Tuesday, March 13, 2018

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.

Thursday, March 8, 2018

'Being a black male is...a safety issue over and above autism'

By Louise Kinross

Many of you know Amy Ma, who is chair of the family advisory council at Montreal Children’s Hospital.

Recently, Amy told me she'd heard a parent speak at a Black History Month event about her fears for her sons, who are black and have autism, and the racism and ableism they will face.

That parent is Sazini Nzula, and she lives in Montreal. Sazini has a PhD in medical microbiology and worked for years as a scientist. Sazini has two sons—Ethan, 11, and Jayden, 7. After Ethan was diagnosed with autism, Sazini trained in Qigong Sensory Treatment, a type of evidence-based massage that helps reduce sensory issues in children with autism. “At the time, we had to wait two years to get an autism diagnosis in Montreal, and another two years to get government help,” Sazini says. “This was a method that parents could use by themselves while they waited.” While teaching parents, Sazini was inundated with questions about other aspects of parenting children with autism. She now provides personal coaching to parents. Her book Beautiful Inside and Out: What You Ought to Know about Autism was just released. We spoke about Sazini's experiences with stigma related to race and disability.

BLOOM: Can you describe how Ethan and Jayden are affected by autism?

Sazini Nzula:
Ethan still has language delays and only really began speaking when he was about nine. Before that he could say words, but now he actually talks. He has huge sensory challenges, which are better than before, and trouble with self-regulation. He has issues with behaviour and last year at school was horrible for him. This year is going well.

Jayden has challenges focusing and staying on task. He sometimes needs to wear noise-reducing headphones. Jayden also struggles with social interaction.

BLOOM: What has your experience been with stigma related to disability and race?

Sazini Nzula:
There’s stigma from the black community, and then there’s stigma in general.

BLOOM: How are they different?

Sazini Nzula: In the black community it’s about having an invisible disability to do with the mind. I’m African, and it doesn’t matter how educated people are, there's still a tie to traditional African beliefs about witchcraft, because it’s scary and they can’t see it, so they don’t understand it. When it’s a physical disability that you can see, they can process that better. But if the mind is different in some way, it must be because of an evil omen.

BLOOM: I’m recalling now a story we did with a Nigerian mother who explained that disability is viewed as a taboo there, as something evil that brings shame on a family and is caused by the parents. Do you find that even when Africans have been Westernized, that some of these traditional beliefs are still deeply embedded?

Sazini Nzula:
Absolutely. When Ethan was two I met a man who was educated in the medical field, and he told me he hadn’t told his brother that his child had autism, and the child was nine. I did some research and learned that in Nigeria and Kenya, surveys of doctors, special education teachers and social workers found these traditional beliefs about disability are still there. The stigma of disability is also a huge problem in Japan and South Korea.

BLOOM: I remember a parent here who explained that when her child was born with disability, for the first year, they were unable to tell anyone in her husband’s family, because of how disability was perceived in his community. So they had to make intricate excuses to prevent that side of the family from meeting the baby in person.

Sazini Nzula:
 In the part of Montreal that I live in, there aren’t that many black people. I remember meeting a Haitian social worker at a cultural event, and she told me that families were happy to speak with her about their children with autism, but they didn’t want other families in the community to know. So they wouldn’t come to events for families.

BLOOM: How do you deal with the stigma of disability in the black community?

Sazini Nzula:
I chose not to let it affect me. I chose to tell everyone that my children have autism. I don’t have to hide it and there’s nothing to be ashamed of, in the same way that I wouldn’t be ashamed if my sons had diabetes.

What impacts me is stigma in the general community. For example, one time we were in a supermarket and my older son got separated from us. He can’t speak French and we live in a francophone province, so he pushed past someone to come and join me, and this woman went on and on about how he’d been badly raised, and how in this country we teach our kids manners. But my kids were born here. Had my son been a white kid, she probably would have said something similar but not ‘in this country.’

As my son gets older and taller, I started to be afraid of being outside. When I was at the Black History Month event, I talked about how we came home one night at 5:30, and it was getting dark. My son was having a hard time and he was running down our street. He ran past the two neighbours I know very well, who understand his issues.

My first thought was what if someone calls the police, and says ‘there’s this black kid in the dark running down the street.’ We have a police station within walking distance. I thought if the police got to him before me, there was a chance that things would not have gone well. Being a black male is definitely a safety issue over and above having autism.

BLOOM: We’ve certainly seen stories of autistic youth or adults who are assumed by police to be doing something illegal, because they won’t comply with what the police ask, or they have certain behaviours, or they aren’t able to explain their situation.

Sazini Nzula:
That happens everywhere, whatever the race of the person. What I see as an extra factor is my black child who looks out of place in our neighbourhood. He might not be able to comply with the police commands, or, because the police speak in French, he might not understand. Even if he is spoken to in English, he might not be able to process it. Now that’s my big fear.

BLOOM: I understand you have tried to develop a relationship with the police?

Sazini Nzula:
I’ve been taking my kids to the local police station since my son was four. My idea was to get my kids used to seeing the police as their friends, and to develop a relationship with the community relations officer, so that if anything happened in our neighbourhood, they would be the first to respond.

I called and explained I had a kid with autism and was wondering if I could drop by. I said I was teaching my son that police are safe people they can approach. Our experiences were good. What I’d love to do in future is go and do an actual presentation.

BLOOM: What advice would you give other parents raising black children with autism?

Sazini Nzula:
My biggest fear is involvement with the law. We have to develop an understanding with law enforcement to make sure our kids don’t get hurt and make sure our kids are understood.

I have a nephew who is able-bodied and well functioning, and I’ve seen situations where he’s not treated well by police, and he’s done nothing. When I put the disability on top of being a tall, strapping, black male, we really have to be aware and be vigilant and empower our kids.

BLOOM: Do you talk to your sons about racism?

Sazini Nzula:
With my older son, he’s not at a level of social awareness where he would notice if it happened. So for now I tell him if he feels he’s in trouble or not safe, to call mommy or to call the police. We’ve talked about calling 911 in an emergency, and my kids are good with numbers and use their cell phones.

In Grade 1, a student told my younger son ‘brown people are dirty and stupid.’ So I did talk to him about race. In his school, which is a public school, there aren’t that many people who aren’t white.

BLOOM: I loved one of your blogs where you talked about having a jar that you regularly drop memories of awesome things your kids do into. Can you explain?

Sazini Nzula:
It’s a way to focus on the good things. Last year, when I think of my older son’s school year, I remember all of the calls from the psychologist, all of the meetings, and all of the really negative stuff. Plenty of awesome things happened, but I can’t tell you specifically what happened at school.

I thought this year I’m going to make sure I remember. Yesterday, we went to see the movie Peter Rabbit. For us, that was the first time we saw a movie that’s not adapted. It was for anyone, and there were lots of kids, and the sound wasn’t reduced. My son sat through, even though he forgot his headphones. That was awesome for us.

So I write the date on a sticky paper and write something that stands out, and drop it in the jar. I think it will make me even more aware of when awesome things happen. I’m capturing them, and I appreciate them more.

My plan is that if we go through a really challenging time during the year, I will pull them out to read and remember all of their victories. And certainly at the end of the year, we will read them to remember what happened.

BLOOM: You just released a book. What's it about?

Sazini Nzula:
It’s to acknowledge that it’s difficult, but that as parents we need to embrace the uniqueness that our kids bring to the table. One of the subtitles is: ‘How to embrace the unique way your child is flourishing.’ So the message is that you need to go with your child, whoever they are, and still live your dream.

BLOOM: Is the book only relevant to parents of children with autism?

Sazini Nzula:
No, it’s useful for parents of children with other disabilities. There’s a practical chapter, for example, on preparing your kids for adult life, and preparing yourself, the parent, with financial and estate planning.

BLOOM: Do you talk about race in the book?

Sazini Nzula:
I do talk about the stigma of autism or disability, but not in the way of race. I have a chapter called ‘Life in An Autism-Unaware World.’ I had originally written about race, but the editors suggested I make it more relevant to everyone and I took it out. I plan to publish those sections on my blog instead.

BLOOM: I think there would be a real appetite for your writing in that area. I know I’d be interested!

Friday, March 2, 2018

It's time for the Paralympics. Where's the buzz?

By Louise Kinross

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

My first thought was 'What Paralympics?'

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

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

"I did not know," was his reply.

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

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

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

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

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

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

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

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

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

Wednesday, February 28, 2018

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.

Monday, February 26, 2018

Doctors' disbelief is a common response to rare disease

By Louise Kinross

Laura Howson-Strong is an occupational therapist at Holland Bloorview who has worked with children with disabilities at two ends of the spectrum: as preschoolers readying for kindergarten at our nursery schools, and as teens preparing for transition to adulthood.

At a Schwartz Rounds last year, Laura shared what it was like to work with our families given her personal experience with rare disease. As a child, Laura had pain that oscillated between her stomach, her chest and her joints. Doctors told her parents she was attention-seeking and “making it up,” she says.

As a young adult her symptoms got worse. She was diagnosed with conversion disorder, “where the physical symptoms are real, but are caused by a reaction to stress or psychological trauma.” It took 11 years, several misdiagnoses and a lot of her own research, before she learned she had a rare connective tissue disease called Ehlers Danlos syndrome. Three years later she was diagnosed with a second condition, mast cell activation syndrome, an immune disease.

“When I heard about the Schwartz Rounds on health-care workers who are also health-care users, it spoke to me,” she says. “I thought: ‘Why don’t I tell people about my diseases and experiences? Why am I hiding, so to speak?’” 

“I realized I was keeping quiet because I had a lot of shame and doubt. In the past, I wasn’t supposed to speak about my symptoms, because they were something I was ‘doing’ to myself. But then I learned this was still happening to others. In 2018, children are still given mental illness diagnoses or going undiagnosed when their bodies are failing them. My story isn't uncommon.”

BLOOM interviewed Laura to learn more about how her personal experiences have informed her work.

BLOOM: What is your current job here?

Laura Howson-Strong: I’m an occupational therapist in experience-based employment programs like Youth@Work, Ready to Work and VolunteerAble. A large focus of my job is helping clients and families identify and build the skilled needed for transition to adulthood. It could be learning about job tasks that you can do and like; speaking to new people; ways to market yourself; and thinking about how you learn and how to ask for accommodations.

I’ve also worked in early learning with children with disabilities from birth to six.

Over time, I’ve heard so many similarities in the goal areas of these two populations. Things like: ‘How do I make friends?’; ‘How do I speak up to ask for help?’; ‘What can I do and what do I enjoy doing?’

BLOOM: What’s the greatest joy of your work with teens?

Laura Howson-Strong: I love being able to be part of successes and solutions. In some cases I’m able to see youth and their families throughout their young adulthood, so I’m able to see the change and the progress over time.

BLOOM: Why is Rare Disease Day on Feb. 28 important?

Laura Howson-Strong:
First and foremost, there aren't enough of us to represent ourselves, and many rare diseases go undiagnosed. So we need allies. We need people and communities and organizations to spread the word to bring awareness to these diseases, and to have decision-makers better understand their impact. We need help to advocate for increased funding, knowledge, research, treatment, and possibly cures. I’ve learned that the majority of the rare diseases out there don’t have cures.

For me, I worry that in light of the incredible medical advances going on, a cure for my disease may exist in a cure for another disease. But it might never come to fruition for me, because the right people aren't aware that my disease exists.

Rare Disease day is also an opportunity to celebrate our journeys and uniqueness and beauty and strength. We’re not made to fit moulds, and that should be recognized and honoured.

It's also important because we need to end the unnecessarily complex and sometimes damaging diagnostic processes people experience. Mental illness diagnoses should not be a common step of your medical pathway to getting a rare disease diagnosis.

Right now, denial of symptoms, of services, and of the support we so desperately need within the healthcare system, is a common thread in many of our stories.

BLOOM: What is your diagnosis and how does it affect you on a daily basis?

Laura Howson-Strong: My primary diagnosis is Ehlers Danlos syndrome (EDS). EDS is varied, individual and multi-systemic. It’s a genetic connective tissue disorder with symptoms that range from mild to debilitating. Many of our symptoms have diagnoses of their own.

It affects me daily, all day, every day. The main issues I deal with are chronic pain, joint dislocations, fatigue, gastrointestinal problems and nerve damage.

BLOOM: How do you manage?

Laura Howson-Strong: Daily medications. A lot of them. I also use braces. Some constantly and others at different times of the day. I have ankle-foot orthoses, a neck brace, hip braces, finger and wrist braces. I use a cane for difficult days, long distances and bad weather. 

It's different for each person with EDS, but I manage pain and fatigue through medications, joint injections and positioning—the way I move my body, the way I sit and the way I reposition myself. I set up my days to have a variety of movement and rest activities. I’ve tried a lot of rehab and therapies, and I’ve stuck with swimming therapy and physiotherapy. I’m going to a private specialty EDS clinic in Ohio this year to pay for medical services.

BLOOM: Is there not one in Toronto?

Laura Howson-Strong: Luckily, a new rare disease clinic opened through the University Health Network last year, and I'm on a long wait list for it. At this time, it's a diagnostic clinic only. I look forward to eventually connecting with doctors familiar with EDS through this clinic.

I'll be paying thousands of dollars to go for treatment in Ohio to address loose joints in my neck that dislocate easily. It will likely include Botox, bracing and therapy done by a doctor.

BLOOM: What is your hope for the trip?

Laura Howson-Strong: Pain reduction, better treatment of the symptoms, more EDS-specific knowledge and validation of my symptoms.

BLOOM: You also have an immune disorder. How does that affect you?

Laura Howson-Strong: I have an overactive response to allergens, but it's difficult to determine what allergens because the response is not consistent. It could be clothes, food, the environment or my own heat and sweat. I get symptoms of anaphylaxis such as rashes, swelling, throat closure and difficulty breathing. I take medication to decrease the response, rest, and sometimes go to the hospital. Mast cell activation syndrome can be connected to EDS, but the connection isn't fully understood.

BLOOM: How does having a rare disease add value to your work?

Laura Howson-Strong: I was an occupational therapist first, and a patient second. When I was at school, I had no diagnosis.

When I entered the health-care system as an occupational therapist, I was shocked at how much I struggled to navigate and to speak up. I was educated in health care, yet I became lost and overwhelmed.

When I was diagnosed with conversion disorder, I was shut down by doctors. They would say ‘the basis of this is psychological or psychiatric, and I don’t have the services.’ They refused to refer me on to specialty clinics for the physical symptoms I had.

I lived a few years of my life thinking I was causing this myself. I began to hide the symptoms, the pain, and I just didn’t talk about it. This interview is going to be the first time that many of my friends and family hear that I was diagnosed with a rare disorder, let alone conversion disorder.

One way my experience influences my work is that I really think about how we value the voices of youth. How do we include them in decision-making, and in appropriately understanding their treatment plan and being part of their plan?

I think we're trying hard to do that as an organization, but I still think we have a ways to go to make sure children have their voices and concerns heard during appointments, and have opportunities to get their questions answered in the health system overall.

BLOOM: How do your own experiences with pain and disability inform your work?

Laura Howson-Strong: As a patient, I was so surprised to learn how much the medical system expects of patients and caregivers: to be a system navigator, a doctor liaison, an organizer, a nutritionist, a therapist, a record-keeper. I learned it’s exhausting and sometimes almost impossible.

Today I can better see how much pressure we put on parents to do everything—to keep connected, to be a parent, to be a therapist, to be a doctor, to manage all the appointments, to manage all of the paperwork.

When is there time for parents to self-reflect, network, participate in self-care, or just have fun?

It makes me look at what I expect from families in sessions, and to cut down on the number of recommendations and goals I have. When I set goals with families now, they have to work into their everyday lives and be important in the here and now.

BLOOM: What’s the difference between what’s ideal and what’s doable?

Laura Howson-Strong: We have a tendency within the medical model to want to fix problems, so we give lots of recommendations. We give them with good intentions, but we don’t understand how much it might take for the family to do just one of those things within the day.

With rare diseases and disabilities, you see a lot of different doctors and therapists. You’re given a whole bunch of goals and treatment plans from each one, and the amount of work combined is often overwhelming.

I’m very aware of the guilt clients and parents can have when they don’t accomplish what they were supposed to do. Am I doing everything possible? Should I be doing more?

BLOOM: How have your thoughts about disability evolved?

Laura Howson-Strong: For the last decade I’ve had a firsthand look at how deep the roots of stigma around disability are—the ways people judge those with visible and invisible disabilities.

My disability is primarily invisible. I’m still getting used to being yelled at by strangers for parking in the accessible parking spot. Or trying to figure out what to say to people when they ask: ‘Does your husband regret marrying you?’

I’ve had the experience of crossing the street in downtown Toronto and falling, and I was surrounded by 15 people, and not a single person stopped to help me up. I had to call out ‘Are you kidding me?  have an invisible disability and I need someone’s help.’

I thought I had an understanding of the stigma of disability. But until I became disabled more visibly, I had no idea.

It makes me consider how I build the skills clients and families will need in the health-care system, and in bigger-picture society. Things like advocacy, decision-making, speaking up and resilience.

BLOOM: Do you have any personal advice for youth who feel stigmatized?

Laura Howson-Strong: Trust yourself. Trust your instincts and keep trying. Remember that it’s okay to not be okay sometimes.

Remember that you're not alone. Growing up thinking 'Am I sick, am I not sick?' and then on the other side, having two rare diseases, I've often thought 'Oh gosh. I'm so alone.' But it's important to remember that even if people aren't going through the same thing, there are so many commonalities, so many ways we can come together as a community and group to support each other emotionally.

One of the best things for me is saying 'It is what it is.' I can't control the outcomes, but I can control how I react to it.

We can’t do the health system alone. We need to reach out for help.

BLOOM: How can you find support when your condition is rare?

Laura Howson-Strong: Consider looking up online support groups and communities for disability and rare disease. You could also ask for help from other people in your life, like family, friends, teachers or your doctors or clinicians. There are great youth mentors here at Holland Bloorview. They may not have the same rare disease diagnosis, but they do have firsthand experiences of disability within the health system and the community.

BLOOM: What could we do as an organization to better support families affected by rare disease?

Laura Howson-Strong: At a basic level I wish there was more acknowledgement of rare disease, and access to services. In the health-care system, having a rare disease can restrict your access to clinics, because we don’t fit into the clinic criteria or share the same diagnoses as typical patients. I’d like to see a Holland Bloorview support group or information night for families affected by rare disease.

BLOOM: I would imagine we have hundreds, if not more, families living with rare disease. Jennifer Brea’s film Unrest is creating a lot of buzz about people with rare, chronic illness who are dismissed as being stressed out or mentally ill. What was it like for you to watch that film?

Laura Howson-Strong: Because I haven’t spoken out about my journey through mental illness to rare disease, it was really interesting and validating to hear my own experiences through someone else’s words and thoughts. It really made me feel like I’m not alone in this process, even if the end result is not the same diagnosis. There’s still so much support and love and community that we can give and provide to one another.

BLOOM: There’s a scene in the film Unrest where Jennifer Brea’s husband talks about how their life can feel quite normal and good when they’re on their own. But when they go out into the world, people are constantly reminding them that they aren’t able to do things that their peers are doing.

Laura Howson-Strong: One of the hardest things for me is when people look in and feel sorry for me. Or feel my life could be better. Or feel this can only be a negative thing in your life. Having a rare disorder absolutely turns your life upside down, and things that you wanted, or had planned for, don’t always turn out the way you hoped.

But for every difficult memory I have of my health or the health system, I can think of incredibly positive or funny experiences. Some of my greatest assets have been developed because of my rare disease—like my strength and self-determination, to the point of stubbornness, and my ability to problem-solve. I wouldn’t be the person I am today without the difficulties and challenges I’ve faced.

My disease is progressive. Knowing I may not look the same way in five or 10 years impacts my goals, and what I truly want to spend my time doing. What ultimately matters is I have a family and friends who I love, and I do things in my day that are important and meaningful to me.

Thursday, February 22, 2018

Sadie opened my eyes to reading bias: Audiobooks don't count

By Emily Urquhart

Last week, I encouraged my daughter, Sadie, 7, to cheat at school.

At least she saw it that way.

I’d suggested that during independent reading period she might occasionally listen to an audiobook rather than sight read.

Sadie has low vision but is not a braille reader, so she uses devices like a dome magnifier, an iPad, or a closed-circuit television (CCTV) to read regular-sized print. Sometimes, if the font is oversized (and no, large-print won’t cut it) she can hold a book inches from her face and make out the letters. Digesting her schoolwork aurally can provide a much needed break from this constant visual work-out. Besides, reading is reading, right?

Not according to everyone. My daughter isn’t the first person to suggest that listening is cheating. Adults say this all the time, incorrectly understanding listening to be a passive activity and by proxy suggesting audiobook fans are doing less “work” to achieve the same goal as sight readers.

First, I’d argue that reading is pleasure, enlightenment and access, not work. Second, as a folklorist, I know that stories were oral before they were written. We’ve been literate for 6,000 years, which is a long time, but only a fraction of our evolutionary history. The act of reading partly relies on brain circuits that originally evolved about 150,000 years ago to process language. So sight-reading is actually piggybacking on the pathways used for oral comprehension. This makes sense when you consider that humans have been telling stories since time immemorial, but the novel wasn’t popularized until around the 18th century.

What I wanted to know was how the sight-reading purists had infiltrated my daughter’s belief system when audiobooks and reading-out-loud have been an integral part of our life since before she could speak. My hunch is that it was an inadvertent side-effect of learning in a sighted classroom.

My daughter's sight-reading education is based on a rewards system, meaning that when she reaches a milestone (i.e. 50 books read) she can choose a prize. She does not receive rewards for audiobooks. This has set her up to value sight-reading over audio-reading. It’s also shaping her reading self-concept as she ranks herself against her sighted peers, despite working double-time to view the words in their home reading textbooks. All children compare their reading achievements and kids with disabilities are not immune to this practice.

This means that my daughter sees herself as an average reader despite the fact that she has listened to the entire Harry Potter series five times; that her favourite book is L.M. Montgomery’s emotionally mature, The Story Girl, and that last weekend she listened to Madeleine L’Engle’s, A Wrinkle in Time, on Saturday and on Sunday began listening to Mary Pope Osborne’s kid-friendly interpretation of The Odyssey—arguably the best way to digest this 3,000-year-old oral epic.

I’m proud of these achievements. But I worried. Could Sadie be forming an early reliance on audio when print will also be part of her education experience? I posed this question to University of Virginia psychology professor Daniel T. Willingham, author of Raising Kids who Read: What parents and teachers can do.

First, Willingham explained that there are two components of reading—decoding and comprehension. As my daughter memorizes letters, words and sounds and pairs them together to form sentences, she is decoding. What she brings to the table is her existing knowledge of the world—from the narrative flow of a story to the basics of science, math, history, literature and culture. And this feeds comprehension.

“When it comes to comprehension, for most adults, reading and listening are on par,” Willingham said. But, he pointed out, at my daughter’s stage, reading and listening are serving different functions. Listening to audiobooks helps build knowledge, which is integral to reading comprehension, while the visual act of decoding is a practiced way of becoming proficient at sight reading.

Back when Sadie began the process of learning to read, I asked her vision teacher what would come first for my daughter—reading or mastering her arsenal of vision tools. She’d let the question hover in the air for a moment so that I could find my own answer.

We were sitting together at a child-sized table as I learned how to use one of my daughter’s complex classroom visual aids. It’s a laptop that doubles as a table-top magnifier, connects to the smart board, and has an adjustable arm that you can point at the blackboard to have the image appear on your screen. As I tinkered, the answer came to me.

“She’ll learn to read and use her tools at the same time,” I’d said. “Because the two are inseparable for her.” The teacher nodded. I’d got the right answer.

Learning to decode is an important part of the overall process for a low-vision child who will be a visual learner, so I’ve relaxed my stance on the reading chart. As Willingham told me, “Once you know the notes, you can play music however you like.”

I did consider making an audiobook checklist with the aim of Sadie learning to weigh listening and sight reading in the same way. Then, I remembered an early summer evening when my husband and our two kids began a long road trip and we’d coasted into the night on the melody of Jim Dale’s voice recounting Harry Potter’s first year at Hogwarts. Four hours later, tear-stained and exhilarated, we’d pulled into the driveway of our holiday rental home.

Sadie, wide-eyed and rapt with attention in the back seat, couldn’t bear to have the story interrupted, and, truthfully, neither could her parents. So we left the motor running for a little while longer just to find out what happened next.

Looking back on that night, I realized that my daughter didn’t need a prize chart. She already knew the most important thing about reading: No matter what format, the story is the reward.

Emily Urquhart is a Canadian writer and folklorist and author of Beyond the Pale, a memoir about raising a child with albinism. We interviewed her about the book when it launched in 2015. 

Tuesday, February 20, 2018

Family fund is a lifeline, but demand outstrips supply

By Louise Kinross

Anyone who knows Geoffrey Feldman knows that he's an extraordinary parent.

“I'm not a typical dad,
” he says with a chuckle.

At 76, Geoffrey's raising his 16-year-old daughter Isabelle, who has a rare genetic condition, on his own. 

“Having a special-needs child is extremely expensive,” he says. “If I wasn't working on a contract right now, I'd be finding it hard to make ends meet.”

Since 2011, Geoffrey and Isabelle have benefited from Holland Bloorview's family support fund, which covers items and services that promote child and family wellbeing. 

The donor-supported fund, which has a budget of $250,000 a year, recognizes the extraordinary costs associated with raising a child with a disability.

For Isabelle, it's meant swimming lessons, dance and art classes and being a camper in Spiral Garden, our summer arts program in the ravine behind the hospital.

“Isabelle will need supervision for the rest of her life, so I'm trying to give her these activities that will help her learn to better fend for herself,” Geoffrey says. “These programs
 have given her an amazing amount of confidence. She now has a group of friends that have become her social peer group.”

According to Adva Budin, who administers the family support fund, “equipment, recreation and respite are the most utilized categories. It may be addressing a child’s complex needs with equipment, providing recreational programs to benefit a child’s development, or helping with the cost of respite at home.”

For example, families can apply for a maximum of $1,500 towards equipment like wheelchairs, walkers, commodes and helmets. They can also apply for up to $500 for prescribed medication that isn’t covered by insurance or OHIP +.

A maximum of
 $1,000 is available toward equipment that supports quality of life, such as communication devices and writing and hearing aids. Another $500 can be dedicated to summer camps and swimming, art, music and sports programs.

And parents can get support for their own ”day-to-day coping,” Adva says. Parents can apply for up to $500 to support a respite worker at home or at camp, or a child’s stay at a respite facility.

Another $250 is available to cover TTC passes for families who are not able to access Wheel-Trans.

The fund received 710 applications in the first nine months of this fiscal year, depleting it to the point that new a
pplications are on hold until April 1. 

Holland Bloorview's foundation hopes to raise significantly more dollars to grow the annual fund next year.

“The need is increasing,” Adva says, “especially with President’s Choice Children’s Charity ending its program to support children with disabilities.”

Applications are manually processed by Adva and scored by a group of volunteers. Families need to include a letter of support from a health professional.

Families consistently express gratitude for the program, Adva says. “I frequently hear from families who are purchasing extremely expensive things, like a modified van, and they say every bit of funding they can get is critical. I also hear a lot from families who are fatigued and burned out emotionally, and they need respite. Some people are just so grateful they can put their kids in a swimming program and see them happy and smiling. So it’s the little things, too.

To donate to the program, please click here or call 416-424-3809. Applications for the fund will be available online on April 1.