Wednesday, March 21, 2018

My jar of awesome

By Louise Kinross

Lots of amazing things happen in my son's life, things that fill my heart with gratitude. But too often those memories get lost amid the challenges and worries of raising an adult son with disabilities.

Now I'm going to write those great things down, and put them in a glass jar, so I don't forget them.

The idea came from Sazini Nzula, a Montreal mother of two boys with autism and the author of Beautiful Inside and Out: What You Ought to Know About Autism. I interviewed her a couple of weeks ago.

Sazini told me about the 'jars of awesome' she keeps for her sons. They decorate two large glass jars. Then when her kids do something wonderful or have a great experience, she writes it down on a piece of sticky paper and puts the paper in the jar. She writes something each evening and watches the jars fill up. "My plan is that if we go through a really challenging time during the year, I will pull them out to read," Sazini says. "And certainly at the end of the year, we will read them to remember what happened." 

Here are two memories for my son's jar.

A week ago, my son's worker sent me the photo above. My son volunteers twice a week by cleaning at Variety Village. He also takes personal training with a coach there. The personal training helps keep him fit at a time when he's coping with a severely curved spine.

"I went to go get Ben for lunch and I found him walking on the treadmill," the worker wrote. "He was increasing the speed by himself. I snapped a pic before he realized I was there."

You'll notice that he set his broom and dustpan beside the treadmill.

What was amazing was that Ben decided to get on the treadmill and exercise himself. Usually he has a personal trainer with him. Due to his physical disability he has issues with balance and coordination, so the trainer usually starts the treadmill and changes the speed.

"On our way to lunch, he stopped at a couple of machines and did some arm workouts," his worker wrote. Again, he's used to doing the machines with his trainer, but now he felt comfortable enough to do them himself.

Working out on his own is the first note that will go in my jar. 

The second note is about when Ben took his speech app on an iPad with him to a L'Arche arts program he attends. 

Ben has always resisted using his speech app. However, in the last few weeks he started using it to tell me which animal he wanted to paint. As a result of attending the arts program at L'Arche, Ben now enjoys drawing animals and then painting them. What's interesting is that because of the speech app, Ben can more easily tell me which animals he wants, and they are always somewhat unusual ones. He'll choose the Gibbon ape, or an opossum or a camel.

Last week Ben agreed to take the speech app to L'Arche, but I was doubtful he would use it. 

When my husband picked him up, the teachers were excited to say that Ben had used the app to suggest the group draw a scorpion. And then Ben drew a really cool one. Because he doesn't have a signing worker with him in this program, he's had limited ability to express himself, and people probably don't have a sense of who he is inside. Choosing the scorpion was something very specific and personal.

So those two happenings are the first I'll be dropping in my jar of awesome. They may be small things to other people, but to us they are huge. 

Let me know if you decide to create your own jar.

Tuesday, March 20, 2018

Why is using electric shocks on disabled students a non-story?

Members of disability rights group ADAPT protest the use of electric shocks on disabled students in front of FDA Commissioner Scott Gottlieb's home in Washington, D.C.

By Louise Kinross

What if you heard that a school used electric shocks on students for even minor infractions like refusing to take a coat off, closing their eyes for 15 seconds in their seat, or crying?

I first heard about the Judge Rotenberg Center (JDC) in Canton, Mass. WAY back in 2012. That's when I signed a petition by a former staff member to stop the electric shocks used against children and adults with autism and other developmental and emotional disabilities in their day and residential programs. That petition was signed by over 260,000 people.

In 2016, the FDA proposed banning the use of electric shock devices because it “determined that these devices present an unreasonable and substantial risk of illness or injury.” But the proposed regulation sits in limbo, and students at JDC continue to be shocked.

For the last two weeks, members of the disability rights group ADAPT have been camped out in protest in front of FDA Commissioner Scott Gottlieb's home in Washington, D.C. That's a photo of them above.

But no mainstream newspaper has covered the protest, or the story of the students who continue to be shocked.

Now the members of ADAPT have been told they'll be arrested if they don't vacate the camp they've set up.

In 2014, the Autistic Self-Advocacy Network wrote this history of the school's use of electric shocks over decades, noting it had been condemned by current and previous United Nations Special Rapporteurs on Torture:

"Children and adults at the JRC who are subjected to electric shocks are shocked on their legs, their arms, the soles of their feet, their fingertips, and their torsos," writes the Autistic Self-Advocacy Network. "Often, they are shocked for years, even for longer than a decade in some cases. These shocks come from a remote-controlled backpack, called a Graduated Electronic Decelerator (GED), which is attached to the student’s back. These shocks have been known to cause blistering and painful red spots on the students’ skin. Additionally, the GED-4 was created to be even stronger than the GED-1 and therefore has potential to cause more pain and more injury. Some students receive hundreds of shocks per day. One student received 5,000 shocks in one day...

"There is a disproportionate number of students of color within the JRC. Forty-five percent of JRC students are Black, and 28 percent are Latino. One psychiatrist who visited JRC described it thus: “Street kids, kids of color, carrying these shock backpacks. It is prison-like and they are prisoners of the apparatus.”

What is it about North American culture that makes physical abuse of disabled children and adults a non-story?

Last week, CBC reported 2014 Statistics Canada data that showed Canadians with disabilities are almost two times as likely as others to be the victims of violent crimes.

Way back in 2012, the World Health Organization reported that children with disabilities were 2.9 times more likely to experience sexual violence and 3.6 times more likely to endure physical violence than non-disabled children. This was based on 17 studies in high-income countries.

But in Canada? Aren't we better than that? Apparently not, according to our new data.

Judging by the lack of media coverage of the ADAPT protest, shocking disabled American children and adults in a way that's considered torture by the United Nations is not news.

For a personal story from a former JRC student, please watch this video

Monday, March 19, 2018

A son shows his family the way home in Love, Hope and Autism

By Louise Kinross

Robert Fresco is a professional filmmaker, so when his twins Fraser and Hallee were born, it was natural that he’d turn the camera on them. His exquisite home movies are the backbone of Love, Hope and Autism, a CBC Docs POV piece. The film covers the family's idyllic early days, the unravelling of Robert's marriage to Shannon Wray when Fraser is diagnosed with autism, and how the family regroups to co-parent with the addition of Shannon's new partner Tim.

'Hope' is in part a reference to Hope, B.C., the town, surrounded by mountains, rivers and lakes, where the kids lived with Robert for a couple of years. The film begins shortly after the twins’ birth in Ontario and culminates with their 21st birthday. BLOOM interviewed Shannon about what she hopes viewers take away.

BLOOM: I felt so much emotion watching this film. I pulled it up thinking I’d watch for five minutes, and I couldn’t stop. What was it like for you to watch the film?

Shannon Wray:
It really evoked a lot of emotion around when Hallee and Fraser were little for me. Seeing the magic of movies, that slow-motion piece of Fraser staring at the farm, it really took me back to that moment of ‘wait, something is not right,’ and that first inkling of fear. On a certain level I wanted to say ‘no, we’re going to freeze frame here and take a different path.’ I had really profound feelings watching Fraser become autistic in the film.

BLOOM: Was it a difficult decision to make the film?

Shannon Wray:
The really difficult parts of the film for me were when Fraser was lost on the mountain and his accident last summer. I had pictures in my mind of what that might have been like, but I wasn’t there, and I didn’t see it at the time. To be put back in that situation in such a visceral way was very difficult.

BLOOM: Yes, it’s unusual that you would have footage of Fraser in Emergency, but as Hallee noted, the camera was almost like a pair of glasses to Robert.

Shannon Wray:
 (Laughs). Until the nurse told him to turn it off.

We screened the film with Fraser recently and his responses were really interesting. He’s used to seeing footage of himself when he was a kid, but when I became emotional about his diagnosis in the film, he became very agitated and started saying ‘It’s okay, it’s okay.’ When Robert got emotional, he had the same response. He didn’t want us to be that upset.

When he saw the first frames of the waterfall where he got lost, he said ‘That’s dangerous, I don’t want to go there.’ We’ve never known where he was or what he thought, because he’s never been able to communicate it to us. He also said ‘It was so dark and I was very scared.’ When the first shot of the stretcher appeared he got up and left the room.

He came back and at the end of the film he said ‘My family all love each other.’

BLOOM: That really struck me watching the film. That the family is reconfigured, but there is still so much love. The scenes where Hallee is interviewed are very candid. Did she have any hesitation about participating?

Shannon Wray:
She did a bit, but it was really interesting. After the years she spent in Hope with her dad, she became very emotionally closed off, and it was a long journey for me to get her to open up again. As we were approaching the film interviews, she said ‘They’re going to rip me open, and I think it’s time.’ She’s a very thoughtful girl. She knew she was sort of frozen up inside. and this is what it would take to get over it.

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

Shannon Wray:
Robert and Tim and I have parented together as a pod for many years—across borders and across boundaries. Through shattered relationships, we’ve taken the shards of our experiences and put them together into something unique and loving. That’s what I wanted people to come away from the film with. That even if primary relationships can’t be sustained through the stresses of living with a differently abled child, there’s still a way to put a family together out of all of that.

The other narrative that isn’t talked about enough is how much of the oxygen was sucked out of the room for Hallee, for the sibling.

BLOOM: Were you aware of how left out Hallee felt when your kids were living with Robert in Hope?

Shannon Wray:
Hallee and Fraser were the same age and quite interdependent, so on one level, because they’re twins, we always had this feeling that all they needed was each other. Something the film didn’t explore was that one of the reasons I wasn’t there in Hope was that I was taking care of my sister, who was dying of terminal cancer. I knew Hallee really needed me, but I had made a commitment to be with my sister till she died.

BLOOM: Can you describe Robert’s relationship with Fraser?

Shannon Wray:
Because Fraser couldn’t latch and breast feed productively, and had really bad digestive issues, the doctors told us to get him on a bottle. As soon as he went on the bottle, Robert became his primary nurturer, because I was breastfeeding Hallee.

So Robert would sit and feed Fraser, and Fraser became more bonded with Robert, and they continued on with that bond. Then, as Fraser grew, Robert became incredibly fascinated by him because Fraser was very different. He followed him more with the camera than Hallee. What we realize now is that he recognized some aspect of himself in Fraser, too.

BLOOM: Yes, I remember one part in the film when Robert says he thinks he’s on the spectrum.

Shannon Wray:
Not having to talk and be emotionally engaged at a deep level with Fraser was very freeing for Robert. He and Fraser just loved being in one another’s presence and doing things. They’d go on bike rides or canoeing. Fraser feels so free when he’s riding a bike. And he loves the quiet of the paddling in the canoe. From a sensory level it’s very still.

BLOOM: There’s a part in the film where you’re living away from the family and your young daughter calls and says her dad isn’t around and she doesn’t know where he is. Was Robert just absent-minded, or was he having other issues?

Shannon Wray:
This is where a diagnosis of Asperger’s would make a lot of sense in our lives. Robert would get an obsession of some sort. That time he had seen an ad for a car he was interested in on Vancouver Island, and he left the kids and went to look at the car. It took him a few days to figure that out, during which time the kids were at home with no ability to cope for themselves.

BLOOM: Looking back, is there any advice you’d give parents about the impact of a child’s autism, or other disability, on a marriage?

Shannon Wray:
When Fraser was diagnosed it felt to me like that was the time for us to really pull together, dig in and figure out what we needed to do to help Fraser and Hallee.

But Robert went into ‘Oh well, Fraser is Fraser and that’s fine. It’s all going to be okay.’ I went in to research overdrive—where do we find services and what do we do? I was trying to form a strategy about how we would get through this, and I felt very much alone.

BLOOM: I think that's very common, that people cope with a diagnosis in really different ways. I know in our family, my husband always felt I was over-reacting about things, and I always felt he was under-reacting.

Shannon Wray:
Yes, one parent becomes the over-functioning one, and, as a result, the other becomes the under-func
tioning. They can’t figure out where to jump in. Instead of making room for Robert, I was like ‘I’m going 90 miles an hour this way, if you can keep up, hang on.’

BLOOM: How did you manage to stay so connected as a family after you and Robert separated?

Shannon Wray:
In most cases it doesn’t work out that way, because so much anger and resentment builds up. One of the things I didn’t want was for my children to experience a lot of conflict between their parents. It wasn’t avoidance—I didn’t just swallow my feelings and shut down. I worked very hard to be a friend to Robert, and he worked very hard to honour that friendship, too. And when Tim came into our lives he tried to find his way into the family very gently and was very respectful.

BLOOM: Where is Fraser now?

Shannon Wray:
He’s with us in Southern California in a tiny mountain village where Tim and I both grew up. He goes to school in the town at the bottom of the mountain. He’s 21 and finishes school in June.

BLOOM: Are there any program options for him after school?

Shannon Wray:
No. The way that people with disabilities are managed in California is through regional centres, and the one we’re associated with is where the San Bernardino massacre happened. They manage almost 35,000 cases, and the programs are overwhelmed and underfunded. If we stay where we are, we’ll be on waiting lists, which is what happened when Fraser was little. We’re probably going to need to move to another state. If we aren’t able to commit to a job skills training program, we’re probably going to have to try to fund some sort of co-op program with other parents ourselves.

BLOOM: It’s incredible what falls on families. I know some parents are able to create businesses for their adult kids, and they devote their lives to the business. But not everyone is able to do that, for many reasons.

Shannon Wray:
I know several parents who took out loans to set up a coffee shop and bakery. Their children were involved in baking, serving coffee and making and selling crafts. It was very creative. But when the parents got into their '70s, they burned out. They couldn’t do it anymore, and they couldn’t find younger people who had the desire and will to make it sustainable. There is an endpoint.

BLOOM: I understand that Hallee has agreed to be Fraser’s caregiver in the distant future. How did Hallee come to that understanding?

Shannon Wray:
Hallee has always understood that she will ultimately be Fraser's caregiver, eventually. That's her choice, it's not something that we've told her she has to do. In fact, we've consistently told her that we will do everything we can to ensure that she has her own life, without Fraser, for as long as possible. The only promise I have asked of her is that she will do everything she can to keep Fraser from being in an institutional setting. Hallee was about 17 when she told us that she would be responsible for her brother.

Canadians can watch the entire film Love, Hope and Autism on CBC Docs POV.

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.