Jess translates studies into words that families understand

By Louise Kinross

Jess Silver is passionate about health and how we translate research into words the average person can understand. She works as a research assistant in Holland Bloorview’s Prism lab, where one of her roles is to write and edit materials targeted to youth and families. We spoke about how her own experiences growing up with a disability inform her work.

BLOOM: How did you get into this field?

Jess Silver: My passion with medicine and health came out of my own experience growing up with cerebral palsy. I was always looking for other avenues to improve my own situation. I wanted to go to medical school, but I knew that would be challenging because of my physical limitations.

I found out about a medical communications program at the University of Chicago on how to create content that will be easily understood by the general public. I graduated from that program, and now in the work I’m doing, I feel I have a responsibility to help other patients and their families understand clinically what they’re going through. I’ve always been looking for innovative perspectives and solutions that can help me and benefit other people.

BLOOM: What is a typical day like for you?

Jess Silver: I may be editing or writing materials, or scoping out medical databases on a particular topic.

BLOOM: What’s an example?

Jess Silver: Right now I’m working on a project to see whether meditation can benefit a child using a brain-controlled interface to communicate. A lot of the work we do in the Prism lab involves developing technology that allows children who are non-verbal to communicate.

In general, I look at how to edit syntax and grammar and language to make it concise and understandable for the families we’re working with today.

One of my most interesting projects to date was working on an article about Holland Bloorview’s family engagement program in research. I was writing about what the family engagement program does at Holland Bloorview, but also including my own informed perspective as a patient.

BLOOM: Did you come to Holland Bloorview as a child?

Jess Silver: Yes. I went there mainly for physical therapy. I did physio and the Fit and Flex exercise program. I also saw Dr. Wedge for pain, and when I was older I saw Dr. Fehlings.

BLOOM: Did you feel you got the services that you needed?

Jess Silver: Yes. I felt the resources were there. But as a family, we were always looking for more. We believe in Eastern medicine, and we were always looking for alternative approaches to compliment the conventional ones.

BLOOM: Was it challenging for you to move to adult care?

Jess Silver: There were gaps. My parents and I had to do everything on our own, in terms of finding who was going to help me, and what was out there to benefit me. We did receive services through the transition team here, but when I went to university, I found all of the advocacy, and figuring out how everything would work, and how I’d be integrated, fell to me. I felt like I was well prepared, but it I still found it incredibly challenging.

I did my undergrad at Glendon College, and I was the only one in a wheelchair at my campus. I had to explain to everyone that these are my challenges, this is what I need assistance with, and this is how we can work together. Then it was trying to get people to realize that although I have this challenge, it doesn’t mean I’m so different from you. I’m here to get my education.

BLOOM: What is the greatest challenge of your work with the Prism lab?

Jess Silver: The most challenging thing is not having an engineering background, and having to understand the terminology and the workings of devices that are created in the lab. You need to understand protocols for how to develop materials that are digestible for patients, but you also need to understand yourself how this device works and is constructed. Most of the other staff are engineers.

BLOOM: I’ve always had a pet peeve with academic language. I wish we could see lay language in journals.

Jess Silver: It does make things more difficult. What I find so rewarding now is being able to understand that language and, because of my background, knowing how to present it in a way that everyone will understand. When I was a kid and didn’t understand, I'd say ‘Whoa, what did that physician or specialist just say?’ But now I know what they said and it’s rewarding to be able to translate it.

BLOOM: You mentioned that you work remotely?

Jess Silver: Yes. I live in Thornhill and it was difficult for me to commute every day. Also, because of my physical needs, I need assistance from someone for my personal needs. Working remotely allows me to do what I have to do in order to have my quality of life, but still work.

One thing I do find challenging is not being able to be at every meeting or event. But the team is very open to it and accepting. It’s just my responsibility to remind them that I have to be on the meeting with Zoom, or I need to access certain materials.

BLOOM: What’s the greatest joy of your job?

Jess Silver: It’s to know that I went from being a patient, and somebody who lives the experiences that many of our kids do, to working as part of the hospital. I can speak to many of our clients’ challenges through my own experiences, and am able to write in a way that can help a family understand a condition or be able to find the care or resources they need.

I also run my own non-profit for adapted fitness and sports called Flex for Access.

BLOOM: How does that work?

Jess Silver: It creates awareness and raises funds to facilitate adaptive training sessions for individuals who have physical challenges. So we would fund a person’s training, and connect them with a gym or studio that can do it.

BLOOM: I notice you use the word challenge and not disability.

Jess Silver: Yes. I feel that everyone has some kind of challenge, on some level, and mine is just more visible because I use a wheelchair. I never let my disability get in the way of things that I do and pursue. Just this weekend I went indoor skydiving. Through my job at Holland Bloorview, and running my own non-profit, I feel I’m an agent of change.

BLOOM: If you could change one thing about children’s rehab—or research into it—what would it be?

Jess Silver: That’s a good, but difficult, question to answer, because there are many things. I’d encourage people, if they’re given one diagnosis, or one option for rehab, or one way of thinking about a diagnosis, try not to be boxed into that. Okay, yes, this is what it is. But seek other options.

If I could change something in research, it would be to bring a more holistic perspective to the interventions offered as possibly being helpful. For example, the article I mentioned looking at how meditation can or can’t help kids communicate.

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A front pack takes Louise where she wants to go

By Louise Kinross

Louise Sertsis never saw herself as an entrepreneur. But that was before she was diagnosed with multiple sclerosis, and began using a wheelchair.

It bothered her that to carry a purse or bag she had to hang it on the back of her wheelchair, out of sight, and ask her husband—or a friend or stranger—to pass it to her.

“I felt very dependent on others,” says the Whitby, Ont. resident. “It gave me the idea of redesigning a knapsack that attaches to the front of the user, to promote independence and safety and the feeling that I can do this myself.”

For the last couple of years, Louise has developed prototypes of what she calls the Handi Pac, which is two bags in one, separated by magnets. She started a business, called Advanced Freedom. Next month, she's launching a Kickstarter campaign to fund production of the first 300 bags.

One part of the Handi Pac sits on your lap and is attached with a waistband secured behind your back with magnets, Louise says. “You’d put anything you’d normally carry in a purse on a daily basis in it”—like a wallet, keys, tablet, phone and sunglasses. “It’s attached to you, so there’s no concern about the bag falling off when you go over a bump. That’s what used to happen, when I placed my purse on my lap. And because the bag is attached, someone can’t take it from you.”

The second part is worn from your knee to the top of your foot. It carries 15 lbs—the equivalent of a carry-on bag at the airport—and is the largest wheelchair bag on the market, Louise says. It attaches to the users’ calves with a magnetic system. “It’s great if you’re travelling, or going to school or going to the gym.” 

The pack is made of water-resistant, durable cordura nylon. The large bag sits on your feet, so if carrying a heavy load, you may need to take a break.

Louise says she knew nothing about business—she studied science and psychology at school. “I had to learn everything from the ground up. I’m a sole proprietor.”

Online, she made a chance contact with a manufacturer of traditional backpacks that are sold in stores like MEC. “When I told him about my idea, he thought it was amazing,” she says. “I was missing the business side, and he mentored me. He’s made all of my prototypes.” 

The current design is sized for an adult, but Louise says a child-sized version is in the future.

Louise says the first time she tried a prototype she “jumped for joy. I was ecstatic because it worked so well for me that I knew it could help a lot of people. It was so gratifying to see my solution in physical form.”

Louise plans to sell her bags internationally, and finds herself on social media at all times of the day and night, answering questions from prospective customers. 

Check out this video of Louise demonstrating how to use the Handi Pac. You can find more information on her website, or follow her on Facebook.

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As a child, 'my strength faded away'

By Terrence Bishundayal

At the age of six I began losing my childhood.

In 2002, my family came from Guyana to Canada. I started first grade at North Kipling Junior Middle School. Immediately after, I noticed that I had trouble climbing the stairs. I would lose my balance and fall. My teacher suggested I walk on the opposite side of the stairs, while the class walked on the right, so I could take my time.

My legs hurt when walking long distances and I would ask to be lifted. I didn’t realize it at that age, but my muscles were getting stiff. Sometimes when I was walking I would trip.

In gym class, I couldn’t keep up with the other kids doing sports. My gym teacher told my parents she thought my shoes were too big. At the time, none of us thought it was anything serious.

By the end of Grade 1, I was using the elevator.

My dad took me to the doctor and he ran tests and referred me to SickKids. I had surgery which determined that I had Duchenne muscular dystrophy (DMD). This is the continuous weakening of all of the body’s muscles over time.

To be honest, as a kid, I didn’t really understand it.

By the spring of 2003, I was using a manual wheelchair. This confused the other students. “What’s with the chair?” they’d ask. “I’ve seen you up before.” They weren’t mean, but more curious.

The same thing happened when I was given easier things to do in gym class. If we were playing basketball, a hoop was put on the floor and if I got the ball in the hoop, that counted as a goal for my team. The students wanted to know why that just applied to me.

“I have a leg problem,” was my response. That was all I knew about DMD at the time.

In Grade 3, I was prescribed Deflazacort, which is a steroid medication taken by patients with DMD. My parents told me “If you take these pills, your muscles will be better.” I thought that meant I’d be like the other boys. But while they were getting stronger and able to do more physical activities, my strength faded away.

I was living with my cousins at the time, and one day we noticed that they were all growing taller and I wasn’t. It was the first time I noticed I was shorter than other kids. I didn’t know Deflazacort would affect my growth, and I wanted to be tall like the others. I was clearly upset about this and I became more emotional and sensitive.

The school had a large playground outside but I couldn’t play during recess. My wheelchair was hard to push over grass and a couple of times I flipped over. Many times I’d just sit by the door so when the bell rang I could get back to class quickly. In the winter, my wheelchair could get stuck in the snow or slide on ice.

In Grade 4, the teacher picked other students to help me at recess. She would assign one boy and one girl. I wanted to hang out with the guys, but often the boy assigned to me would say ‘I’m going over here to play basketball,’ or would just throw me off to the girl.

Then my homework started to pile up. My hands got sore when writing, and I couldn’t work at the same speed. I’d often do homework from 4:30 to 9:30 at night, and sometimes I still had to get up early the next morning to finish it. I didn’t know how to tell my teacher what was happening. I was the kind of student who didn’t want to show up at school with incomplete work.

Eventually I got frustrated and cried, and my mom called the teacher. After that my homework was reduced. For example, instead of 30 math questions, I’d do 15, or instead of a full page of journal writing, I’d do half a page.

Students started to tease me. I was gaining weight because I wasn’t getting as much exercise in my wheelchair. Nobody had told me anything about wheelchair sports. They called me fat and an emotional wreck.

Kids can be mean, and they didn’t understand what was happening to me. I did report it to the teacher when I thought a student was going too far, but it involved many students.

In Grade 5, the teachers began planning a three-day trip to Ottawa. I was excited to go, and it never occurred to me that I wouldn’t be able to. But I had to stay home because they didn’t have knowledge about how to do my personal care, and my mom was working. I was very upset about that.

If I was talking to a younger student with DMD now, I’d say to always report teasing to your teacher, no matter how small, because it can get worse if you don’t.

When you feel down or sad, it’s best to talk it over with an older adult who you trust. It might not be your parents, because they may be working, or you may be scared to tell them. When I tried to talk to other classmates about what I was going through, they didn’t understand. Their greatest worry was what they were going to do at recess, or getting a snack.

I was a patient at Holland Bloorview, and sometimes I was invited to attend events with other kids with DMD. But I didn’t want to take part in any of that. I didn’t want to talk about the pain I was feeling, and I didn’t want to look at someone older and to think “this is what will happen to me.” It’s kind of ironic, but I was scared of people with disabilities, because everyone was able-bodied at my school. I was the only one who was different.

My elementary years weren’t all bad, but many times I didn’t feel good. It was hard to have a disability when the other 800 children didn’t. Whenever I felt angry or sad, I would try to get back to a calmer mood. I never had any counselling. No one ever told me if you feel angry, there are things you can do, like listening to music.

Growing up I thought of myself as a storyteller, whether telling real stories or fictional ones. I was very big on movies, and I wanted to learn how to review them. I’ve just finished my second year in journalism at Humber College, and I’m learning how to tell stories in many different ways.

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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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How 'I became more than the kid in the wheelchair'

By Louise Kinross

Max Setka, 21, is in his second year studying journalism and history at Trent University in Peterborough, Ont. Max has a long history with Holland Bloorview as he was part of our integrated kindergarten program. We spoke about what it was like for him to transition to university with a physical disability.

BLOOM: What is your disability and how does it affect you?

Max Setka: I have arthrogryposis, and it mainly affects my legs. I wear ankle-foot orthoses every day to stand, and depending on the weather and how I’m feeling, sometimes I use a wheelchair. I used the wheelchair a lot last year when I was in residence. This year I’m often walking.

The campus isn’t completely accessible because everything was built in 1964. But all of the classroom levels are flat and there are elevators in all buildings except for two—and one of those doesn’t have classes in it. I managed relatively easily using the wheelchair last year.

BLOOM: What was the greatest challenge of moving from high school to university?

Max Setka: For me personally, it was discovering how to adapt to everything. I obviously was very excited, but then it was like ‘Okay, how do I get to this place or all these different places?’ There was also some general anxiety about being away from home. But I’ve gone to Camp Awakening for 10 years, so I was used to being away. It was basically: ‘How am I going to manage 11 months of figuring out how to get to places?’

BLOOM: Is speed an issue?

Max Setka: It is sometimes. I try to give myself a certain amount of time and not rush places. I’ve had a few times where I’ve come into classes late and I’ve apologized at the end and said ‘I’m not the fastest person,’ and that it might happen occasionally.

The big issue for me in residence was leaving myself time to plan ahead for what I needed for three classes, so that I didn’t need to rush back to my room in between classes.

BLOOM: Do you have any accommodations in class?

Max Setka: I get note-takers. I can type, but my hands aren’t the greatest at speed and coordination. In the first class the professor will ask if anyone is willing to type or write out their notes and submit to an online system. Having someone else’s notes at the end of the class or day is one of my accommodations.

BLOOM: Did you work with an accessibility office on campus?

Max Setka: Yes. They have an accessibility services office. You go to an orientation in July with them, before school starts, and they explain that you’ll be assigned an advisor who will help figure out what you need. Then at the beginning of September you meet with the advisor. My other accommodations are extra time for exams and I can use my computer for all exams.

BLOOM: Did you feel supported in your accommodations?

Max Setka: The support is less hands-on than in high school. But if I need anything, I just shoot my advisor an e-mail. All of my professors have experience dealing with things like this. Unfortunately, I’ve got one class where the person who volunteered to take notes stopped after the first two weeks. Luckily, with this class, my professor posts literally his entire lecture, so it’s not affected me as much.

BLOOM: Was it hard or easy to make friends in your first year?

Max Setka: It was fairly easy. You meet a lot of people in residence. Trent is very passionate about connecting people, so we did a lot of floor meetings and activities together. I didn’t have the greatest roommate. I don’t know if my disability was a factor in that.

BLOOM: Were there other students with disabilities on campus?

Max Setka: I noticed my first year that I was one of the few people in a wheelchair. But having gone to orientations at accessibility services, I found there were quite a few people who maybe didn’t have physical disability, but had invisible disabilities or learning issues. So I didn’t feel completely alone.

BLOOM: I guess Trent can’t advertise itself as being full accessible?

Max Setka: No. They’ve got some building that can’t be retrofitted because they’re so old. But they do advertise as the first university in Canada to have an MV1 van. It’s a small wheelchair accessible van you can book and it will come and take you from one building to the other.

BLOOM: What was accessibility like in residence?

Max Setka: I was in the one residence that has elevators. My room was slightly wider than average. One of the things that was an issue in the first week was pushing open the door and closing and locking it. They’re very heavy fire doors. So the school attached an automatic opener to the door and gave me a small key fob.

This year I’m off campus, and I started using Peterborough’s Handi-Van, which is like Wheel-Trans. Otherwise I have to take two public buses and they're not reliable.

BLOOM: I understand you’ve been quite involved in extra-curricular activities.

Max Setka: Last year when I was in residence I ran, and was elected, to the student government in my building. Our job was to get people involved and help them feel that they were a part of the college even if they’d moved out.

We met every other Sunday and had to do required office hours. I think personally for me it made me noticed, because I was always around, and people would say ‘Hey, you’re that guy, right?’ I became more than the kid in the wheelchair.

BLOOM: This year you’re reporting the university's hockey games.

Max Setka: Yeah. I’ve always been a great hockey fan and because I can’t skate with a disability, I always looked for different ways to be involved.

BLOOM: How often do they play?

Max Setka: Right now it’s Thursdays and Saturdays every week. I do the full recap, so I have to be at the game and watching every move so I can write it down. I take notes on my computer. The idea is that by the end of the game the recap is out so that if you didn’t see the game, you know what happened before the newspapers publish it in the morning. Anyone can go on the team’s website to read it.

BLOOM: Isn’t it hard to get everything down as the game is happening?

Max Setka: No. I’ve become really proficient with typing. I take my little laptop and type as the game’s going. Typing has really helped my hands to be able to do more.

BLOOM: Are you interested in sports journalism in the future?

Max Setka: Yes, this is exactly what I want to go into. I love anything related to hockey.

BLOOM: What advice would you offer a high school student with a disability who plans on going to university?

Max Setka: I’d say don’t let your disability define what you think you can do. If you want to do something, go for it. In my first two weeks in residence I was writing applications for student government, and putting up posters and campaigning.

The other thing is to keep good communications with your school’s office of disability or accessibility.

BLOOM: Have you faced any ignorant attitudes about disability at Trent?

Max Setka: I haven’t. University is a different place from high school. People admire that you’re there and you’re doing what you’re doing. In high school, you may have an assistant with you, and there’s ‘a special room’ for students with disabilities. In high school there’s the perception ‘He’s from the special room, he’s always got this person with him.’ Coming to university I’ve been able to find out, and be, the kind of person I want to be.

BLOOM: Do you feel you’ve changed a lot?

Max Setka: I think I've found myself. I’ve gone through rejections and acceptances when trying to do different things. For example, I applied to be an orientation week leader this past September, but I didn’t get accepted. But that didn’t stop me from trying out for other things, like applying for this position with the hockey team.

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Carrying friend in backpack, next stop China

By Louise Kinross

In 2016 we told you about Kevan Chandler's trip to Europe with friends who carried him in a modified backpack when places wouldn't accommodate his wheelchair. Kevan, who lives in Fort Wayne, Indiana, has spinal muscular atrophy and weighs about 65 lbs. Sitting in an adapted child carrier worn by his friends, Kevan and the group hopped over stiles in the British countryside, climbed up 600 rock steps to an Irish monastery, and checked out the underground cemetery in Paris. 

Since then, Kevan and his friends have released a film of their European travels and started a non-profit group to promote accessible travel. Kevan now has his sights set on a trip to China in 2019. We did this interview by e-mail.

BLOOM: Why did you decide on China as your next tour?

Kevan Chandler: Even while we were in Europe, the guys and I talked about visiting China. One of our guys has a niece and nephew who were adopted from China, and he'd gone with the family to get them. So we had that connection and perspective, plus we had interactions with numerous Chinese tourists while in France, which helped to prompt the conversation.

It's an old, magical, and exciting place to explore, and like anywhere in the world, it's also a place where we could maybe be an encouragement in regards to disabilities. Then, last year, a great door opened for us to connect with an organization called Show Hope that serves orphans with disabilities there, which really solidified the idea to go.

BLOOM: Will you be using the same backpack and also taking your wheelchair?

Kevan Chandler: We have a newly developed backpack, along the same lines as the original, but more professionally done. We'll be using that, and like our last trip, we won’ be taking my wheelchair.

BLOOM: Are you travelling with the same friends who carried you through Europe?

Kevan Chandler: We will have the same film crew, and two of the four carriers. The other two guys just had other stuff going on. So, we've added two other carriers, who are friends of mine from Fort Wayne. We will also have a translator with us and a project manager, who will keep us on track.

BLOOM: You plan to visit a series of care centres for children with health issues and disabilities supported by Show Hope. Why?

Kevan Chandler: Yeah, we are really excited for the opportunity! I'm reminded of what Jesus said about kids, and I can't help but see the Kingdom of God in these little ones and the folks working with them. So much need, so much vulnerability, and so much love to redeem it all. Who wouldn't want to be part of that? Our hope is to be encouragers of the good work that's already being done among the kids and care staff there. We can't wait to spend time with them, play, share our story, hear their stories, and also take some backpacks like mine for the staff to use with the kids.

BLOOM: Do you know what percentage of these children are adopted? 

Kevan Chandler: I'm not really qualified to answer this. And at the same time, we as a team are more focused on the current circumstances of these kids and meeting them in that, with the bit we can do to help. It's important to be faithful with what's in front of you to do, right?

BLOOM: Where will you be staying on the trip? 

Kevan Chandler: We plan to do some exploring around both countrysides and cities, but the Care Centers of Show Hope will be kind of like our hubs that we come back to and spend most of our time.

BLOOM: Are you anticipating any challenges in China that you didn’t experience in Europe?

Kevan Chandler: Well, there is the language barrier! Haha! There is that, but also a pretty extreme difference in culture that we will need to navigate. These are all things we dealt with in Europe, especially France and Wales, but China just takes it all to the next level, so we will have a translator traveling with us to be of assistance.

BLOOM: Are there particular places or historic sites you’re eager to see?

Kevan Chandler: Yeah, we are excited to visit the Shaolin Temple and the Great Wall, for starters!

BLOOM: I think you raised about $35,000 US to cover the cost of your Europe trip. How many weeks will you be in China and what will the total cost be? Is there a link to your funding page?

Kevan Chandler: Yes, and we were pleased to end up on a similar budget for this trip to China. With travel included, we will be gone about three weeks, like with Europe. This trip is budgeted at $40,000US, which makes sense because it's farther and our team is a bit larger (nine of us vs. the seven that went to Europe). We just launched our GoFundMe page this week, and since we're now a 501(c)3, any donations are tax deductible.

BLOOM: I notice you are taking a translator. Do any of you speak Chinese?

Kevan Chandler: Nope. That's why we have the translator, a really cool friend of ours from China who lives nowadays in British Columbia.

BLOOM: What messages about disability do you hope people take when they see you on your trips?

Kevan Chandler: I think it's bigger than just disability. We are all broken in some way or another, and we're all looking for some relief. So, when folks see a guy carrying another guy whose brokenness is so clear, I hope they see themselves.

What I love most when I travel is when walls come down and people just start sharing honestly about their own lives and experiences. It's a stark expression of what we all feel and desire inside, so we act as a kind of ice-breaker for people to look inward and dig deep. My hope is that that winds them up at a place of peace, whether they are encouraged or challenged, because both—if received—end up at the same place.

BLOOM: You said you’ve started a non-profit called We Carry Kevan since your Europe trip. Do you sell backpacks like the one you use? What does the non-profit do?

Kevan Chandler: We did start a nonprofit! We are working with Deuter to develop a backpack like mine for mass-production. Our hope is to have them available in the Spring of 2019. In the meantime, we are customizing a few backpacks ourselves here and there, and we are also taking time to tour, speak, and spend time with people.

Our mission statement says it best: ‘Believing in the inherent value of all people, We Carry Kevan mobilizes individuals with disabilities by redefining accessibility as a cooperative effort.’ That job of redefining involves a lot of examples lived out and a lot of conversations had, and it's been amazing to see those opportunities come with the nonprofit these past few years.

BLOOM: Do you know of any other people with disabilities who were inspired by your Europe trip to try to do something similar? I’m imagining that the backpack option only works for people who are very light?

Kevan Chandler: It's been wonderful these past few years to see, hear from, and meet folks, both disabled and able-bodied, who are inspired by our adventure. And the backpack was just our way of doing things. It will work for some people and not for others.

But the the backpack isn't the be-all and end-all. It's a tool to exercise the deeper idea, which is that accessibility comes with courage and creativity and people working together. So it's been awesome to see people getting that and acting on it in their own way. It's been a joy to come alongside them in their adventures.

BLOOM: Are you still working as a sound editor producing podcasts?

Kevan Chandler: No, actually! Just recently, I stepped out of that career to give We Carry Kevan my full attention.

BLOOM: What are your thoughts on the new treatment Spinraza for people with spinal muscular atrophy? Is this something you are interested in pursuing?

Kevan Chandler: I'm excited to see its positive effects on my sister as she participates, and my hope is that it does provide relief and strength for folks with SMA who go that route. I am personally not involved at this time.

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Young carers and other pieces of disability news

Photo by CBC News

By Louise Kinross

Youth who help care for a disabled or ill brother or sister were in the spotlight this week at the Young Carers Forum in Toronto, organized by The Change Foundation, an Ontario health think tank.

Alyssa Van Wynen, 21, centre above, spoke to CBC about her experience supporting her older sister Tiffany, left, who suffered a traumatic brain injury in a car accident. “With my sister, she lost out on a lot of stuff, so there’s that huge guilt factor, too,” she says in this eye-opening interview. “Because I am younger than her, I’m getting all these opportunities and stuff that she didn’t have the chance to experience.”

The Change Foundation says as many as one-third of people between the ages of 15 to 24 in Ontario act as caregivers to a family member. You can watch some of their stories here.

Two Toronto programs for siblings of children with disabilities are the Young Carers Program through Toronto Hospice, and a Sibling Support Program at Extend-A-Family.

In other news, check out this interview with Microsoft’s Chief Accessibility Officer Jenny Lay-Flurrie, who is deaf, on AXSChat, where Twitter users discuss accessibility in business.

Microsoft has its own profile on Jenny.

The London, U.K. travel company Accomable, for people who need accessibility, has been bought by Air BnB. That should mean more and better accessibility features in Air BnB listings.

Two new books caught my eye today. The first is Academic Ableism: Disability and Higher Education. That’s it, I thought! Academic ableism. That’s the concept I’ve been trying to articulate. How the culture of academia excludes people with disabilities, especially intellectual disabilities.

Here’s a short passage: “Disability has always been construed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of 'lower education' to justify its work and to ground its exceptionalism, and the physical gates and steps that we find on campuses trace a long history of exclusion.”

The book looks at how universities have helped define, study and devalue disability, but never recognized disability as a source of knowledge.

University of Michigan Press describes it thus: “The ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual, mental, or physical weakness, even as we gesture toward the value of diversity and innovation.” Author Jay Dolmage is associate professor of English at the University of Waterloo.

The book come out Dec. 27.

The other book that intrigued me is A Feminist Ethnography of Secure Wards for Women with Learning Disabilities: Locked Away.

Author Rebecca Fish writes: “This book is an ethnography of locked wards for women with learning disabilities. It represents just a small part of my life the year of my fieldwork...These women had been removed, sometimes a great distance, from their families and friends, and compelled to lead a restricted life under surveillance and control.” Rebecca is a researcher with the Centre for Disability Research at the University of Lancaster in the U.K.

Finally, CanChild is looking for feedback on a new knowledge hub based on its F-words in childhood disability. Check it out and click on the top right to do an evaluation.

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It's the little things, like shoes

By Louise Kinross

A year ago I bought my son two pairs of the same New Balance training shoe—one in white and one in black. A colleague had recommended it as one that works well for people who need a lift added to one shoe, because of a difference in the length of their legs.

There’s nothing wrong with this particular shoe, per se. But it’s boring.

Before my son went off to camp this summer, I told myself I would find a new pair of shoes for him, a pair that not only fit his unique feet comfortably, but which were also high on the cool factor.

I knew this would be a challenge. I did not imagine that two months later I would be shoeless, and sitting in a work meeting looking dejected and asking: “What was that journey called that knights were sent on, you know, like in that poem Sir Gawain and the Green Knight?”

“Quest?” my colleague offered.

“Yes! Quest! That’s it!”

Let me explain. My son’s feet do not fit standard sizes. “Would it be okay if I wrote about how hard it is to find a pair of shoes that fit you?” I asked him this morning. He nodded in the affirmative.

My son has an unusually high instep, which means that most shoes are not roomy enough to do up over his instep.

In addition, he wears in-the-shoe orthotics, so his shoes need extra width.

The sole must be wide and relatively flat, so that a lift can be put on the left one (forget all those shoes with big bumpy things on the bottom).

And he needs lots of ankle support—he can’t wear those weightless Nike Free running shoes that one of my daughters has in about six different colours.

The ideal pair is laceless and easy to put on. And it must come in a boys size 2.

I began by visiting a children’s shoe store in Toronto—nowhere near my home—where I purchased a pair of Asics running shoes that I thought might work. I didn’t bring my son because it isn’t easy for him to walk, and I wanted this search to be painless for him.

I got them home. I took out the insole and managed to shove one of the orthotics in—just barely.

“Can you put this one in?” I asked my husband.

He began to manhandle the shoe.

“But don’t WRECK the shoe, I may have to bring it back!”

He got the orthotic in. But it was pushing out against the sides of the shoe. Would this cause the shoes to tear?

I asked my son to try them on. It sounds easy, but it wasn’t. We both had to work to get his foot in there—me holding the back of the shoe down while he tried to step in, at the same time as standing up, to add pressure. It was obvious there wasn’t enough room for his instep.

I wasn’t cast down. I drove right back over to the other side of town, in rush-hour traffic, and asked for the larger size. When I brought that pair home, they didn’t fit either.

That’s when I decided to do this shopping thing from the comfort of my own home. I went straight to Nike.com. High-tops, I thought, would probably be a safer bet, for the added support.

I found these Nike Air Force 1. I sent the link to the person who makes our lifts and he said one could be put on them.

I ordered.

They arrived. They looked great. But when my son tried to put them on it was like trying to force a square peg into a round hole. We did finally get the shoe on and done up. But his instep bulged out of the top so the velcro strap hardly reached over to the other side to close them. His feet were falling out of the shoes.

I put the Nikes back in their box and dumped them in the back of my car, where I still had the larger pair of Asics rattling around in a box.

Nikes is a dream to order from, by the way, because they cover the cost of returning items (how do they do that?). I put the address label with the bar code they provided on top of the original label and handed the box over at UPS. A few days later the money was credited to my account.

While googling “best children’s shoes for orthotics” I came across recommendations for Plae shoes, based in San Francisco. On their Facebook page they had photos of kids wearing the shoes with orthotics. Customers said they were wider than usual, didn’t have an insole that had to be pulled out before placing orthotics, and had velcro tabs.

I thought this pair might work.

I put them in my cart and started to type in my address. I scrolled up and down under “state/province” but they only listed states. What? They don’t ship to Canada? The nerve! How provincial could this company be?

I “chatted” online with a service rep who told me that Nordstrom in Canada carries some of their products.

I called Nordstrom downtown and described the shoe. The salesperson put me on hold. Ten minutes later he picked up the phone again. “We don’t have that style,” he said, “but we do have a Plae shoe in…” and then he proceeded to describe this other shoe—blah blah blah—the elaborate details of which I can’t recall. “Hold them,” I said, mentally changing my plans for that night.

I messaged my brother, who lives in Boston, to ask him if I could have the pair I liked on the website shipped to his house. “Sure,” he wrote back. “And I’ll even pay to ship them to you.”

Then I drove to the Eaton’s Centre to see what style of Plae shoe they had in stock.

Major disappointment. Before I went to the cash to ask for the shoe I’d put on hold, I perused those on display. There was another Plae one. They were sneakers, not the high-tops I was looking for. I picked them up but they just kind of flopped in my hand. No marks for support.

An overly helpful salesperson swarmed in on me.

“Are you looking for something specific?”

“I called and had a pair of Plae shoes put aside for me. But I’d also like to look at the other shoes as well.”

“Of course,” she said, “I’ll go grab the Plae ones you called about.”

I found a pair of Adidas high tops that I thought might do the trick. I picked them up and sat looking at them, opening them and closing them and trying to eyeball whether they were likely to fit my son’s feet. The more I stared at them, the more uncertain I grew.

The salesperson was now by my side, with the pair of Plae shoes I’d put on hold. “I definitely don’t want those,” I said, “but I’m not sure about these,” I said, gesturing to the Adidas.

“They’re great shoes,” she said. “We’ve had no problems with them.”

“I’m just not sure if they’ll fit my son’s instep.”

“How old is your son?” she asked.

Oh brother, I thought. If I tell this lady how old my son is, she isn’t going to understand why his feet are so small. And then I’m going to have to tell her a long story.

Instead, I opted for: “He wears a size 2.”

“Oh, well that’s easy,” she said. “Why not just buy him a size 3? Then you know they’ll fit and he’ll wear them for a while.”

Oh dear. I know this is what it’s like to buy shoes for people who fit standard sizes. But my son DOES NOT fit standard sizes.

“You can return anything for a refund for up to 30 days,” she said, smiling and cocking her head to the side hopefully.

I bought them.

When I entered the house, my husband gave me a puzzled look. He’d seen shoe boxes coming in and going out of our abode for the last few days.

“What did you buy?”

“A pair of shoes.”

“Another pair?”

“The other ones didn’t fit!”

I called my son up to try them. “What do you think?” I said. He smiled, and I could tell they met the cool factor.

Then we tried to put one on.

Remember that first pair of Nike Air Force high tops we got?

This shoe was made the same way. For someone with ZERO in-step.

You can imagine the salesperson’s surprise when I returned with them the next day and became the first disappointed customer. "They didn't fit," I said simply.

I was frustrated, but I wasn’t giving up. I started surfing the web looking for other types of high-top shoes. I came across this Ecco site and thought these shoes looked cool, well made and sturdy. And, they had a velcro closure. I chatted with a service rep who told me they came without insoles, which is handy for orthotics.

I ordered them.

The Ecco shoes arrived. They were gorgeous. Beautifully made. I wish I could afford a pair myself. But they didn’t fit.

I posted a message on the Three To Be Facebook group, to ask other parents for shoes that work well with orthotics.

One mom suggested DC shoes, because they’re wider than usual. I went to dcshoes.com. I thought these might work. But couldn’t I get these shoes somewhere locally? I went to a SportChek, but it turned out to be one that hardly stocks any kids’ shoes. I went to “Find a store” on the DC shoes website and typed in my postal code. It pulled up a store called CORE on Queen St. E. It was 8 o’clock at night, but I called.

“I’m looking for a Plae high-top shoe in a boys size 2,” I said.

“This is a sports marketing agency,” the woman said, while music blared in the background.

“Well, your company is listed on the DC shoes website as a distributor. Did you used to be a shoe store?”

This woman wasn’t interested in prior incarnations of the building.

So I ordered the DC pair online.

They were my last shot, because my son was leaving for camp and the window for having a lift put on them was closing.

DC Shoes sent me a tracking number, and everything was going according to plan. Then I got an e-mail alert to say the delivery date was being delayed four business days. It would take that time, the note said, to bring the shoes from the U.S. through customs at the Canadian border. What? Four days!? Was someone walking them over? I didn’t have four days.

I messaged the company to complain that they weren’t honouring their original delivery date. They were not moved, on compassionate grounds, to find a solution.

The DC Shoes arrived the day before my son went to camp. They didn’t fit. I had to pay the courier to send that pair back.

I couldn’t believe that I’d been on this mission for over a month, and had nothing to show for it.

To rub salt in the wound, Nike had already designed an "accessible" shoe. 

The LeBron Soldier 10 FlyEase was developed for a student with cerebral palsy who needed a shoe that fastened without laces. It has an ankle zipper that makes it easy to put on and do up.

In our April issue of BLOOM, we gave a shout out to Nike for the latest version of this FlyEase, noting that LeBron James had handed out pairs to kids at the Cleveland Clinic Children’s Hospital for Rehabilitation.

At the time, I thought they looked perfect for my son.

But when I sent a picture to the orthotist, he said the sole was too narrow in the middle to work with a lift.

Huh?

You mean Nike’s accessible shoe isn’t accessible for my son?

I’d watched the videos about how this shoe was designed. I’d posted all over social media, letting all my disability friends know about it.

If Nike’s accessible shoe didn’t fit my son’s foot, what would?

I went back to Nike.com and noticed they offer customers the ability to customize their shoes in a million ways (slight exaggeration). In boys’ shoes, you’re given 11 options for things like tongue, swoosh, midsole treatment and laces. Within each of those categories, there are dozens of colour options to choose from. You can even get polka dots for goodness sake. You can choose whether to have the Nike name on the back of the shoe. Or to leave it blank. Frankly, I got tired of clicking on all of the possibilities.

Why, I thought, isn’t it possible to order a lift in a standard size from the manufacturer, instead of having to take your shoes to an orthotist and pay that person, in addition to what you pay for the shoe? And if the lift came from the manufacturer, it could be designed to match perfectly, not stand out, which is how some of the lifts end up looking.

How hard could it be to design a lift in a couple of common sizes that can be put on and taken off a shoe? It didn’t sound like rocket science to me.

I remembered that the Nike guy who designed the FlyEase shoe with the zipper was called Tobie (unusual name). I googled “Tobie Nike e-mail” but I couldn’t find his e-mail. I did find his last name: Hatfield.

So I called the corporate offices.

I asked for his e-mail.

“We aren’t able to give out e-mails,” the woman said. “But I can give you his number.”

Bingo, I thought.

I called and left a detailed message. I explained that I’d shared the FlyEase with our BLOOM readers in 181 countries. Then I said I’d looked at all the ways people can customize their Nike shoes, and I was frustrated that there wasn’t an option to purchase a lift, which is something my son needs. Wasn’t it possible to make standard, removable lifts that could benefit people with disabilities?

I was excited. Maybe Tobie would be interested in this idea.

I didn’t hear back from Tobie.

I did get a call from Molly (these Nike folks have hip names, huh?), who apparently works with Tobie.

Molly said Tobie got my message, but was unable to personally respond. She said they had floated the idea of customizable lifts in the past, and it’s something they hope to do in the future. But there were no immediate plans.

Which left me back at ground zero.

AAAAAHHHH.

I went back to the website.

Maybe I would purchase a pair of the FlyEase ANYWAY, just to get them in my hands. Maybe I could find someone who could work a miracle by affixing a lift onto them.

Then I realized the shoe didn't come in a size 2. The sizes you could click on started with a 3.5.

Really? Why?

Why would a kid wearing a 3.5 be more likely to want this shoe than a kid that wore a size 2? A kid who needs the access due to disability in a 3.5 would also need the access in a size 2. Had Nike done some kind of sophisticated buying pattern analysis on this?

I typed in my e-mail and a question: Why isn't it possible to purchase this product in a size 2 or 3?, I asked.

Nike e-mailed to thank me for my question. I can’t find their response now. They said they would share my feedback. But when I checked back days later, you could still only buy the product in size 3.5 and up. Ditto when I looked today.

I do not like giving up. I do not give up easily. Anyone who knows anything about disability, knows that a parent will go to the ends of the earth to get something for their disabled child, to have them included, especially if that something is freely available to other children.

And that's how I ended up thinking about the fact that I'd had to write an essay in university about Sir Gaiwan and the Green Knight. I felt like one of King Arthur's knights, who kept coming up against impossible tests. Heck, I'd gotten an 85 in a course on Chaucer's Canterbury Tales. But in all of the legends I could remember, there was some kind of resolution, some happily-ever after, even if it wasn't perfect.

Why wouldn’t a company as big and successful as Nike design a few accessible shoes with different features, and with the ability to customize things like a lift? I know it’s not a big market. But they've received GREAT press for the FlyEase. That media is worth its weight in gold. Access options allow people to WEAR their shoes, period. Not just decorate them. Who can't get behind that?

My trial is not over. Yet.

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Asha 'reshaped the way I look at the world'

By Louise Kinross

I heard this amazing interview with Ron Buliung, a professor in transportation geography at the University of Toronto Mississauga. He’s collecting data on a research project that looks at how children who use wheelchairs and walkers—and their parents—view accessibility at home and on the child’s trip to school each day. The project grew out of Ron's family's experience trying to make their front yard accessible for daughter Asha, 5, who drives an electric wheelchair. BLOOM talked with Ron about how his personal and professional life came together after his daughter was born with spinal muscular atrophy (SMA) type 2, a degenerative condition that affects the muscles.

BLOOM: Tell us a bit about Asha.

Ron Buliung: There’s a difference between how she, and we, view how she’s affected, and the clinical description that emphasizes what she can’t do. Asha’s unable to walk and never crawled, but she can sit independently. She drives herself around in a 300 lb., $26,000 electric wheelchair.

BLOOM: Oh my goodness. Have you heard about the researcher in the U.S. who adapts ride-on toys so that kids with disabilities can get moving at an earlier age? He has issues with the cost and lack of innovation in the industry.

Ron Buliung: No, I haven’t. But I agree that there’s no innovation. Why does Asha’s wheelchair have to be 300 pounds when a formula 1 race car body can be made from carbon fibre? And a lot of the technology design is medicalized. For example, Asha needs a hospital bed. But there’s no reason it has to look like a hospital bed. Many things that we need are drab and bland and dehumanized from a design perspective.

Asha’s needs are like many kids with her type of SMA—they centre around her respiratory health and mobility. She uses a BiPAP every night as a respiratory therapy to help her deal with mild apnea and to help with lung development. She has a hard time expelling secretions and had a lot of pneumonias when she was younger. In terms of the interventions she requires and the teams involved, it can mean a lot of effort and stress and sleep deprivation for us.

BLOOM: What’s she like as a kid?

Ron Buliung: She’s very, very smart. I’m kind of a bit of an introvert and she’s an extrovert. Just the other day we took our dog to the vet and Asha struck up a conversation with a stranger about cats that I wouldn’t have [initiated]. She’s always reaching out with her social skills.

BLOOM: What does she like?

Ron Buliung: She belongs to Young Voices Toronto which is a choir. She loves singing, music, art. She takes an art class on the weekend where she’s doing all kinds of painting and mixed media.

BLOOM: Does she have fine-motor issues?

Ron Buliung: SMA is degenerative, so people gradually lose some of their abilities. But right now she’s writing letters and doing what she needs to do. She’s in senior kindergarten in an elementary school that can accommodate children with physical disabilities.

What’s annoying is that her school is three-and-a-half kilometres away and we live 500 metres from the public school her sister goes to, which is totally inaccessible. It would be nice if they could be at the same school. She likes school and does well at it.

BLOOM: Is her school accessible?

Ron Buliung: They’re working toward creating more accessible spaces. Asha talks about being excluded by environmental barriers. Recently, she said there’s a concrete curb that separates part of the playground from the rest of the tarmac and she can’t get over it in her wheelchair. She knows that going on the [play] equipment won’t work for her, but she wants to be closer to the other kids. She gets pleasure out of watching kids do things. She was sad about that curb. We have to go and see what’s happening and we haven’t had time to do that yet.

She has a full-time educational assistant that she adores. But the process of getting that one-on-one is challenging. To justify the full-time EA we were told you almost need to demonstrate the need for two, in order to get one. We all know the school system is stretched extremely thin. When she first went to junior kindergarten she had a part-time EA and a bit of nursing support. But that also ended. Another weird thing was trying to figure out who can perform labour inside and outside the school. There were a lot of weird rules that can come down to the politics of labour getting in the way of the care of children.

BLOOM: What’s been the most challenging part of raising Asha?

Ron Buliung: The biggest challenge is having the help in place so we can function. For example, Asha needs to be turned over during the night, and she needs her BiPAP monitored. We have a constellation of services to help us so that we can sleep. But it takes an enormous amount of work to make that constellation function. And because there are many individuals operating within it, people drop the ball and we’re left picking up the pieces and rebuilding parts of the system. When a nurse doesn’t show up, or there isn’t a good relationship between Asha and that person, it can be very challenging.

BLOOM: You said you and your wife both work. How do you function if a night nurse cancels?

Ron Buliung: There’s a reason why they use sleep deprivation as a form of torture. Sleep is a common theme in our conversations. Even last night Asha woke up and was very upset at 4 a.m. and I went and helped the nurse with repositioning her. Within the last few weeks, two of our key nurses were allowed to go on holiday at the same time. It blows my mind, when someone’s entire job is scheduling, how we end up doing the worrying and sorting that out behind the scenes.

BLOOM: There have been a number of stories on Global about parents’ inability to get reliable night nursing for their kids.

Ron Buliung: The work of childhood disability represents a part-time job within the household. There isn’t a day that goes by when I’m not having an e-mail conversation with our nursing providers.

I’d say the hardest challenge changes over time. When we first got Asha’s diagnosis we were dealing with the shock and quite frankly, the disappointment and sadness, and the losses accumulate for everybody. No matter how you want to conceptualize exceptionalities, there are, because of the environment we live in and the systems we use and participate in, real limits. There are amazing possibilities as well, but there are also things that are very, very hard to do.

When we first got the diagnosis, my wife Tara and I would wake up in the morning and for 30 seconds we’d forget. And then we’d remember and start crying. And it wasn’t just crying—it was the worst, gut-wrenching, agonizing bawling. That went on for six months. We were given a relatively negative prognosis that Asha might not make it to kindergarten. She’s already exceeded those expectations. I believe she’s with us today and healthy and happy because we worked our asses off, quite frankly, to make sure that things are in place for her to have a good quality of life and for her health to be good. We’re on top of it, but it always feels like we’re just barely on top of it.

BLOOM: How did you move forward from those early days stuck in grief?

Ron Buliung: Time. And also, eventually you make a decision that you’re going to step up and do this and handle it and figure out what to do. I can remember coming to Holland Bloorview to get a cough-assist machine, and I thought ‘I don’t want a cough-assist machine, I don’t want any of this in my life.’

Then time moves on and you start working on health prevention and intervention, and Asha is developing and becoming a person, and you’re putting your family together and fumbling through, and it happens. You have to decide that you’re going to commit to it. That’s an important piece. You have to consciously say ‘I’m onboard to do this.’ And some people don’t. The rates of marriage failure for families who have a child with a disability are higher. But you can get support for that also.

Over time we’re getting over our grief, but you don’t ever ‘get over it.’ It is always there. We talk about anticipatory grieving and loss, particularly with something degenerative that can become acutely critical very quickly. There’s a chronic stress in your life around that.

BLOOM: What do you do to help cope with that stress?

Ron Buliung: I do a lot of biking. I’m an obsessed cyclist.

BLOOM: Do you bike to work?

Ron Buliung: Yes, I bike to Mississauga which is 30 kilometres. That takes about an hour.

BLOOM: So you’re biking two hours a day?

Ron Buliung: Yes, I do a couple of hours every day. But it’s not enough. You have to work on your mental health. Of course they’re not disconnected. You see in the medical literature that people who engage in regular physical activity are less likely to develop depression and anxiety.

BLOOM: Is there anything you’d recommend for parent mental health?

Ron Buliung: I think there’s a stigma attached to reaching out around mental health issues. I think parents should take everything they can get, whether it’s a social worker at Holland Bloorview or using their employee assistance program at work, if they’re lucky enough to have one.

In terms of challenges, accessibility is a massive challenge. From the moment of Asha’s diagnosis, we walked out of the hospital and looked around and everything looked different to me. I saw barriers everywhere. Later, just getting Asha to school involved a massive amount of work and stress to transform the front of our property so she could get from the house in her wheelchair to the school bus. The city did not make it easy. There was no box to tick to say that you needed to transform your front yard into a parking pad because there’s a child with a disability. It took two years!

In one of our initial meetings with our local councilor, she asked ‘Couldn’t you just carry her?’ My answer was: ‘She’s not a bag of groceries.’ And that totally ignored the fact that she’s going to grow and maybe she’d like to have some independence.

BLOOM: If you could change one thing in the health-care system, what would it be?

Ron Buliung: Not being able to move things forward fast enough is a chronic frustration with our family and others. Right now there’s a clinical trial for a drug therapy that’s been shown to, in some cases, get children with SMA type 1 walking. But it’s incredibly expensive—$750,000 for the first year. Health Canada is reviewing the drug in an expedited review process, but I believe they’re only looking at it for children with type 1 at the moment. Where does that leave us?

While we’re waiting for a cure, having more support available.

BLOOM: Like with night nursing?

Ron Buliung: Yes. More reliable, regular support that is carried out with a higher degree of professionalism. When I talk about professionalism, I think a lot of families are conditioned to expect not very much. A few times we ended up keeping people around too long because we were afraid that someone was better than no one at all.

BLOOM: What’s the research you’re doing now related to accessibility?

Ron Buliung: We have 12 to 15 families and we’re doing something called photovoice ethnography of the trip to school. Children and their parents are interviewed separately, but they also take photos from their home to the lot of the child’s school. The photos are used as a cue in semi-structured interviews where parents and kids share the good, the bad and the ugly of access to education.

One of the things we want to do is indicate every institution that is involved in an aspect of the school trip. It could be an agency, the bus operator, the bus driver, the school board, the province of Ontario, the City of Toronto. We want to look at how institutions either enable or produce or reinforce disability. We’re also looking inside the home at things kids and parents see that could make things easier. They have different points of view.

BLOOM: You mentioned in your View to the U interview that before you incorporated disability issues in your research, your work was a protected space, distinct from the challenges at home.

Ron Buliung: I think my initial concern was that it might be a bit overwhelming, but I don’t have that concern anymore. I feel I have this position of privilege and maybe I’m in this position for a reason. I’d like to use it to do work that’s meaningful for me and helpful to others. I teach a course in transportation geography and I’m able to bring something to those courses in a way I hadn’t before.

I’m also plugged in to the regional community of planners and government planning for active and sustainable school transportation. I wrote a series of studies on childhood disability and transport and they had a conversation about how disability can be plugged into what we define as active school transportation. They were thinking about walking and cycling. They weren’t thinking about kids wheeling or other ways of getting there. I can engage policy makers around this stuff, so our kids don’t get excluded from site planning for new schools.

BLOOM: You said that you used to teach a course that included some content on accessibility before Asha was born.

Ron Buliung: I did. But I couldn’t relate to the content in the way I do now. I’ve always been interested in social difference and mobility, but I hadn’t plugged disability into that interest, which was a shortcoming of my own. I was naïve and unable to meaningfully connect with the subject.

Asha is one of my greatest teachers. She reshaped the way I look at the world and that’s a huge privilege.

In my graduate research group, two of my PhD students are working on disability and accessibility. They wouldn’t be doing that without Asha. Asha is the motivation and inspiration for all of this work.

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