static: when you’re assigned a certain IQ, that’s what it is. We don’t take into consideration the error of the measurement systems, and that kids are fluid. They can grow and learn more. I’ve seen this time and time again with autistic children going from being non-verbal to communicating with a letter board. We’ve got testing models that assume all humans fit into a static model. We really don’t understand the grey area of the spectrum, and the ability to make new [neural] connections to compensate for places where there might be flaws.”

When working with a new student, Laura encourages them to make a sound with the violin. “Their bow hold might not be perfect, but making a sound is rewarding,” she says. “I let the child take the lead. If the child is afraid to touch the instrument, we unpack it and look at it, and I talk about how it only makes sound when the child wants it to make sound.”

For a child with autism who has trouble getting her body to do what her brain wants, she'll take the child’s arm and help her bow up and down.

For some children with autism, touching the violin to their shoulder and resting a chin on it “can feel like lightning shocks going through the body,” Laura says. “The goal is to get it on their shoulder as soon as possible, so they can train their own body to tolerate the input. However, if I have to hold the violin first to get to that step, then I do that. I would face the student and say ‘I know your brain understands what you need to do, but your body needs time to learn.’”

The good news is that “the body and brain have an amazing ability to increase tolerance to input, so people on the spectrum can learn to be a little less sensitive through training and understanding. The more times we do something, the less intense those shocks will feel, until they can independently hold the instrument.”

Laura struggled in school growing up because her autism wasn’t diagnosed. “The hardest thing for me is my nervous system,” she says. “I went to public school in the states, and they had no windows in the classroom and fluorescent, vibrating lights. It was hard to be in this building with all this input. There were bells ringing and kids chewing on pencils. I could even hear the clocks tick and the water fountain pump turn on. I had meltdowns that weren’t physical—where I would shut down and couldn’t speak. It manifested in night terrors. My teachers thought I was sick. I dropped out of high school in Grade 10 and did correspondence school.”

Laura says that during her struggles at school, “music was my island of increased ability.” Within four years she was playing at a professional level, and was asked to tutor other music students after school.

Laura says she may have synesthesia, where “one sense gets confused with another. In my case, my vision has a sound. What I see creates music in my head. When I was in music class at school, I would pick up snippets of sounds throughout the day, then organize them into a song to play on my violin. It was an outlet for stress. I called these songs shadow songs, and one of the first I wrote was called All Alone. I wrote it at age 14. I call them shadow songs because everything has a shadow, but for me, everything has a song.”

It wasn’t until Laura was 27 that she learned she had autism. “My second child Jacob was doing some odd things that reminded me of myself,” she recalls. “He had to have things organized in a very special way, and he wasn’t speaking fully until right before he went to kindergarten. I took him to the doctor and he gave us the diagnosis of autism spectrum disorder. Then, while talking to me about Jacob, he handed me some literature about adults on the spectrum. I guess I was obvious.”

Laura says getting the diagnosis was freeing. “It was like someone wiped the fog off my vision. The diagnosis is a toolbox, not a label. It told me what set of tools I needed to adapt to succeed in the world, not just survive. Nobody wants to just survive. People want to have a quality of life and I knew I wanted to be more.”

She went to college to study psychology and education. “With a diagnosis, I was able to ask for help with note-takers and extended time on tests, and I went from being a failing student to having a high GPA.” Laura says she wanted to understand better how her mind worked. “I felt many of the interventions for autism were obedience-based, not development-based, and I wanted to understand more so I could do more.”

Laura says what she’s learned from her students is that “there’s always a way, even when it feels like we’re pressed up against a wall and not making any progress. I’ll wait for the student to shine a light on something else that ends up working for us. That’s part of being student-led. I’m not trying to fix the student. I’m teaching them to navigate through their disability.”

Laura receives lots of positive feedback from her students and their teachers. “One girl who uses a letter board told me that music changed her life, and was a new way for her to communicate her inner thoughts.”

Laura hopes to move to Toronto in the New Year and become a Canadian citizen. “When I came to Toronto, it was the first time ever that I felt like I was at home. The community here is so warm and embraces unique perspectives. I can’t wait to be a part of that society on a daily basis.”

Laura has a book: I am Snamuh: My Journey with Autism and the Power it Gave Me. She also has a few signed copies for anyone interested.

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'Trust your instincts. That's what I tell parents'

By Louise Kinross

Fahima Afroze is a biomedical engineer with three daughters. Myreen, 11, has autism and Zafreen, 8, has cerebral palsy.

When Farzeen, now 4, was hospitalized at six months old, Fahima knew her way around the health system.

“They thought Farzeen had a bone infection, but she kept getting other infections,” Fahima recalls. “She caught hand, foot and mouth disease, and had yeast infections in her tongue. They brushed it off and said ‘she’s a kid,’ but my other kids weren’t that susceptible. I kept asking if we could call someone to look at her immune system, and they looked at me like I was the ‘crazy mom.’ One day a doctor left her medical record in the room by mistake, and I read it. I saw her neutrophils dipping to a dangerous level. Neutrophils are a component of the white blood cells. Without them, you have a suppressed immune system. When I showed the doctor, his eyes widened and he paged hematology and the cancer clinic. They gave us the diagnosis of Neutropenia, which is the body’s inability to make neutrophils. I knew something was wrong with her immune system! I had a maternal instinct about my child, and I was collaborating. But they were renowned specialists thinking ‘she can’t teach us our job.’ Trust your instincts. That's what I tell parents.”

With three daughters and three diagnoses, Fahima juggles over 300 medical appointments each year. “If they had the same thing, I could take them to the same appointments,” she says, but each child sees different specialists. Because she can never be certain about the length of visits, “I often have to drag the other two with us. Your sense of normalcy changes when you have a child with special needs. Our new normal is spending the whole day at hospital, or the whole day getting a leg casted.”

When she's not ferrying her children to doctors and therapists, Fahima is advocating for their inclusion.

One of her greatest frustrations is disability stigma. “It’s how people treat your special-needs child,” she says.

After her daughter Myreen spent a few years in a contained ‘community classroom,’ Fahima fought to have her educated in a regular class. “It’s the mindset at the school board that children who are differently abled don’t flourish in the regular class, and have to be segregated. They are very proud of their community classrooms.

“My whole philosophy is that there are no community classrooms in life. There is no community classroom in the workplace, in a place of worship or at an amusement park. We are expected to thrive in regular society. The school board is giving these students the mindset that they don’t deserve to be with socially ‘normal’ people. How do you impart social skills when you segregate students from society? Their peers are their best mentors.”

In the community class, Fahima says Myreen didn’t learn the regular curriculum. “They teach life skills, and it’s up to the teacher how she wants to teach life skills. My child was taught that the stop sign is an octagon for three years. Here’s a child who’s so bright, she knows all the polygons in the world.

“The community classrooms assume the students aren’t going anywhere. So while other students graduate with a diploma, they will graduate with a certificate. We’re closing doors on them before they’ve even tried life.”

All three girls are now in regular classrooms. “My kids have learned to manage in life,” Fahima says, yet they're socially isolated.

When Myreen joined a regular class, she “did well, getting lots of As and Bs. But she didn’t know how to handle the bullying,” Fahima says. “The other students put her up to do things, and she got in trouble. I proposed a buddy system, where an older student would support and mentor a younger student, and could be vigilant to prevent bullying. But the school didn’t do it. That would be going the extra mile.”

Fahima’s second daughter, Zafreen, is in Grade 3 on the ground floor of the same school. She wears leg and hand braces. Fahima is concerned about next year, when the Grade 4 classes move upstairs. She hopes the school will let Zafreen use the elevator. “Every time I ask for the littlest things, it’s like I asked for a kidney or money out of their own pockets, and the push back is crazy. I’m labeled as ‘that mom.’”

Fahima says it’s draining to advocate constantly. “How much can you preach and teach people along the way? I feel I’m doing this over and over again. Every year, I have to battle with a new set of teachers and reinvent the wheel.”

Because her children fall in a grey area, “they aren’t good enough for inclusion, but they’re too good for services,” she says.

Fahima pays for most of her girls’ therapy privately. “I have a new way of counting money,” she says. “I call it ‘therapy hours.’ If I see a $600 coat, I know that’s more than five hours of therapy, so I’m not buying that coat.”

Outside of school, her children tend to participate in adapted or special programs. “Even with camps, you have to choose the special-needs camps, because they will have the accommodations,” she says. “I can’t believe this is 2017 and I’m fighting for inclusion.”

Fahima recalls meeting a social worker who asked how she was coping with three children with chronic conditions. The social worker noted the increased risk of depression in parents who have only one child with disabilities. “I showed her my schedule of 300 plus appointments a year, and I told her I volunteer at places like Holland Bloorview. ‘I don’t have time to get depressed,’ I said.” Fahima laughs. “I guess I could pencil depression in on Tuesday, from 12 to 2.”

“I would be lying if I said it was easy. The hard work, the blood, the tears are too real. But, once you go past the grieving point, you have to hope for the better. You have to make the best of what’s handed to you.”

Volunteering keeps Fahima motivated and energized, she says. She co-founded the York Parent to Parent Support group, which helps parents advocate for their children at school and in the community. She also sits on Holland Bloorview’s Research Family Engagement Committee. “It’s a way for me to give back and a way for me to connect with people,” she says. “It’s not only my children whose social lives have suffered. When I’m volunteering, I don’t feel alone. I see other people in similar or even worse pain, and it’s a humbling experience. I get a reality check. I also like to share knowledge so that someone can learn from the lessons of my life. I hope that someone else may be able to bypass some of what I’ve experienced. And I feel supported when I hear other people’s stories. It’s not just me.”

Fahima recently spoke at a golf tournament by the Ontario Glass and Metal Association, which was dedicated to Holland Bloorview’s Family Support Fund. After talking about how her family has benefited from the fund, which supports equipment, recreation and respite, a participant offered to match the $3,000 that had already been raised. Most recently, she shared her story with Holland Bloorview research students.

Fahima became a family leader at Holland Bloorview even though her daughters are not clients. “We fall out of the catchment area because we live in Markham,” she says. “I’m allergic to the words ‘catchment area’ and ‘mandate.’ Every rejection letter I get has these words in it. We have nothing that compares to Holland Bloorview or SickKids where we are. Diseases don’t come by catchment area. It’s unbelievable that there would be such a difference in services just 40 miles from Toronto. I intend to speak to the CEO at Holland Bloorview about it, if I can.”

Fahima grew up in Iraq and Kuwait, and her family were refugees during the Gulf War. “When you’re a refugee, you’re not even treated as a human being,” she says. “You’re treated with no respect. You’re at the mercy of other people.” Eventually, the family was able to get a “flight from Jordan back home to Bangladesh.”

Fahima was studying engineering in Utah at the time of the 9/11 terrorist attacks. “I volunteered to speak about what it means to be Muslim, and that terrorism is not a religion,” she says. “No religion preaches to harm humanity. Instead, they preach unity, brotherhood and love for mankind. I wrote a paper called The Gulf War: Facts vs. Fiction and I got an A for it.”

Fahima came to Toronto 11 years ago. She is a Canadian citizen. Her oldest daughter Myreen hopes to be a surgeon and a pianist. She already has perfect pitch, her mom says. Zafreen wants to be a teacher. And Farzeen has her sights set on being a dancer. “We have the same dreams as any parent does,” Fahima says.

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Don't let feeding tube get in the way of fun

By Louise Kinross

Over the last year Jennifer Choi Han made 10 videos about family life with a child with severe disabilities who is fed real, blended food through a g-tube. The videos feature Andrew, 7, who has cerebral palsy, and his twin Eleanor, their sister Jane, 5, and brother Mikey, 3.

In the videos, the family, who live in Long Island, go to The Nutcracker ballet, visit a fall festival, spend a day at the beach, check out a candy store, go to a barbecue and meet Santa Claus. The videos show Andrew eating the family’s breakfast, after it’s blended, at home before leaving, and the meals his family feeds him while out, wherever they happen to be. The music is upbeat, the kids are happy, and Andrew is integrated into everything they do.

It wasn’t always this way. Back in 2012, Jennifer wrote a piece for BLOOM about how miserable life was when they were feeding Andrew formula prescribed by doctors. It exacerbated his reflux, and Andrew spent his days retching, vomiting, not sleeping and losing weight. He even stopped smiling. “He was so unhappy because he was so hungry and wasn’t sleeping and had many, many seizures,” Jennifer says. “I never expected to take him out in public places, to actually go out and enjoy being out. Our vacations were disasters.”

BLOOM interviewed Jennifer about her video series A Day In The Life with Cerebral Palsy and a G-tube and how much their life has changed since they switched Andrew to a diet of real, blended food.

BLOOM: Tell us a bit about Andrew.

Jennifer Choi Han: He has spastic quadriplegia and controlled epilepsy. He’s also blind and doesn’t speak. But we know when he’s happy and sad and when you’re around him, you learn his language. He’s a very giggly boy and he responds to touch and sound. He loves music and he loves people. When people talk to him he responds with moans, and the conversation goes back and forth like that. If he’s bored he’ll sigh. We go to church every Sunday and he always sighs in the middle of the service. His siblings play with him and sing with him. Right now the kids love the Troll soundtrack from Disney. It makes Andrew freak out in happiness and he’ll sing along and laugh and kick. Andrew loves school because he recognizes voices and is very sociable. He’s the happiest of our four children.

BLOOM: Why did you start your video series?

Jennifer Choi Han: For a very practical and utilitarian reason: I wanted to raise awareness that there’s something called a blenderized diet and I have a strong belief it should be a treatment option for severe reflux. It’s also a healthy way of living with a feeding tube. In my mind, it saved Andrew’s life. After the BLOOM article I received lots of comments on my blog and I knew people were going to the site because they wanted to do the blenderized diet. I had it tucked in my mind that one day I would make videos about how we did it. Recently I was ready because my kids were older and Andrew had been medically stable for a few years. I wanted to make videos that have a very warm and cheerful vibe.

BLOOM: They are fun and upbeat and full of happiness.

Jennifer Choi Han: Learning about Andrew’s brain damage was completely devastating. In my mind, it was the worst thing that could happen to a family. In his first years, Andrew was sad and miserable. I scoured online forums looking for stories of families and trying to predict what his future held. I watched three videos on YouTube and I cried my eyes out. One was of a little girl who was in a diaper prone on a mat, moaning, and people were watching her. Another was parents talking and sad music in the background.

What started off as practical videos shifted to ‘a day in the life’ videos that offer a narrative of hope about a child who’s happy and out and about, enjoying the world and seen by others.

BLOOM: Many of your videos are in New York City. Isn’t that a challenge for accessibility?

Jennifer Choi Han: It’s not super accessible, but it’s doable. When we go to the city we always make sure to drive and avoid crowded places. We go to big, spacious places. Touristy places tend to be more accessible. For example, Central Park is fairly accessible. We took Andrew to the ballet and he really enjoyed it because he loves music. We take Andrew to the pool regularly because kids with cerebral palsy are happiest in the water. Usually I research stuff like crazy before we go.

BLOOM: In one video you’re on the subway.

Jennifer Choi Han: That’s the recently built Second Avenue Subway line. It’s outrageously accessible with ramps and elevators and even a wheelchair boarding area by the conductor’s window. Unfortunately, the other lines aren't stroller or wheelchair friendly. When Andrew was younger I would check online to plan ahead, but even stations that were supposed to be accessible weren’t because elevators were broken or something hadn’t been updated. So we stopped using the subway.

BLOOM: You said you rarely see other people with disabilities when you go out.

Jennifer Choi Han: I suspect that’s because of the whole bathroom situation. There are not a lot of accessible bathrooms—unless you’re okay putting your loved one on the floor. We’re lucky at this point because Andrew is very small. We can change him in the car. Sometimes we carry a sheet and change him on a park bench while my husband or his siblings hold up the sheet for privacy. As Andrew gets older, the bathroom thing will become a big issue because I need to preserve his dignity.

BLOOM: In the videos, you feed Andrew in public, wherever you happen to be. Is that intentional?

Jennifer Choi Han: Yes. I feel very strongly that people with disabilities need to be seen. Disability is part of the human experience. I never see disabled people out and about, and I feel in order for the world to be more open and inclusive, and to not fear disability, everyone needs to see each other. When Andrew was young, I was very self-conscious about stares and about what I was doing, but now I’m not at all. I own this role we’ve taken on and I see the benefits.

We talk about the ‘Andrew effect.’ When we go out with Andrew, children come up and stare and ask questions like ‘What’s wrong with him?’ I love when they ask questions because I can help answer them. I’ll say ‘You know how you or I drink or eat with our mouth, and then it goes down our throat and into our belly? Well, Andrew’s mouth doesn’t work well, so his food and drink goes straight into his belly.’ If they ask why, I say ‘Andrew has a boo boo on his brain, so he’s not able to use his mouth as well.’ It makes so much sense to a little kid. There are also lots of kid-friendly parts of feeding Andrew, so I’ll ask ‘Do you want to help?’ They can put in the water or hold something for me.

My youngest child, Mikey, is a ham and he’s very perceptive of other people’s reactions. If strangers stare, he’ll go up and hold Andrew’s hand, cuddle with him or kiss him and sing songs.

BLOOM: Feeding Andrew looks easy in the videos. But isn’t there a lot of planning? How do you make sure the food doesn’t go bad?

Jennifer Choi Han: The crazy thing is how easy it is. I hate cooking. My three-year-old could tell you how to feed Andrew. When I first started out, I was taking home-made blends out, and that requires bringing ice packs and keeping the food cold. But now that there are pre-made, blended products on the market, we don’t need to pack ice or worry about food spoiling. These products are shelf stable for two years.

So if we’re at the beach, I’ll open a pre-blended package that might have salmon, oats and squash in it. The only supplies you need are a syringe, extension tube and a plunger to push the food through. I take a zip lock bag and put one meal plus all of the supplies, including bottled water, to flush and clean with. If we’re out for the entire day I’ll have four meals bags. It’s not onerous at all. In fact, it’s much more onerous getting snacks for my other children.

The two premade products I use are called Real Food Blends and Functional Formularies.

BLOOM: How have people reacted to the videos?

Jennifer Choi Han: When I made my first two-minute video, which was about how I bolus real food through a feeding tube, I expected maybe 100 views. Within the first week there were 1,000 views. Now there are over 6,000 on that video. People started to private message me to thank me, ask me questions and tell me how life-changing the diet had been for their child, which was very gratifying. My first 'day in the life' video has over 11,000 views. Who would have thought a video about cerebral palsy and feeding tubes would be viewed over 11,000 times? But the focus has moved from feeding tubes to a well-lived life.

BLOOM: You always look relaxed and energetic in the videos. Isn’t it physically exhausting managing Andrew’s needs and your other children’s needs?

Jennifer Choi Han: There are two reasons I look quite refreshed: Andrew is happy and stable and I have a lot of resources. My mother lives with us and I consider her a primary caregiver as well. We also have a full-time nanny on top of that, and my husband is super hands-on and helpful. I work full-time as a teacher and my workplace is a two-minute drive from home. My husband is a physician, so with our two incomes, we have a lot of options.

It takes a village, and I have a village. A lot of parents, especially in the United States, don’t have a village. They don’t have resources, and that’s where things fall apart. When I strike people as refreshed and cheerful, I’m quick to tell them it’s because I have time to myself. My situation is not available to a lot of families. With our new administration, I’ve been taking part in a postcard campaign and making calls to legislators about health care.

I never could have imagined we would be at this place during those hard, early years. I really like my life now. I really like being Andrew’s mom and I love Andrew to pieces. It’s very therapeutic for me to make these videos and to view them.

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Like gender, ability is more fluid than we think

By Louise Kinross

I was at a fabulous workshop at Holland Bloorview yesterday on how to create places that include and respect people who are lesbian, gay, bisexual, trans or queer (LGBTQ).

The most important thing is “to give people space to self-identify,” said Ashley McGhee, a specialist in education and training from The 519 community centre in Toronto. That’s done by asking a person what pronouns (he/she/they) they use to describe themselves. Then, Ashley said, affirm and honour the person’s response. 

We did some great exercises to better understand the difference between your sex (male or female, based on the anatomy you were born with); the gender you identify with internally; the gender you choose to express in the world; and your sexual orientation. Instead of being rigid, many of these things are fluid and change over a person’s lifetime.

We can talk to our kids about this and check in with them on how they identify.

The 519 offers a wide variety of programs for queer and trans families and parents of gender non-conforming kids.

“We need to challenge the dominant narratives about the way people are supposed to look, feel and move,” Ashley said.

I thought there were parallels between how we create an LGBTQ-friendly place and how we create a disability-friendly place.

We could ask youth how they describe themselves: do they take pride in the word disabled, or use person-first language, or use a reclaimed word, like “crip,” or have a unique way of describing their disability experience, or not use the word disability at all? Just like gender and sexual orientation, abilities are on a spectrum. It’s not a simple binary of “abled” or “disabled.”

But the most important thing I got from Ashley's presentation was that however a person describes themselves, we affirm and value them. We don’t value one gender identity or sexual orientation over another. We don’t value one ability or disability over another. 

“Labels are meant to help people better understand themselves, not to be used by others to categorize or stigmatize or 'other' the person,” says Daniel Scott, Ronald McDonald Playroom coordinator and member of the hospital's Equity, Diversity and Inclusion committee. “It's about how people self-identify, and it's about those of us who don't identify [that way] making it our responsibility to try to educate ourselves.”

Ashley suggested we might want to look, as an organization, at the personal information we collect, for example in research. “Is it really necessary to ask a person’s sex, which is asking them what anatomy they were born with?” What does it tell us if we record an F for female because of what we see, but the youth in front of us identifies as a boy?

The bottom line I got from Ashley’s talk was that identity can shift, but human value is a constant. A great message for our community.

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Filming autistic swim team changed mom

By Louise Kinross

Swim Team is a feature documentary about the sense of community and joy three youth with autism experience swimming on a competitive team called the Jersey Hammerheads. It’s also the story of their parents and their extraordinary efforts to support children who have been written off by professionals and shut out by other families. The film was part of the ReelAbilities Film Festival in Toronto this month. BLOOM interviewed director Lara Stolman.

BLOOM: Why was it important to you to do this film?

Lara Stolman: I’m the mother of a child with autism myself. I was searching for swimming lessons for my son and I found this amazing story.

BLOOM: That’s so interesting, because I assumed as director that you didn’t have experience with autism.

Lara Stolman: I don’t think I would have seen it the way I saw it, and I don’t think I would have been granted the access I achieved with the families, if I hadn’t been the mother of a child with autism.

When my son was little he had no fear of water. When he couldn’t swim, I was worried he would just wander off and jump into a lake or pool and drown. I found Coach Mike and his wife Maria and they told me about their plans to start their own team. So from a story standpoint, I was there at the beginning, which was great.

BLOOM: The film includes many private and candid moments with the boys and their parents. For example, in one scene Robert, who is 16, learns he has autism. How did it work out that you were present for those?

Lara Stolman: I appreciate that question. It’s part of a documentary filmmaker’s job to gain the trust of the subjects. But in this case it was much easier to get to that point where everyone was comfortable with me, and willing to let me come into their lives with cameras, because of who I am as a parent. We had so much in common from day one.

BLOOM: Some of the most moving parts are when the parents talk honestly about raising their child with autism—including how isolating it is for them and the pain they feel when their child is excluded. What did you learn from the parents?

Lara Stolman: Being a parent of a child with autism I came in knowing a ton, but I still learned a lot. One of the reasons I felt so compelled to make this film was that as much as I had in common with these people, there was something I didn’t have in common: their positive outlook and their willingness to have high expectations.

I had come from a place where professionals said so many negative and terrible things about my child’s prognosis. I don’t think that’s unusual. Doctors tell parents of kids at the age of two or three that your child is never going to college, your child will never speak, your child will never take care of himself. When you hear that repeatedly, it’s extremely discouraging and defeating and can really impact the whole family in a negative way.

When I met Mike and Maria I was so struck by how positive they were. They heard the same negative things, but they persisted with their high expectations with their son. They wanted to see if their high expectations would rub off on the other kids and I believe they did, and they rubbed off on me too. I changed as a mom. I learned the importance of not giving up on your child, setting those expectations high, and not letting the other people around you give up on your child.

BLOOM: So many of the film’s scenes are magical because they’re shot underwater. How did you do that?

Lara Stolman: We had a director of photography who wore a wet suit and encased a camera in a water-proof casing and she swam with her camera. I also used GoPros and we experimented and placed them in different ways and had the boys wear them themselves.

BLOOM: The parents articulate really hard parts of their lives. Did their experiences mirror yours?

Lara Stolman: Now we’re really getting inside the story. No one has asked me this and I’m a little apprehensive. Of course I did all the interviews. I was on the other side of the camera, and I decided what questions to ask and which questions to edit into the film. I decided how to structure those answers into the film and how to fit the story into the film. My experience influenced it all.

I thought there were very important things that needed to be communicated. The film needed to communicate how hard parents work at helping their children when they have challenges, and how they’re working round the clock. All of the parents in this case had full-time jobs and one was going through a divorce.

It needed to show that sometimes financially for families it’s a burden or a hardship or impossible. It was important to convey that the services and supports aren’t sufficient, and that it can be very scary for parents when they think about what’s going to happen when they’re no longer around.

These kids are generally excluded or ostracized from so many things other families take for granted. The film was about a swimming team, but it could have been a film about a marching band or a theatre group. The point was that these are things that, if you’re a family with typical kids, you know they’re available to your family. And it’s not just for your kids, it’s for the family.

Sports is like the town square. Families can interact with one another and meet one another. In the midst of all of that is a lot of important socializing. If your child is excluded from those kinds of activities, you’re also excluded and isolated as a family. This swim team provided a much-needed sense of normalcy and community that these families hadn’t experienced.

I remember Maria telling me that Mike had never been invited to a birthday party and she’ll never forget the time she tried to invite people to a party for him and no one came. She cried when she told me that story.

BLOOM: I was moved by the interviews with Patty. She would be talking with a smile and then there would be tears running down her cheeks, but she would try to return to a smile. It made me think about how as parents we feel we have to always present a positive face to the world, because disability is so stigmatized.

Lara Stolman: I live about an hour away from these families, but in making this film I definitely became a part of their community and I fell in love with them and their kids. It was really important to me to show that even with a character like Kelvin, who represents a child that needs so much support, that he’s funny and lovable and talented and has things to contribute.

BLOOM: What was the most challenging part of putting the film together?

Lara Stolman: I think the hardest part was deciding what was going to be in the film and what we’d have to leave out. We had such great material, and there were such interesting families on the team. But I knew from the beginning we had to narrow it down. I had a clear sense that it had to be two to four characters in order to really tell an indepth story about these characters.

BLOOM: What do you hope viewers take from it?

Lara Stolman: I hope it inspires other families to set high expectations for their children, and I hope it inspires professionals to not make prognoses when there’s still so much that’s unknown about autism. I also hope the film serves to open the eyes of people who haven’t had experience with autism to the stigma and stereotypes that are still out there. And I hope it shows that young people with autism can have skills, they can be fun and worthy and valuable members of our community.

It’s so important that cinema reflects our lives. People with autism and developmental disabilities and all disabilities need to see their lives reflected in cinema. I hope this film helps in that respect.

BLOOM: I think it would have been hard for you to make this film if you hadn’t been the mom of a child with autism.

Lara Stolman: I have to say that nobody else could have made this film. As a mother raising a child who’s approaching his transition years, I saw that these were important problems that we should make the public aware of. I was aware of these public policy issues about how do we include people with disabilities—especially developmental disabilities—in our community, in the midst of a history where, forever, we’ve excluded them. It wasn’t that long ago that we shipped them off to institutions. What’s really important for these families is that their kids find jobs, and have some semblance of independence, and the film shows how difficult that is.

BLOOM: And even more so now with the cuts that are being proposed to Medicaid, which will affect so many families of children with disabilities.

Lara Stolman: It makes it even more urgent. The president wants to cut all of this aid. That would make a bad situation even worse.

To find out about upcoming screenings, visit Swim Team.

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