Thursday, July 28, 2016

Who were the disabled people killed in Tokyo?

Last night I saw a social media link to a story that included photos of people killed in recent mass shootings.

I clicked on it, thinking for a second that it might include photos of the 19 adults killed in a Tokyo home for people with multiple disabilities while they slept in the early hours of Tuesday Tokyo time.

It didn't.

A quick search showed that when 49 people were killed in a gay nightclub in Orlando on June 12, their photos, names and details about who they were as people, appeared in media two days later.

Do you think there's a news outlet that covered the Tokyo massacre that has attempted to secure photos of the victims as a way of telling their stories?

I don't think so. 

To be honest, the social and mainstream media reaction to the deaths has been muted relative to coverage of other mass killings. 

Yesterday, science writer Emily Willingham suggested why that might be the case in this Forbes piece: This Is What Disability Erasure Looks Like.

Willingham notes that the suspect, who had worked for years at the home he targeted, made no secret of what he intended to do, even warning the country's parliament back in February.

"I envision a world where a person with multiple disabilities can be euthanized," he wrote, outlining his plans to "wipe out 470 disabled" people at night time, when staffing was low. He tried to pass the letter to the speaker of the lower house of Japan's parliament and was hospitalized for two weeks as a result.

But the facility that housed the vulnerable people he threatened to kill, Willingham says, appears to have not been adequately warned and prepared.

"What if his letter had instead referenced his intention to kill children or teachers or restaurant-goers?" she asks. "I'm guessing that authorities would have paid a lot more attention to it."

The reason, she suggests, is that as a culture we are quick to accept messages that suggest people with disabilities are less than human. Messages such as: "Better dead than disabled."

The reason we post photos and tell stories of innocent people killed in massacres like this is to assert their humanity.

I wonder how far news outlets will go to do that in this case? I, for one, am waiting.

Wednesday, July 27, 2016

Common brain changes found in kids with autism, ADHD, OCD

By Louise Kinross

A team of scientists at Holland Bloorview, CAMH and SickKids have found similar changes in white matter in the brains of children with autism, attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD). 

In a study of 200 children with autism, ADHD, OCD or no diagnosis, the researchers found impairments in white matter in the corpus callosum in the children with autism, ADHD or OCD. The corpus callosum connects the right and left hemispheres.

The study was published this month in the American Journal of PsychiatryThis CAMH news release gives an excellent overview of the study.

More severe changes were found in the children with autism and ADHD, which are thought to have an earlier onset.

The findings are important "because they tell us that these different disorders share brain biology," says senior author Dr. Evdokia Anagnostou, a neurologist and clinician scientist at Holland Bloorview who is head of the Province of Ontario Neurodevelomental Disorders Network (POND).

Historically autism, ADHD and OCD have been treated as different disorders, but POND is studying them collectively. This research used POND's magnetic resonance imaging data. 

"The more we understand about the shared biology, the more effective treatments we can develop for common problems," Evdokia says.

Monday, July 25, 2016

Care tip: Water safety for kids

This adorable child is Scarlett, 7, who has cerebral palsy and is wearing a personal floatation device at her cottage. You may have seen our new care tip column in the last BLOOM e-letter. This is the first care tip on our blog.

Care tip: Water safety for kids

Summer is in full swing, and for many families that means time in the water—swimming, boating and playing. A 2016 study by the Drowning Prevention Research Centre in Canada found that drowning is the second leading cause of preventable death for kids under age 10. Registering your child for swimming lessons is the first step to safety. Another safe water practice is to have your child wear a lifejacket or personal floatation device (PFD). If the jacket can slip over your child’s chin and ears, it’s too big. Check out these tips from the Canadian Red Cross on getting the right fit. PFDs and lifejackets save lives.

Submitted by Krysta Pigden, Aquatic Program Assistant, Holland Bloorview

Got an idea for a care tip? Send it to Sign up to get our monthly BLOOM e-letter or visit us on Facebook.

Tuesday, July 19, 2016

How to travel Europe by piggyback

By Louise Kinross 

In April we told you about Kevan Chandler, who was planning a summer trip across Europe with friends who would carry him on their backs when places didn't accommodate his chair. 

The itinerary included hopping over stiles in the British countryside, climbing up 600 rock steps to an Irish monastery, and checking out the underground cemetery in Paris.

Kevan and his friends raised over $26,000 to fund their adventure, and purchased a child carrier modified for Kevan's size. Kevan, who lives in Fort Wayne, Indiana, has spinal muscular atrophy. He updated us in this e-mail interview.

BLOOM: How did the trip go overall?

Kevan Chandler: Oh, it was awesome! Things went smoother than we could've imagined, but it was also balanced with enough challenges and 'wrenches' to keep us on our toes.

BLOOM: What was your favourite part of the trip?

Kevan Chandler: There were so many unbelievable parts to the trip, and I had really special moments with each of the guys who carried me. On one of my favourite days, a few of us went out walking through the fields and woods outside Westerham, in England. 

Our host, Mike, led the way and even carried me for a bit. The countryside was beautiful and it was exactly the sight that I'd seen a thousand times in films or from my van on the highway, and always dreamed of exploring myself. So, this was an especially precious experience to me.

BLOOM: Did you run into any problems while being carried?

Kevan Chandler: The gates at the subway were a bit thin, so we had to watch my knees. And we had to be careful at doorways. When we'd hop a fence in the countryside, the guys had to remember they were a bit top-heavy. There were challenges every day, whether we were in the city or out in the country or staying home. 

Some of them we saw coming, some caught us by surprise, but we just crossed each bridge as we came to them. That was one of the things I considered in choosing the group that came, not that we'd have everything figured out beforehand but that we could be creative and work together to figure things out on the spot.

BLOOM: How did the pack that you were using hold up? Was it comfortable for you and your friend?

Kevan Chandler: The pack worked great. We made more modifications as we went along, but it was a good, sturdy apparatus and did its job well.

BLOOM: What advice would you give others with disability who might want to consider this kind of trip with friends?

Kevan Chandler: It all depends on the person, as to what my advice would be. Generally, I'd say to seriously consider yourself and your team, and decide together how to go about the adventure. A backpack worked for me, but it may be something else for another person. You have to decide first what you want to do, and then go about deciding how you want to do it. Don't be afraid to think outside the box, and if you try something and it's not right, don't be afraid to say no and try something else.

BLOOM: Did anything surprise you about the trip?

Kevan Chandler: Everything surprised me about the trip! I made plans and sorted out details, but emotionally and spiritually, I tried very had to go in with no expectations, just see what happens and enjoy the ride. It was definitely a trip in which you had to roll with the punches, go with the flow, but I think that's the best way to have an experience like this.

BLOOM: How did people respond to you and your situation? Did you meet any other travellers with disabilities?

Kevan Chandler: People were inspired, whether they spoke to us or just watched us from a distance. I think what we were doing was so obvious, they didn't need to know the details to be encouraged by it. I loved being on the subway and seeing someone on the other end of the car glancing at us and seeing a smile come across their face. We made their day without a word, maybe impacted their life more than we know. 

And sure, we had some people who just looked at us with confusion, or they saw us and went on with their day unaffected, but who knows how or if that image stayed with them. We didn't meet any other travellers, per say, who were disabled, but one of our hosts in England had multiple sclerosis, and we did see others in passing who also had various disabilities.

BLOOM: What did your friends who went with you say about the trip? Is it something they'd do again?

Kevan Chandler: They loved it! It was funny to me, because they'd thank me over and over for bringing them on the trip. They were physically carrying me, but they saw it as me taking them to Europe, simply because I invited them. This just shows how great they are and how humble. I think they're all up for another trip.

BLOOM: Did you film the trip so that you can turn it into a documentary? 

Kevan Chandler: Yes, we had a film crew of two and they are now working to whittle that 300-some hours of footage down to a 45-minute documentary. We anticipate a spring 2017 release.

BLOOM: Is the film your next project or are you involved in something else?

Kevan Chandler: I'm pretty hands off with the film. I trust those guys completely with it. For the next few months, I'll be speaking some around the country, and writing a memoir-type novel about the trip. Also, we are working with a few other disabled folks and their families to help them have more freedom to travel as well.

Saturday, July 16, 2016

'Superhumans' ad takes the fragility out of disability

By Louise Kinross

My husband loved this 'We're The Superhumans' ad about the British Paralympics team as well as everyday folks with disability. It was produced by UK broadcaster Channel 4.

I wanted to like it, I really did. But while I got caught up in the Broadway style show and the catchy "Yes I can" cover, something about the "I can do anything" lyrics, when paired with elite athletes as well as regular folks with disabilities, who just happen to be independent, didn't sit right with me. 

Most of the adults and children in the ad have amputations and they've adapted by using a different limb or a prosthesis.

This is how a story in Advertising Age described it: "Paralympians make high jumps, score goals, lift barbells and shoot arrows while everyday folks pump gas, take notes, eat cereals, fly airplanes -- just as easily as their counterparts who happen to have arms and legs would." 

Is that statement true?

Is it "as easy" to do competitive sports and everyday activities with a disability as without one? Isn't that a ludicrous over-generalization? And just how are we defining "disability?"

One of the everyday Superhumans featured is Jessica Cox, the first armless pilot who flies with her feet on the controls (she's an American, by the way).  She's able to fly the plane with her feet because her physical disability is singular -- she was born without arms. What if she also had low or high muscle tone that limited use of her feet, or chronic pain, or an intellectual disability? Would flying be so "easy" then? 

What kind of expectations does this ad set for all people with disabilities, including those with multiple disabilities? The ad suggests that disabled people can do anything AND that they can do it on their own. All of the everyday Superhumans act independently. Most have amputations, and we see how they play a guitar, steer a car, drive a plane, care for a child and pump gas with their feet. 

What about people who have conditions that affect many parts of the body and their ability to function? What about people who require help with bathing, dressing, toileting, moving in their wheelchair or communicating? What about people who require round-the-clock care? How do they fit into this "I can do anything" realm? 

They don't. That's why they don't appear in the ad.

"Being a Superhuman is a state of mind," says the ad's creative director. "It's time to stop focusing on disability and focus on superability instead." 

What? Is a physical environment designed for bipeds and not wheelchairs or walkers a "state of mind" on the part of the disabled person? Are unconscious biases against disabled children detected during implicit association testing in adults a "state of mind" in the children? What about North American health protocols (I imagine they're the same in Europe) that bar children and adults with disabilities from admission to intensive care during a pandemic? 

Disabled people have historically been stereotyped as "less than" human. This ad, pairing some of Britain's finest athletes with everyday disabled folk who are independent, suggests they are Superhuman. 

Will people with disabilities ever be allowed to just be human, in its full spectrum, which includes different degrees of interdependence and dependence over a lifetime?

Thursday, July 7, 2016

'Do what you love'

By Megan Jones

This summer, 17-year-old Jeffrey Beausoleil (centre) will crawl through mud, scale eight-foot walls and jump over fire. The young athlete has become a regular competitor in Spartan races—running competitions in which participants battle their way through grueling obstacle courses.

Unlike most participants, Jeffrey was born without his right hand and leg. Still, the Saint-Jean-sur-Richelieu, Que., resident has completed six Spartan races since he began training last year, including Sprint races (5+ kilometres) and Super races (12+ kilometres). This summer, he’s aiming for the Trifecta—by attempting to complete a Beast race (19+ kilometres) on top of a Sprint and Super.

Here, Jeffrey weighs in on building confidence, dealing with bullies and why teenagers need to see more role models with disabilities.

BLOOM: Have you always been an athlete?

Jeffrey Beausoleil:
I played a lot of sports in my childhood, at school and with friends—handball, soccer, volleyball, badminton. But I never participated anything as intense as a Spartan race.

BLOOM: Right. Most people would find a timed obstacle course extremely challenging. I know I couldn’t do it. What drew you to this kind of challenge?

Jeffrey Beausoleil: There were two things. First, the Shriner’s Hospital for Children approached me and asked me to participate as a way to raise funds for them. I said yes right away because they’ve done so much for me. They taught me how to walk. How to use a pen. How to do everyday tasks. And I’m very grateful for that.

The second motivation was more personal. I’d played enough sports like soccer, and was tired of games with two nets and a ball. So boring. I wanted to try something different, something more challenging. The Spartan race, with its obstacles and its finish line felt like a good idea.

BLOOM: Raising funds is an admirable goal. But do you also get anything out of the races on a personal level?

Jeffrey Beausoleil: When you’re on the course, you cycle through a lot of emotions. Sometimes you feel happy and other times you think to yourself, “Why did I sign up for this?” But when I finish the race I’m always in a great mood. Most of the time I cry. I think having a disability makes the whole thing more emotional for me. I feel a sense of accomplishment. At the end of the races I always think, “I can’t believe I actually did it.”

BLOOM: What sort of adaptations do you make on the course?

Jeffrey Beausoleil: Every time I race I ask family or friends to come with me. You need to use two hands for some obstacles, so I can’t do them alone. During my first race, my best friend Michel helped me with those.

People at Spartan races are very open-minded. I’ve never seen anyone doubt me me at the race. We’re like a big family when we run. Everyone believes in and supports one another.

BLOOM: What about outside of the racecourse? How do people typically treat you when they first see you in public?

Jeffrey Beausoleil: Some people are scared of me. Especially younger people, I can tell. Older people ask me a lot of questions—about how I got my disability or what kinds of tasks I can and can’t do. Curiosity and fear are the typical reactions I get.

BLOOM: Have you ever felt isolated as a result?

Jeffrey Beausoleil: When I was younger I did. My friends could go out and do stuff that I wasn’t able to do. I also used to get bullied a lot. People used to tease me. That left me with really low self-esteem and I was scared to approach new friends.

Then, when I was 12 or 13 I got jumped. I was getting off the bus and a group of guys that was standing nearby made a rude gesture at me. I made the gesture back at them, and they came over to me. They took my prosthesis off and they beat me up.

BLOOM: That’s awful, I’m so sorry.

Jeffrey Beausoleil: It’s okay. Weirdly, after that was when I started to gain confidence.

BLOOM: What changed for you?

Jeffrey Beausoleil: After I was beat up, I had a conversation with my dad about my disability. It lasted, like, two hours. He told me that he loved me. And he reminded me I had much more courage than anyone else he’d met. He also made me realize that I can’t change my body. Even if I cry or dwell, I will still have a disability. So it sank in that I had to accept myself. There will be doubters and haters all our lives. We need to prove them wrong.

BLOOM: Is there anyone else in your life that’s helped you build that self-acceptance?

Jeffrey Beausoleil: These days I feel really well-supported by my family and my friends, and a lot of times my peers don’t even realize that I’m different, physically. I’m sort of the class clown. I’m the only one that makes light of my disability. Sometimes my friend will be like, “Yo, come and help me hold this,” and I’m like, “I can’t…I only have one hand dude.” They forget about my disability because we’re so close. And it’s better to laugh about my disability than to dwell on it. At the end of the day I don’t feel like I’m different. Because I’m not. I’m not different. I’m differently abled.

BLOOM: What advice do you have for teenagers with disabilities who are still trying to gain that self-confidence? A lot of people say 'believe in yourself.' But that’s easier said than done, no?

Jeffrey Beausoleil: The biggest challenge of having a disability is to be able to genuinely believe in yourself. Because you're always thinking about how people perceive you. It’s not physically having a disability that’s hard for me. It’s what people will think: will they accept me? Will they reject me?

I’d tell other kids with disabilities, 'Do what you love.' If someone tells you that you can’t, don’t listen. Do it anyway. If you can try out one thing you’re afraid of, you might be more willing to try another thing that makes you scared. Over time, you’ll become more sure of yourself.

BLOOM: Do you still spend a lot of time worrying about what other people think of you?

Jeffrey Beausoleil: I rarely worry about my disability anymore. I’m more concerned about what people are going to think of my outfits [laughs]. That’s a classic teenager thing, I guess.

Recently I’ve actually been trying to stand out. I mean, my body is already different. I don’t want the rest of me to look like just another person in the crowd. I want to own that difference. Besides, at my school they all wear saggy pants and big t-shirts. I’m going for a classier look.

BLOOM: Have there been any upsides to having a disability?

Jeffrey Beausoleil: Lots! On top of doing sports, I love to create music. I think I got into that partly as a result of my disability. Music helps me get my anxiety and stress out. Throughout my life, working on music and listening to it has helped give me a break from my problems.

My disability gave me a strong imagination, motivation. If I wouldn't have had it, I wouldn't run Spartan races. I wouldn’t have gotten into music. Honestly, I would probably be, like, a gamer. So overall, my disability is an upside. And I’m proud of having it.

BLOOM: What are you hoping to do in the future?

Jeffrey Beausoleil: My biggest goal is to be able to work as a DJ. Music allows me to express my emotions. I can describe how I feel and who I am and I never feel restricted when I’m making music.

If I become famous, having a disability will be a good business shtick for me. You don’t often see artists with disabilities in music. So people will be like, 'Oh my God, look at this guy. He’s a DJ and he only has one hand [laughs].'

But seriously. We need people with disabilities in sports, music, art. It would be inspirational to younger people. Teenagers need to see role models so that they can believe they’ll grow up and do the same things. I know it would have made a difference for me growing up. I think I would have become more confident younger.