While in hospital, Fiaz creates bright, bold, energetic art

By Louise Kinross

Fiaz Rahman has had a rough six months. The 18-year-old developed a pressure injury in August that prevented him from going to school for months. Just before Christmas he was hospitalized at Holland Bloorview. "More than physically, it was emotionally painful, because I wasn't in control of it," he says. "I didn't intend for it to happen. It ruined my lifestyle. I couldn't enjoy my summer or go to school. It was difficult for my parents, and I couldn't hang out with friends. I felt trapped, isolated and lonely." While in hospital, Fiaz has pursued his love of art, and he has dozens of bright, bold, energetic pieces on display in his room. We spoke about his stay here.

BLOOM: How has art helped you cope while in hospital?

Fiaz Rahman: I've always loved art. I love media and I'm a poet. I love movies and colours and imagination. They're all a big part of my inspiration. Doing art here showed me a lot of things I didn't know I had inside me. It feels like I'm creating content for the world. You know how artists leave their mark and their legacy, and make a name for themselves?

I like colours—constructing colours, colliding colours, obstructing colours. I want to create art as a business in the future, as a career. I want to go to the Ontario College of Art and Design. I like trying new things, and seeing what works, and what doesn't work, for me. I like making something better.

BLOOM: Where did you do your art while here?

Fiaz Rahman: I did some of it in recreation and some of it by myself in my room.

BLOOM: I noticed you have some art gallery tickets on your windowsill.

Fiaz Rahman: Dr. Flap, the clown, printed those up. I've tried to invite everyone and anyone.

BLOOM: What has been the hardest part of being in hospital?

Fiaz Rahman: I love this place. It's an amazing place. People need each other and we need to take care of each other. Kindness goes a long way. I've had a lot of support and I'm happy mentally and emotionally here. I still have my pressure ulcer, but it's healing and I'm so grateful. It's not as deep as it was. 

BLOOM: Do you have any advice for our staff?

Fiaz Rahman: It's important for staff to understand where a child is coming from. Don't judge them. Understand and have empathy for them. You need to connect to the kids.

BLOOM: What advice would you give a child or teen who was coming to stay here?

Fiaz Rahman: It's such a great facility. Speak to people here, and let them help you. Create new friends. Surround yourself with a positive environment. Try to find out what you're good at and explore your passions. It's going to be tough, so you have to be strong and patient.

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A girl who wanted to disappear becomes 'The Pretty One'

By Louise Kinross

Keah Brown is an American writer working on a book called The Pretty One, which is a collection of essays about living as a disabled woman of colour in a white, abled world. Keah studied journalism at the State University of New York at Fredonia and lives in Lockport, N.Y. She’s a senior entertainment writer at ClicheMag.com, and her essays have been published in The Rumpus, Harper’s, Teen Vogue and Lenny Letter. I first heard about Keah a year ago when she launched a photo campaign with the hashtag #disabledandcute on Twitter and it went viral. I wanted to talk to her about the impact of racism and ableism when she was growing up.

BLOOM: How did your experiences as a black, disabled woman figure into your desire to write?

Keah Brown: Writing is something I’ve always done. Even in secret, when I was growing up, I had little notebooks that I’d write songs in. And the songs would become poems, and the poems became stories, and it was a natural progression.

When you grow up not seeing yourself represented in any form of media outside exploitative telethons, you get the urge to say ‘Hey, that’s not how any of this works.’ I’m here to tell my story because I don’t want to be forgotten, or be assumed to be a certain way when I’m not.

The Pretty One is about our need to change the culture and the ideas that shape the way we see disability, because they’re harmful. The Pretty One is about joy, and about finding a way to the other side of what is self-hate or poor self-esteem.

The narratives we usually see are about people with disabilities who hate their bodies. We often see that in movies, where a disabled character wants to die. I wanted to showcase how someone who feels those things comes out of it—and the work that takes—and the process of getting to be a person who is very much joyful and happy and full, in a way she never was before.

Obviously there’s going to be a bit of heartbreak and loss and grief. But ultimately The Pretty One is about joy.

BLOOM: So the book is written as a series of essays?

Keah Brown: It’s a collection of 13 personal essays, at this point. I'm not sure if that will change. We’re shooting for a release date of spring 2019.

BLOOM: You’ve written about having cerebral palsy. How does it affect you?

Keah Brown: I have hemiplegia, so it affects my right side. I’m able to walk, but I need to take breaks, and I get aching limbs and arms and hips. But at this point, I don’t use a mobility aid.

BLOOM: Last year you wrote a beautiful piece on Roxane Gay’s book Hunger in The Rumpus. It begins like this: ‘There’s a moment in every day where I think of my younger self—the fifteen-year-old me, the sixteen-year-old me, and the twenty-year-old me who prayed morning, noon, and night to be rid of my body. When I was younger, my scars, bruises, bent fingers, limping leg, and crooked lips disgusted me.’ In the essay, you write about your desire for invisibility when kids would ask you what was wrong with your body.

Keah Brown: Because I wasn’t surrounded by many other disabled people, let alone kids, I saw my disability as this thing to run away from, or to try to pretend that it wasn’t there. I had a very happy childhood from kindergarten to Grade 5, and Grade 6 was when I realized I had a disability.

With my other siblings—I have a twin sister and a brother—they’re able-bodied and my mom never treated me any different. Whatever they got I got, and we never talked about my disability in terms of it being this difference and that difference was bad.

Then when I got to middle school and kids made fun of me in the cafeteria, it kind of stuck with me. If someone made fun of this thing that was different, then it must be bad. So I spent a lot of time wishing to be invisible and wishing that I would wake up in another body. I felt I was being punished in the body I had. I wanted to be just like everyone else and to blend in. I was tired of people asking questions and staring at me.

BLOOM: What would you tell other children whose differences make them want to disappear?

Keah Brown: The best advice I can give is that they are who they are, and all that they are is enough. It’s not only enough, but it’s beautiful and worthwhile, and their bodies tell a story. It doesn’t matter if they don’t look like a certain person, or look a certain way. What matters is that they figure out who they are, and celebrate that. That is the person they're stuck with for the rest of their life, so it’s important that they learn to love that person.

BLOOM: You’ve written about how when children don’t fit conventional European white standards of beauty, there’s almost an expectation that they should hate their body.

Keah Brown: Absolutely. There’s this idea that if you’re different you should feel bad about being ‘other’ and breaking the mould. When you do that, people don’t know what to do with you. They assume you don't know what to do with yourself, and you should be uncomfortable, because they’re uncomfortable. To those of us who are different, our differences make us unique. Those unique things make us who we are, and who we are is enough.

BLOOM: You created the Twitter campaign with the #disabledandcute hashtag. What did you hope to achieve with that?

Keah Brown: I didn’t hope to achieve anything. I started it for myself and posted four pictures and the hashtag, just to celebrate myself and other disabled men, women and non-binary people. I wanted to say ‘Hey, I finally feel good in my body and you should too.’ Then I left Twitter and went back to an essay I was writing on a deadline.

When I came back, #disabledandcute was trending. By the end of the week I was interviewed by a bunch of different publications, and I learned that #disabledandcute went viral and spread from Twitter to Facebook to Instagram and Tumblr.

I began it to try to celebrate myself, but it became a thing where all disabled people could celebrate themselves. That’s what I’m grateful for. It will be a year this Monday that I posted it.

BLOOM: As a child, how did you experience racism and ableism.

Keah Brown: I didn’t really know what they were as a child. People would speak to me really slowly and would be condescending, as if they assumed I didn’t understand them.

I was never ashamed of being black and in terms of racism, we were sheltered from most of that in my childhood. There were small comments that people made. But never anything that I really had to internalize or keep to myself, in the way I had to with things people said about my disability. Disability as a 'bad' thing outweighed my blackness.

I was always very proud of being black and confident that being black was something beautiful. I grew up in a household of other black people who loved themselves, so I loved myself too. Our blackness was something we had in common, whereas disability was the thing we didn’t share.

I felt disability separated me from my twin sister. I just wanted to be like her and look more like her. I wanted all of these things I thought she could have that I couldn’t have.

BLOOM: Was disability accepted in your family?

Keah Brown: I did feel accepted. I have a humongous family and they were very much always ‘That’s just Keah. It’s who she is.’ My disability wasn’t like a thing that people were weird about. It was what it was. It wasn’t something we addressed or ignored, or pretended that it wasn’t there. It was seen as an aspect of me, but it wasn’t all that I was.

BLOOM: Did you ever feel your disability was marginalized in the black community?

Keah Brown: Not really. The majority of the comments I received as a child—and even now—come from white people. People of colour tend not to say much to me about my disability, unless they know me. The stares and the mocking and the talking slowly is a thing a lot of white people have done. Most of the rough experiences I’ve had have been from white people.

BLOOM: You’ve written about lack of accessibility. What message does it convey to people with disabilities?

Keah Brown: In my freshman year in high school I had a big surgery, and then I had to come back a year later and have a plate taken out. That’s when I realized how inaccessible the building was. There was a kid named Mason who used a wheelchair and I used a walker, and we had to go to the back of the school just to get into it. The elevators were really slow and it took us longer to get everywhere.

These are all things abled people take for granted—that they can get to and from places without any problem.

Today, it's still a really big issue for me. I can’t get down the stairs safely in a mall. Going up the stairs is fine, but coming down I have to reach my left hand over my right arm to hold the rail.

What was good in my childhood was that there were always people around to help me before I knew I needed help. They helped me figure out ways to trick an inaccessible system. That's how I figured out how to put my left hand over my right one to get down stairs.

Or if I’m standing for a long time, I shift my weight from left to right so that my whole right side isn’t aching by the time I move again.

I spend a lot of time in my house, which is very accessible, and in my room where I write. It’s a single level house with a basement that's easy for me to get down to.

I’m able to figure out how to navigate in my own house. The issue starts when I get to public places and they don’t have the same accommodations.

BLOOM: I read that you went to a largely white high school and college. How did that affect you?

Keah Brown: I think what I know now I couldn’t articulate then. When you don’t see enough people who look like you during the day, you start to retreat into yourself. Even though there’s nothing wrong with my black skin, you keep some things to yourself, because you’re trying to navigate a world that's vastly different from the one you knew before.

In a primarily white institution, I was taught mainly about white writers and journalists. I had to look outside the classroom for writers of colour, and to find heroes of my own who looked like me.

The way I handled those experiences was to lean on other people of colour who could commiserate with me. They understood what it’s like to experience multiple micro-aggressions from other students.

BLOOM: Were these people outside the school?

Keah Brown: No, they were the few other black students. We’d acknowledge each other with a head nod and eat lunch together and go to the movies and hang out.

BLOOM: You said that your book is about the process of getting to a point where you love your body and celebrate it. How did you get to the other side?

Keah Brown: Girl, a lot of tears and definitely counselling, and trying. I tried for the first time. What I’ve found is that sometimes you want something but you don’t really work for it. I had to really confront my own problems with disability, and not just my own disability.

I had to confront my own internalized ableism and views about what disability is and what it can be in order to make myself a better person.

I got tired of living my life like it was the world’s worst punishment. I got tired of getting up and feeling like ‘I hate you, you’re ugly,’ and insulting a body that was doing the best it could to keep me alive.

I thought I was giving myself these insults to prepare myself for when other people said them. But it never made me feel better.

I had to actively try to be kinder to myself. I found something I liked physically and mentally about myself, and worked every single day at it. Self-love and self-worth is an everyday practice. This is not a one-time thing. It’s a constant.

BLOOM: You mentioned counselling was helpful. Was it hard to find a therapist who understood about disability?

Keah Brown: I went to counselling at college because it was free. The first counsellor, while I’m sure she was a lovely person, didn’t work out. She treated me as though my self-hatred was something I should just be over.

That’s an issue that sometimes happens when a person doesn’t have physical disabilities. They don’t feel comfortable around disability, so they want you to be over it, and not talk about it.

The second counsellor I had was brilliant and did a really good job.

Counselling helps. I also had to do a lot of internalized work where I acknowledged that I’d met these disabled people online that I love, and they mean the world to me, and it was time to start looking at myself with that love.

Throughout my time of self-discovery I also read books and found fictional characters to fall in love with and grow with. I found bits and pieces of things they did that I thought I could emulate.

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'I was afraid to make a mistake, so I hid behind the camera'

By Louise Kinross

Sweet Dreams for Chiyo is a film that follows the Ehara family when their toddler Chiyo is diagnosed with Type 1 diabetes. Parents Rhiana and Kaz are filmmakers, so Kaz gets behind the camera as the family—which includes Cai, then three months—adapts to checking Chiyo's blood sugar around the clock and counting every carbohydrate she eats. Missing a hypoglycemic episode—when blood sugar dips dangerously low and the person requires immediate sugar or a high-carbohydrate snack—could be deadly. The film follows the family over a six-year period and airs on CBC on Sunday, February 4 at 9 p.m. BLOOM interviewed Kaz about his role as dad and filmmaker.

BLOOM: Why did you initially begin filming your family when Chiyo was diagnosed?

Kaz Ehara: I think this was my initial coping mechanism. When something unknown happens to me or my family, I often capture it by image. I trained as a photojournalist. I have a Japanese family and when my grandfather developed dementia I started filming as a way to understand what was happening more objectively. I discussed with Rhianna capturing our daily life, and I think we also used the filming sessions as an outlet to express our fears and feelings. A lot of the interviews were conducted at night after the kids went to bed.

BLOOM: We quickly see the strain in the film of monitoring, weighing and recording everything Chiyo eats, and late nights where Rhiana is still awake at 3 or 4 in the morning. I think it’s common in families with chronic conditions for the mother to jump in and become the expert and do all of the health-related tasks, and it’s sometimes harder for dads to find their role.

Kaz Ehara: Rhiana was dealing with the daily treatments so beautifully, and she was definitely comprehending the situation much better than I was. I started losing some confidence, especially in the beginning. With Type 1 diabetes, the stakes are high. If we miss one check at night, it could be fatal. The fear was there. I think mainly I was afraid to make a mistake, so I hid behind the camera.

I think I said in the film that, without realizing it, I started to abuse my position. I was obsessively filming, because that became my coping mechanism.

BLOOM: Well, I think that’s understandable, as it was something you could do well.

Kaz Ehara: I started adding more pressure on Rhiana and now I know it was wrong. I was a filmmaker, and if I’m filming, I’m working. That’s how I justified my actions when I wasn’t supporting her enough.

When Chiyo was born, I changed diapers and fed her and was able to be independent with her. I would compare that with my childhood in Japan with my father, who left for work early in the morning while we were asleep. Because I’m self-employed, my hours are much more flexible. In comparison I thought I was doing really well.

But when Chiyo’s illness hit it put a lot of stress on the family. I didn’t realize the family was close to falling apart. When Rhiana would cry for help, I couldn’t hear her voice, because I was too busy listening to my own inner voice thinking ‘I’m also tired and I’m also working hard.’ I would keep filming, but without any desire to actually watch it.

One day my friend asked how things were going and I decided to watch some interviews. They were emotional and capturing Rhiana’s feelings. It was almost like watching someone else’s life on the screen in a very objective way. I had no baggage attached to me. My inner voice wasn’t there, and I suddenly realized ‘Oh my gosh.’ I felt a pain. That was the turning point. I wanted to change.

BLOOM: Did you or Rhiana have contact with other families whose children have Type 1 diabetes? I don’t recall that in the film.

Kaz Ehara: We had some mixed experiences with that. Our primary reason to get in touch with parents in our community is to get the latest information on technology. We decided that to keep a happy family, we couldn’t let diabetes becomes the main priority in our life. If we started fixating on diabetes care we would neglect our relationship as husband and wife, and as parents. We had very limited mental space in our brain and, for us, we needed some distance.

BLOOM: So you didn’t want diabetes to become the only focus.

Kaz Ehara: I think the word has a strong power and if you talk about certain things over and over again, that becomes part of your identity. We didn’t want our daughter to feel like her identity is with diabetes. We wanted to focus on who she is, and the diabetes is always there to come along with her. We never neglect diabetes or ignore it. But we needed to keep a healthy distance for our sanity, and so we can focus on the bigger picture of keeping our family as happy as possible.

Maybe we are unique in that way. We didn’t want to be 'diabetes parents.' We wanted to be parents first. We have another son who doesn’t have diabetes and we needed to have a bigger perspective than that.

Rhiana was very insightful in that her parents got divorced, while my parents stayed together. I didn’t know the warning signs for divorce, but she said family begins with a strong healthy couple as a foundation. If we neglect our relationship, then the family shakes. When our family was almost falling apart, I was only caring about my sanity and making excuses. I’d say: ‘We don’t have time to go out for a bite’ or ‘We can’t hire a babysitter that we can trust.’

Since then, we started increasing our comfort zone, and suddenly we discovered a babysitter who has Type 1 diabetes. And we started to see that when we changed our attitude, things we thought weren’t possible were. Recently our family went to Mexico for two weeks backpacking in a rural area. It took a lot of preparation, but our world is widening again.

I think I didn’t want to be part of a parent group that was focused only on diabetes.

BLOOM: In one of the scenes in the film, Chiyo needs her insulin pump changed right away—rather than at night when she’s asleep. And she’s crying and hides under the table and begs her mom not to do it. Even your dog Ruby looks really upset. How do you manage those moments when you need to do something that hurts Chiyo, but that in the long-run is necessary to her health?

Kaz Ehara: I was afraid and I had no idea what to say to comfort her. I think I was hiding behind the camera. And even I looked at my little son that day and observed he was much more of a brave participant than I was.

BLOOM: Do you and Rhiana do anything specific to cope with stress?

Kaz Ehara: We try to exercise. Now, I’m able to be independent when it comes to the diabetes care, so we try to give each other space as much as possible. For example, Rhiana went to Guatemala to see her friends who were teaching there. And I went to Japan. Our coping mechanism is to see the world as bigger than ours. We had to come to the realization that what we were dealing with is not the end of the world.

Another thing we try to do is not to fixate on doing everything perfectly. There are over 100 factors that can affect blood sugar, including hormones and emotions. We can’t be reactive to each little incident, but try to see more of the bigger picture. We need to tell each other we’re doing a good job.

BLOOM: The film covers diabetes from a sibling perspective. We can see how knowledgeable Cai is about his sister’s care, and how he often tries to comfort her. But we also see him feeling sad and resentful because Chiyo gets candies as ‘medicine,’ or seems to get more attention than he does. Is there anything you do to meet Cai’s unique needs?

Kaz Ehara: Part of our strategy is that we try to separate the kids as much as we can. For example, we take them out separately, so Cai can have some free time and space separate from the disease.

Rhiana will also ask Cai: ‘Are you tired of being on our team?’ Because we ask him to be on our caregiving team and we need extra eyes to support Chiyo. But before being part of a caregiver team, he’s a child first, and we want to make sure we don’t screw up that priority.

BLOOM: Later in the film you take the night shift and are up till 3 in the morning because Chiyo’s blood sugar is very low.

Kaz Ehara: Usually I took the morning shift and Rhiana stayed up late, and that’s partially because she was a night owl to begin with and I was more of a morning person.

The problem is that sometimes you can’t bring Chiyo’s blood sugar level to the point where you feel comfortable to sleep until 3 or 4 in the morning. We have no idea why the blood sugar is acting this way, but we can’t leave it. If it’s too high, you worry about long-term complications and if it’s too low—this could be fatal.

It feels lonely when you’re the person most responsible. We’ve given up on the idea that it will be easy at some point. We have to accept that it is what it is. Acceptance is very key. In the early days, we kept changing technology with the hopes that it would make things easier. But we only got more data, and not the ability to analyze the data. Too much data is overwhelming, and just makes you fixate more on diabetes.

BLOOM: There’s a moving scene where Chiyo is going off to school carrying a large yellow box for her needles. And Rhiana talks about how she feels like a freak when she’s the only mom who has to stay at birthday parties to count Chiyo’s carbs. How do people who don’t understand diabetes respond to you out in the world?

Kaz Ehara: In the beginning, birthday parties were very difficult. We’d have no idea what food was going to be served, how many carbs were in each food and also, people usually serve buffet style, so we didn’t know how many portions of the items our daughter would eat. We could have talked to the parents before the party, but we didn’t want to be in the way. Rhiana created an art out of carb counting and now she can get in and out quickly.

In general, people have responded very nicely to us. We go on all of Chiyo’s school trips because the nurse can't, and we see how the other kids are helping and are curious about her condition. Chiyo’s friends are very empathetic.

One of the things we worried about is that Chiyo is in a portable outside the main school building. We worried about when she might have to walk to the bathroom, if she got weak. The school created a special buddy system so that whenever they go out of the portable, they go in twos. We are very fortunate with the people around us.

BLOOM: Are there ways that Chiyo’s diabetes has made you a stronger family?

Kaz Ehara: I think we definitely built up a resiliency and became stronger as individuals. I think we also became more sympathetic to others who have different conditions. We talk with our kids about how everyone has something to deal with. We’re not the only ones facing a challenge, and we can help other people. Overall we became stronger as a family because we were dealing with the same challenge as a team. The more experience you have dealing with conditions outside your comfort zone, the more you gain confidence.

BLOOM: What did you learn by filming the movie?

Kaz Ehara: What I learned most was that in order to see things clearly or objectively, I had to be very flexible about the way I’m thinking about myself. One of the things I try now, when Rhiana needs to talk about things, is to be almost silent inside my brain. Instead of trying to understand in my mind, I’m trying to feel her pain.

The biggest thing I learned was that she doesn’t need my advice. She’s the one understanding her situation and her coping mechanisms, but she still needs someone to feel the same pain, or share the experience.

By looking at the footage, I could see that whenever she said something to me, I would say ‘You should do this.’ Rather than giving her reassurance—‘Yes, of course you can do that’—I was giving her opinions.

So now I try to clear my mind, almost like a white canvas, so I can be vulnerable to feel her emotions. Rather than listening to my brain analyzing and coming up with a solution, I try to create a field of empathy towards her.

That’s what I learned from looking at what I was doing in front of the camera.

BLOOM: What do you hope viewers take from the film?

Kaz Ehara: I hope fathers who have a child with a chronic illness, who maybe feel their contribution isn’t enough, that they can project themselves into me and feel the mistake I made. I think mothers in our society carry much more expectations and stress than fathers, so hopefully this film will open the eyes of fathers a bit and make them think about what kind of a father they want to be.

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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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Lisa Boivin paints stories about medical ethics beyond words

By Louise Kinross

Lisa Boivin is a member of the Deninu K'ue First Nation in the Northwest Territories. She paints image-based stories that explore the gap between medical and land-based, Dene ethics. She is a bioethics specialist and graduate student at the Rehabilitation Sciences Institute at U of T's Faculty of Medicine.

“Academics often want you to give an absolute, sweeping bioethical answer that fits into all circumstances, but there are certain land-based ethics that can’t be held in academic language,” she says. “So I translate them through painting. I situate my Dene experience and perspective in the paintings, and then I extract the story.”

Lisa is presenting the Town Hall session at the 12th Annual Bloorview Research Institute Symposium on Nov. 21. Her image above is called Holding Thunderbird.

BLOOM: Why did you study bioethics as an undergrad?

Lisa Boivin: I fell in love with the element of story—that ethics are held in the story of clinical narratives. As a bioethics student, we have all of this academic rhetoric around ethics. But I learned that the ethics are anchored in the story of the patient.

BLOOM: You mean that the most important ethics are found in a patient perspective?

Lisa Boivin: Yes. Clinical and personal hardship helped me to see ethics differently—things like informed consent. I had to read a lot of patient narratives to have a fundamental understanding of the sacred ceremony of informed consent.

BLOOM: What is the sacred ceremony of informed consent?

Lisa Boivin: It’s both parties coming together with complete understanding of one another’s situation, and a balance in decision-making. That’s something that’s hard to accomplish, for basic reasons. The patient isn’t a clinician, and doesn’t have the expertise that a doctor has in terms of the biology of what’s happening. But there’s also such a tremendous power imbalance between the two parties.

BLOOM: Can you describe your art?

Lisa Boivin: I came to know image-based storytelling through an inability to articulate academic thought from an Indigenous perspective. I’m not a classically-trained artist. I’ve only painted for three years. I’m a ‘60's scoop survivor from two generations of residential school survivors.

One of my professors asked me to write a paper on colonialism. I couldn’t do it. So I painted it. The paintings are born out of necessity, and are a way to communicate Indigenous perspectives to non-Indigenous colleagues. The one featured on the BRI symposium program is called Holding Thunderbird (see image above).

BLOOM: Can you describe what it means?

Lisa Boivin: From my teachings, Thunderbird is a very powerful being, the carrier of knowledge and the conduit between the creator and the people. Thunderbird is also the carrier of justice. With that responsibility comes great frustration.

I don't feel knowledgeable, I simply carry a knowledge that is unfolding in images I'm creating. I find myself frustrated often. Holding Thunderbird relates to me as a person who struggles in the academy.

BLOOM: In the academic world?

Lisa Boivin: Yes. The Thunderbird is me, and the woman holding Thunderbird is a professor. In the academy, I’m constantly expected to fit my Dene knowledge into a colonial format. That’s extremely oppressive and harmful to me.

BLOOM: Can you give an example?

Lisa Boivin: There are times when bioscience research clashes with Indigenous research methodologies.

BLOOM: And bioscience is always seen as supreme?

Lisa Boivin: Yes.

This painting was created to thank a professor who was helpful to me at a residency. The woman holding Thunderbird is the professor and all the flowers represent her knowledge. She’s keeping Thunderbird from flying away, and comforting Thunderbird.

She’s the first person that’s never asked me to change or do anything that would be harmful to the Indigenous knowledge in the images. That residency provided me with a healing, and a security I had never known.

For me, the painting represents the notion that we all have our own knowledge and our own knowledge systems. And for us to grow, we need support from people who have power in our lives. It can be a professor, a clinician, or a leader in our community. But the idea is someone holding space for us, as we are.

For this professor, I didn’t have to change or fit my knowledge into a colonial format. All I was expected to do was share my arts-based knowledge. I wasn’t sure if I was going to return to my academic program. And this was the reassurance I needed that I am knowledgeable, and that my knowledge has value.

BLOOM: This reminds me of how difficult it can be to talk about disability in a culture that doesn’t value it. It’s almost like I don’t have the words, sometimes, or I feel like I’m put on the defensive, in trying to convince people that there is value in a different way of living.

Lisa Boivin: This is the kind of damage that the medical model does to people with differences. What I’ve learned from my family is that an Indigenous perspective of wellness is much larger than the narrow perspective of the medical model. The medical model measures wellness as the absence of disease. From my Dene perspective, the measure of wellness is the ability to interact with the land.

My father had polio as an infant, and during his childhood he was seen as someone who was disabled. But when my father came home from residential school, he got on a dog sled. He became a champion dog racer and was no longer disabled. He didn’t consider himself disabled in any way. He just navigated the world differently.

I’m someone who has been diagnosed with a learning difference or cognitive disability. I have a different way of translating knowledge. I’m an image-based storyteller. There’s a reason I can’t interact with certain academic theories. The images came to life and were born out of necessity. If I could translate knowledge in an academic way, I would never have learned how to paint.

BLOOM: You said you only began painting three years ago?

Lisa Boivin: I had some artistic abilities as a child, but I stopped because I was bullied so much. I shrunk, and the art was gone.

I feel the beauty that is translated through my images comes from another place. It’s the ancestors coming through me. When I’m doing land-based activities, like anchoring bioethical theory or conceptions of wellness or rehabilitation in my painting, I’m no longer disabled. My mind is clear.

BLOOM: You spoke about your dad’s physical disability, and how through dog sledding, he was able. How do Indigenous people view intellectual disability or other types of disability?

Lisa Boivin: There are different Indigenous perspectives on disability and wellness. You’d have to take the time to research those. There is Navaho literature on autism and other intellectual disabilities.

Of course, any Indigenous person would want someone else to embrace a notion of wellness that will benefit them and their family.

Nothing would make me happier than if someone threw away the medical model that’s measuring who they are as a person.

Any Indigenous person would want people to embrace who they are, or to create their own idea of wellness. We have to snatch as much happiness as we can. My dad walked with a limp and had varying degrees of mobility, but that never affected his understanding of his wellness.

My wellness comes from an ability to interact with the land—to understand where I am in the world, and how I fit in and what my duties are. My duty is to be an image-based storyteller.

In the Navaho literature, they don’t present an idea of correcting behaviour. You are who you are, and you contribute where you can.

You move differently, you speak differently. The eight-year-old boy in me says: ‘You have a difference, you do different stuff.’

BLOOM: I love that. There’s no judgment in it.

Lisa Boivin: It really is that simple. Having a learning disability, my conception of disability in the past was that I was academically inferior. I had an inability to perform as well as other students.

An understanding of ‘doing different stuff’ has really helped me. In my graduate studies, I have come to know that my GPA is not an accurate measure of my knowledge. I don’t have great grades and my ideas are resisted constantly by my peers and many of my professors. But people seek me out to speak at their conferences and events.

In November, I'm keynoting The Ontario Psychiatric Outreach Program's conference and Woodsworth College's annual accessibility conference. I also did a centre talk and taught two arts-based workshops at St. Michael’s Hospital in the summer. That professional affirmation keeps me from giving in to the notion that I’m academically inferior to members of my cohort.

BLOOM: We did a narrative group for our inpatient nurses, and in addition to writing about their emotional experiences caring for children and families, they drew comics to help them see from different perspectives.

Lisa Boivin: In my arts-based workshop, I ask clinicians to create a visual narrative of themselves. Drawing yourself really expands the idea of practice. I ask them to draw who they are as an individual, how that influences their practice, what they want to contribute to their working community, and what they want to give to their patients. That’s a pretty big task to do in an hour! But it teaches people to be more reflective.

There’s something about drawing a piece of yourself where you have to capture a piece of your humanity. Within that humanity is vulnerability, but also an understanding of your responsibility as a clinician.

For me, I have my own image, and sometimes I have to go back to that image to remind myself to be better at what I do.

Being the frustrated Thunderbird that I am, there's a hawk feather in my self-portrait to remind me to speak gently and clearly. I also have a clipboard which represents consent. I’m always trying to build a place where clinicians can understand what consent it.

BLOOM: What do you hope to do in the future?

Lisa Boivin: I want to share information about Canada’s colonial history and how that creates clinical barriers between a clinician or therapist and a patient.

There are centuries of failed relationships between what would become Canadian institutions and Indigenous people. For hundreds of years, there’s broken promises, institutional racism and mistrust. And this still takes place in medicine today. I am horrified when I read stories in the media about Indigenous patients who die in ERs because they're seen as drunk or drug-seeking. When an Indigenous patient sees that in a media story, it influences how they interact with a doctor.

Medicine has also been used as an instrument to remove Indigenous children from their homes, because it's perceived that Indigenous parents can't look after their children. This was certainly the case for my father, who had over a dozen surgeries to correct his mobility impairment.

I’d like to promote an understanding of a wider notion of wellness. As we spoke of earlier, the medical model is very simplistic. It’s the presence or absence of disease. There are wider models of wellness.

For many Indigenous people, the ability to interact with the land is a measure of wellness. An Indigenous worldview includes the land, animals, community and nature. An ability to contribute to community is central to wellness, and that can be any contribution.

I’m a health-care educator and I will continue using arts-based practice to educate about colonialism and how that exists in medicine.

BLOOM: I think your ideas could be helpful to any patient, including non-Indigenous patients.

Lisa Boivin: Imposing a medical model—one standard or one measurement—on any group of people is really harmful.

For my first two years as an undergraduate student, I struggled. It wasn’t until I was able to understand certain concepts and put them into images that I was able to thrive.

Learn more about Lisa’s experience and insights in her Ted Talk: Painting the Path of Indigenous Resilience. In this video, she describes the image Sharing Bioethics below as the overlap between a traditional Dene circle of medicine and an academic circle of medicine. "We all hold circles of medicine," she says. The photo below is by Erin Howe at the University of Toronto.

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Designs make wheelchairs a work of art

By Louise Kinross

Izzy Wheels is a business that sells designer spoke guards created by Irish sisters Ailbhe and Izzy Keane. Izzy uses a wheelchair. Growing up, she loved her wheels, but it bothered her that they didn’t reflect her personality and style. When Ailbhe was at design school, she was tasked with creating something to enhance the lives of people of people with disabilities. She and Izzy brainstormed, and came up with art-decorated spoke guards. After Ailbhe graduated, the women created a business. Ailbhe works at Izzy Wheels full time, while Izzy balances her university studies with part-time work there. BLOOM interviewed them both by e-mail.

BLOOM: What bothered you about wheelchair design in the past?

Izzy Keane: The thing that bothered me before Izzy Wheels was that it was really difficult for me to visually portray to the world the positive relationship I have with my wheelchair. Until I put on my first pair of customizable spoke guards, my wheelchair looked like a lump of metal made in a hospital. To me it has always been so much more than that. I’ve always wanted the opportunity to make my chair look nice, as a sign of respect to it. Now at first glance people know that I love my wheelchair.

BLOOM: Do spoke guards have a function?

Izzy Keane: Spoke guards protect the wheels of a wheelchair from being damaged and now, thanks to Izzy Wheels, they act as a means to enhance a wheelchair user’s outfit.

BLOOM: How did Ailbhe come up with the idea of creating stylish spoke guards in her art program?

Ailbhe Keane: My sister Isabel has been in a wheelchair all her life and growing up it really frustrated her that she didn't have a way of customizing it. When I was in my final year in the National College of Art and Design, I was offered the opportunity to undertake a self-directed project to 'Enhance the lives of people living with a long term, lifestyle related health condition.’ As soon as I came across it, I knew that it was the perfect opportunity to incorporate my knowledge of my sister’s disability into my work and Izzy Wheels was born! After I graduated from college I decided to turn my project into a business.

BLOOM: What are the spoke guards made of and how is the design put on? Are they for kid and adult chairs?

Ailbhe Keane: The spoke guards are made from plastic with very high quality finishing so that they are very easy to wipe down and clean. They have velcro straps at the back to fasten the spoke guards to the wheels of the wheelchair. Yes, the product comes in three different sizes to cater to children, teenagers and adults.

BLOOM: How do you find artists to design them?

Ailbhe Keane: As a graphic designer myself I have a lot of friends and valuable contacts in the art world. I spend time looking through artists’ previous work to see if I feel that it fits in with the style and ethos of Izzy Wheels. We also get messages from designers all over the world who have seen our work and want to be part of our upcoming collections.

BLOOM: What is the range of cost? Do you ship internationally?

Ailbhe Keane: Yes we ship internationally. The spoke guards come as a pair, one for each wheel and cost between €119 (CDN$180) and €139 (CDN$211).

BLOOM: What is your best-selling design? Does Izzy have a personal favourite?

Izzy Keane: All of our designs are extremely popular. Currently our best seller is the rainbow mandala. Personally, I don’t have a favourite design, as each of the sets coordinates with a different outfit from my extremely colourful wardrobe!

BLOOM: How do you feel differently when you’re out wearing these spoke guards?

Izzy Keane: The spoke guards make me feel extremely confident because when I meet new people my cool wheels are a great conversation starter.

BLOOM: Does the public have a different reaction to your wheelchair when you have the designs on?

Izzy Keane: Definitely. Having my Izzy Wheels on is like telling people that they don’t have to be afraid to acknowledge my disability. It diminishes any potential awkwardness that another person who is inquisitive about my disability may feel. People now are more at ease when asking questions about my disability.

BLOOM: Is Izzy Wheels a business? I noticed it said you donate to charity.

Ailbhe Keane: Izzy Wheels is a business as well as a social enterprise. We give donations from all of our sales to disability charities around Ireland. The proceeds from our ‘Roll Models Collection' are donated to the Irish Wheelchair Association.

BLOOM: What are your plans for the future? Do you both work at Izzy Wheels full-time?

Ailbhe Keane: We are creating a global fashion brand for wheelchair users. Our plan is to expand our business worldwide. We already have a lot of exciting surprises being launched in the near future. I work in the business full time and Izzy works in the business part time. She is also in university studying sociology and politics, French and law.

BLOOM: Why are so many disability-related products ugly?

Izzy Keane: I think the reason why so many disability products are ugly is because when they’re being designed all of the energy is put into their functionality and their aesthetic is forgotten.

Izzy and Ailbhe won first place in the 2017 Accenture Leaders of Tomorrow awards.

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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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'When I'm swimming, I feel normal'

By Louise Kinross

Swim Team is a gorgeous documentary about a competitive New Jersey swim team made up largely of Latino and Asian youth with autism. It focuses on three of the team's stars as they prepare for competition. "I'm not like other teenagers," says one of these boys. "I'm autistic. When I'm swimming, I feel normal."

We also get to know the boys' parents, who talk about their experiences raising them and their frustration with a lack of school preparation and support as they enter adulthood.

The film was shown at Holland Bloorview a week ago as part of the ReelAbilities Film Festival.

I'm setting up an interview with director Laura Stolman. Stay tuned!

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Immerse yourself in disability art

The ReelAbilities Film Festival is holding its free Family Film and Art Day at Holland Bloorview on Saturday May 13 from 10 a.m. to 4 p.m.

Five films are being screened as part of ReelAbilities, which is presented by the Miles Nadal JCC. This is a great opportunity to see films about the lives, stories and art of people with disabilities and Deaf people.

There are also inclusive art activities for the whole family at Holland Bloorview and a lunch-time youth panel on arts and accessibility.

Reserve your free tickets at toronto.reelabilities.org.

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

By Louise Kinross

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

BLOOM: Why did you decide to write this play?

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

BLOOM: What is the play about?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Dress rehearsal

By Louise Kinross

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

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

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

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In Brazil, a 'disabled chick' draws about stigma, love

On her blog, Vanessa Krubniki tags this comic under "love," writing: "...I have worried myself sick about how I am supposed to convince someone to date a disabled chick who can't even tell a joke. You might think that there are people out there who enjoy a darker approach to things and I supposed that is true, but the fact is, everyone likes fun people. And I, I have too much real life in me, too much blood under my fingernails."

By Megan Jones

When Vanessa Krubniki creates a comic, it’s more than just a drawing: it’s a lesson, a memoir, an emotional outpouring. The 23-year old psychology student from Curitiba, Brazil has spinal muscular atrophy, and uses her artwork to capture what life is like for young women living with physical disabilities.

The comics follow a character named “Cassie Q,” detailing her interactions with family and strangers and her thoughts about everything from love and work to depression, stigma and self-esteem.

Originally a painter, Vanessa first tried to her hand at drawing comics about a year ago. “It started off as a game,” she says. “Something to do for fun.” But as she showed more friends her work, they encouraged her to post her drawings online.

Today, Vanessa regularly shares her comics on her blog, which has gained followers from Canada, the United States and Brazil, among other places.

She readily admits that while her character has a different name, they’re very much the same person: everything that happens in her comics has happened to her in real life. For that reason, her artwork is extremely personal. It allows her to vent about the things that frustrate her, and helps her to process the circumstances that make her sad.

The personal nature of her work has resonated with readers. Vanessa says she’s spoken with other young people with disabilities who have connected with her online after checking out her blog. “Lots of people say the comics make them feel understood,” she says. “It’s really special to hear that.”

Vanessa knows what it’s like to feel like an outsider. In Brazil, she says, disability is largely misunderstood, and many people with special needs lack support.

She’s not the first to make this observation. Cities in Brazil have long been criticized for their low level of physical accessibility. According to a 2015 BBC article, only seven per cent of working-age Brazilians with disabilities have completed any kind of higher education, and only two per cent are a part of the workforce. And as NPR reported the same year, a poll conducted by IBDD, one of the country’s disability advocacy groups, revealed that a staggering 80 per cent of people with disabilities didn’t feel like respected citizens in their home country.

When these factors pile up, Vanessa says, many young people with disabilities wind up feeling alone. She herself isn’t in touch with any local disability activists, and says she only has one other friend with special needs who she talks to regularly.

In order to cope, she, like her readers, has turned to the Internet to connect. Vanessa says she reads articles by disabled journalists which help build up her own activist framework.

“Hearing life stories from the perspective of someone with a disability validates my experiences,” she says. “I often feel very disconnected, but reading these things, I get a sense of belonging, and I can connect my experiences to a larger oppressive system.”

Knowing that others are looking to her comics as a point of relation, Vanessa fears that her art isn't uplifting enough. There’s a pressure on people with disabilities to be inspirational, she says, particularly if they’re building a public presence. But a sunny outlook isn’t always realistic. There are days when Vanessa finds it difficult to be hopeful, and she doesn’t shy away from that in her work.

As a result, her comics can sometimes seem bleak. In a description that accompanies her post “The Complicated Life of a Bug,” for example, she writes: “Everyone has their little web of aggravators, things that stop them from moving forward…. Sometimes with disabilities, this web gets so detailed and so layered that it might seem impossible to move. I fear that one day it will be impossible to move.”

With posts like these, Vanessa says she occasionally worries that she’s reinforcing the idea that life with a disability is automatically a bad one. “I think many of my experiences with a disability have been negative so far,” she says. “But that’s not how it has to be. Society has to change.”

The topics she addresses most frankly, perhaps, are sex, intimacy and love. Like many other 20-somethings, the concept of dating takes up a lot of mental energy: one of her biggest hopes right now is that she’ll find a romantic partnership soon. Unlike most though, she doesn’t feel she can’t openly discuss her needs with very many people. In fact, most people, Vanessa says, assume she doesn’t care about sex or relationships.

“It gets overwhelming when you have a very central longing and you can’t talk about it,” she says. “People with disabilities don’t really have room to address those needs. My comics are a way to bring that out into the open.”

Whether it’s through expressing sexual desire, dissatisfaction with social structures or frustrations with family and friends, Vanessa encourages others to elevate their own voices.

“Young people with disabilities should take their power back,” she says. “Standing up for yourself is hard and can be very stressful. But sometimes you have to act against the status quo. If something isn’t working for you, don’t just let it go.”

The comic below, called Cassie's Folding is tagged under "depression." 

"In my life I have been folded. It's kinda like when it's simply not okay to be you, and not even knowing what to say or what to dress, because any sense of confidence has been systematically chopped off. In my life I have been folded. In half, and half, and half, and half. And what I had left was a Q for a signature."

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