Thursday, July 23, 2015

Team Bryson: Quiet but mighty in NYC parade

By Laura Williams

Last weekend, my family decided to take the ultimate road trip to New York City. The idea started about five months ago when Louise at BLOOM
wrote about the NYC Disability Pride Parade.

This parade was conceptualized by a father and famous jazz musician Mike LeDonne. He wanted to raise awareness and create community pride about disability to honour the pride he feels for his daughter Mary, who has Prader Willi Syndrome.

The disability community in New York City jumped in with both feet and members from the community led the charge—creating awareness about the event, getting permits, planning the route, and connecting with participants. It was an example of inclusivity in action.

Participating in this event was important to us. As a family, we have experienced amazing examples of inclusion, acceptance and kindness. Unfortunately, we have also experienced heartbreaking moments where we’ve not only been blocked access but asked to leave due to our son Bryson's vocalizations—he is non-verbal and makes sounds to express himself.

Walking side by side with others who have lived this kind of experience in New York was very powerful. What struck me was how quiet the march was. Parades are typically rowdy and loud and expressive.

At this parade many of the people around us were non-verbal. It was much quieter, but no less jubilant and meaningful. Voices that aren’t loud can be missed—but not when people come and walk together, making their presence undeniable.

This reminded me of how very important it will be to continue being visible in our community, looking for any opportunity to include our son in “everyday” activities even when it means we will have to face glares, stares and confusion. That is no longer my burden, it is theirs.

I was so very proud that day to be included in this community—one that demonstrates the elegance of quiet and the boldness of the human spirit. We have so much still to do to ensure all people have the opportunity to lead a dignified, fulfilling life—and I want to be part of that transformation!

Laura Williams is director of Client and Family Integrated Care at Holland Bloorview.





Tuesday, July 21, 2015

Why is Guy Mitchell's death receiving so little coverage?

By Louise Kinross

It's shameful that the death of Guy Mitchell (left), an adult with disabilities who drowned after falling into a cistern at an Ontario-funded group home in 2012, is only being reported locally in Hamilton, and not across Ontario and Canada.

Hamilton Spectator reporter Susan Clairmont is doing a top-notch job of recounting the horror story unraveling at a coroner's inquest in this series of articles. The Ancaster home was run by Choices, an agency that receives 87 per cent of its funding from the Ontario Ministry of Community and Social Services.

An 11-year-old girl with autism and two adults with developmental disabilities lived in the home, which veteran police who responded to the death described as the worst they'd ever seen: no heat, water or food and human waste everywhere.

For months, outsiders contacted all the right authorities to raise alarms about the residents wearing filthy clothes and having unexplained injuries, but no one did anything.

Two starving horses and a dogs were seized from the premises. 

But no one came for the human inhabitants. 

Until Guy Mitchell drowned.

Monday, July 20, 2015

Love speaks louder

By Emma Ockerman

I've had this conversation 50 times already. I stand on my front porch as my hand just brushes the brass-plated door knob and I turn to speak to a new friend who waits to enter my abode.

It could be called a warning, even.

"Listen," I say gingerly, as if I'm telling them their cat has passed. "Before you come in my house, you should probably know about my brother..."

They nod. They have heard from others before, and their nonchalance allows me to believe that their entrance into my house will be the breakthrough of normalcy I've never had with a friendly introduction.

But then I open the door.

My 15-year-old brother Tristan tends to be a recluse from society in his room, but he always takes the chance to meet me by the door when a new friend is being introduced. One hundred and twenty pounds of ignorant joy in an adult diaper, he holds a red ribbon and a "sippy" that supplies his liquid diet. Tristan's bib is fashioned out of a bandana that gives him a slightly ridiculous cowboy affability.

But he can't help it. I have never expected him to be anything but himself.

Tristan is severely autistic, but it doesn't really cross my mind until a new friend is standing beside me, their eyes shifting from my brother, to the floor, to me.

"What do I do?!" they silently plea and I would tell them if my brother wasn't already staggering towards them
hand outstretched, wet with drool.

"Hi there!" they say, falsely chipper. But Tristan is mute, so he drags them to whatever location in the house he sees fit at the time.

Tristan makes the rules to which everyone must follow.

He drags anyone who obliges to his small red cooler beside the kitchen sink, which holds his "sippies" containing a mixture of Ensure and Lactaid. Tristan coaxes them to open it and give him something to drink.

Anyone who has a heart, or essentially fears what he will do if they don't comply, plucks a "sippy" for Tristan and follows him to his room to enjoy The Little Mermaid on his monument of a television. It may not be polite on my brother's part, but he's not accustomed to his own company.

I am never looking at my brother at this point, but the house guest. My capacity to love a friend lies in their capacity to love my laughable, and maybe only in my eyes, adorable brother. My introductory speech doesn't lessen the shock in their eyes when they soak in Tristan's undeniably mentally challenged face.

But at this point, I have never had a friend deny the hand of my soon-to-be 16-year-old brother. To reject Tristan would not only be rejecting my friendship, but the friendship of a boy whose disorder has blessed him with the inability to hate anyone.

And they probably wouldn't want to face the wrath of me, his big sister, if they did.

Editor's note: About 16 or 17 years ago, I met Tristan and Emma in Michigan with their parents Jude and Steve. In addition to autism, Tristan has Langer-Giedion Syndrome, the same genetic deletion that my son Ben has. We had taken Ben to see a speech therapist in Michigan and had made contact with the Ockermans through a parent support group. All these years later, as Tristan turned 19, I heard from Steve. He told me about this story his daughter Emma wrote when she was in high school. She's now studying journalism at Ohio University. I particularly like the headline she chose.

Friday, July 17, 2015

How I became a sister to my brother with autism

By Melissa Ngo

I was taught that I was the expert. The “go-to” person. As the sister of someone with autism, I was the translator, the teacher, the therapist, the person who explained, the mighty protector and defender. As a child, I assumed these roles without question. For my brother Scott, I wore all of these hats at once.

I was a “good” sister for doing therapy exercises with him. When he couldn't find the words, I spoke for him. I was even the sister who swore and swung at the other kids for calling him names.

One time another student came right up to my face and said “Your brother is a stupid retard.” And the sound of that last word barrelling out of his mouth made me cringe, and I felt the long sear of his disgusting words. I swung and yelled at him and he ran away.

Later that day I went home and wrote down questions about a colourful book that my brother had borrowed from the local library. After all, he needed to work on his comprehension. We read the book together, and it was a nice feeling to read a book with Scott.

Then I told my mom about how that student made me feel terrible. The other child was wrong, she said, and didn't know any better. Scott was lucky to have a big older sister like me, my mom said. But please don't swing at the other kids next time! Right before bed, I thought, “I hope that if the same thing happens tomorrow, it happens to me, rather than Scott.”

All hats were on that day.

While I don't regret those swings, I realized in my teen years that I had to shed some of these roles. While it was great to feel like the expert on my brother—to be the person who wanted to know my brother the best out of everyone in the world—I realized that perhaps not wearing every single hat, one of top of each other, was the best thing for him or me.

Growing up Scott attended programs to improve his deficits in “social skills and communication (imagine being defined by what people say you don't have).” These services were a long drive to Toronto from where we lived in Markham. The people running them didn't seem to genuinely connect with Scott, and there was a strict relationship between the therapist and Scott. They gave him worksheets that were for a young child and he couldn't relate to them. We paid some serious money for these services.

Oddly, what ended up being most beneficial for Scott was right at home! My friends came over and he'd hang out with us, people who were his own age and non-judgmental. And it didn't cost anything!

Scott was happy and he would sit with us and focus on the interaction. My friends would say “Hi Scott. How are you?” and they would wait for his reply. With us, Scott was social, engaged and communicating. Was it magic? Or was the American Psychiatric Association's diagnostic manual, known as the DSM, unable to define every person with autism? With my friends, Scott didn’t need a defender. He didn’t need a therapist. He didn’t need a translator. He didn’t need someone explaining what 
autism really is (and really isn’t).

This was when my friends and I decided to start a high school club called Hand Over Hand. We put posters up around school telling people about different disabilities. We started a social group (free, run by youth volunteers, and very recreational). During university, we continued to work with local organizations and businesses in the community that helped us with the social group.

We started a Pen Pal Program between our members with disabilities and our volunteers to help everyone feel more comfortable when we got together (this also helped with hand writing and computer skills). It's 10 years later, and we've incorporated as a nonprofit organization. We continue to run three programs regularly, and we throw the only accessible music festival for people with disabilities in York Region. Hand Over Hand was founded on friendship and collaboration. Not only do our members work on personal goals, but they build strong connections with the people around them, and feel safe and empowered in their community.

Hand Over Hand sprouted because I realized I didn’t have to be a pathologist, transcriber, or a knight to my brother. I didn't have to wear each and every hat. I just had to be his sister.

And this is not to say that I never wear any of the hats anymore—sometimes I still have to wear a hat or two and that’s okay (in fact, I like to think of the hat I wore at 14 years old when I told the school board that they need to pay attention and step up their game).

I also wear new hats. Today I find myself explaining “neurological differences” rather than autism or translating words like “retard,” so people know why it's offensive.

Over the years, I've seen that while ignorance in the community still exists, there are people who care, people who want to learn and eradicate discrimination. From a young age, I knew I didn’t need anyone’s pity about my brother’s autism diagnosis, because it's a part of him that he shouldn’t have to feel ashamed about. I used to say that Scott is, first and foremost, my brother. But perhaps I could have simply said: I am his sister.


You may also know Melissa Ngo as a family support specialist in Holland Bloorview's Family Resource Centre. Tomorrow (July 18) Hand Over Hand is hosting an amazing, accessible music festival in Thornhill. For more information, e-mail info@handoverhand.ca  


Tuesday, July 14, 2015

A creative gem in the heart of Toronto

By Louise Kinross

This morning my son and I visited an arts program at L'Arche Toronto.  Sol Express runs two programs during the year: One is for actors with disabilities and the other is for creative artists with disabilities.

They each run two days a week, from 10 a.m. to 3 p.m.

The L'Arche building in the Pape and Danforth area is a beautiful renovated church with studios upstairs. I wrote about visiting the original L'Arche community, founded by Canadian humanist Jean Vanier, in France a couple of years ago. L'Arche brings adults with and without intellectual disabilities together to live and work as peers in 147 communities around the world.  

The summer is a little bit different at Sol Express, but my son and I dropped in on some warm-up exercises for performers. We sat in a circle and did some name games with gestures with two artists leading the group and about six other participants. By the way, I just wrote down every single one's name, so the game worked.

We had a tour of the art studios, which reminded me of some of the things you'd expect to see at Holland Bloorview's Centre for the Arts. There was a cool paper mâché forest of trees, a gorgeous book of photos of participants wearing elaborate masks they'd created, and a large assortment of hats and costumes.

Other memories include watching a funny, black-and-white, silent movie the performers had produced, in costume, and my son strumming a blue ukulele while a leader played Stand By Me and Rock Around the Clock on her guitar.

Sol Express is a welcoming, kind place. I could see my son developing friendships there. I liked being there and being included.

Monday, July 13, 2015

'I wish [disabled] dolls existed when I was a kid'

By Jessica Geboers

When I was little I pushed my red and blue kitchen booster seat around the floor on my tall knees, pretending it was a wheelchair for my doll. Like many kids, I played house with dolls, often pretending I was the mom and they were my children. I can’t remember if using the booster as a wheelchair was my way of compensating for the lack of disability representation in my toys. But maybe it was. Kids act out what they know. It was perfectly normal for me, a child with cerebral palsy, to pretend I was the mother of child with cerebral palsy. And, for lack of a more accurate option, I had to use my imagination.

There aren’t many toys that depict the story of a person with a disability. However, all minorities have struggled to get representation from the toy industry.


There was Share A Smile Becky, a Barbie I had in my vast 1990s collection with a pink and purple wheelchair with sparkly wheels.

Her unfortunate title aside, I remember thinking it was cool to have a Barbie that reflected at least part of my reality. However, her time on store shelves  was short lived and she’s since been discontinued.

Some progress in diversity is being made. Mattel
announced last month that they’re introducing 23 Barbies with different eye colours, hair colours, skin tones and face shapes. Until now, most Barbies were blonde. Unfortunately Barbie’s skinny body shape, which has been shown to be anatomically impossible, remains unchanged. Most girls and women, including those with a spectrum of body sizes and abilities, don't see themselves reflected in these dolls.

Cue the
Toy Like Me campaign, which debuted in April. This Facebook and Twitter initiative was started by three British women: journalist Rebecca Atkinson, who’s deaf and visually impaired; Melissa Mostyn, a deaf writer whose daughter has cerebral palsy; and Karen Newell, a former play consultant whose son is blind. They're asking social media users to join the campaign by sharing images of toys, often handmade or altered, “that reflect disability positively,” as well as letters from children asking the toy industry to create “toys like them” using the hashtag #ToysLikeMe.

“When I was growing up, I never saw a doll like me,” Atkinson said. “I had two hearing aids. In the real world, there were people like me. In the doll world, I didn’t exist. What does that say to deaf and disabled children? That they aren’t worth it? That they’re invisible in the toys they play with? That they’re invisible in society?”

A month later
Makie Lab, a 3D printed, made-to-order doll manufacturer out of London, England, answered the call by creating three dolls with visible disabilities or differences: one has vision loss and uses a cane, another comes with hearing aids or a cochlear implant, and the final one has a red facial birthmark. “It’s a pretty even race between the three, but Hetty (with hot pink hearing aids) is leading [sales] right now,” the lab told me in an e-mail.

“It’s fantastic that our supercharged design and manufacturing process means we can respond to a need that’s not met by traditional toy companies,” said
Matthew Wiggins, chief technology officer of Makie Lab. “We’re hoping to make some kidsand their parentsreally happy with these inclusive accessories.”

Judging by consumer comments on the Makie website, many are happy with the dolls that include disability storylines. I'm also happy. I wish these dolls had existed when I was a kid.

An argument can be made that it’s up to parentsnot a toyto help a child with a disability feel comfortable and confident. But I think these dolls are a helpful tool. And they’ll broaden the awareness of other children and families, too. After all, you can’t adjust to something you’ve never seen or played with.




Friday, July 10, 2015

School's out

By Louise Kinross

Hello peeps!

Quick update. My son had his surgery to remove two benign bone tumors two weeks ago. It went much better than planned and his incisions are healing nicely, though he still has some pain. We had very good care in the hospital.

My son is now out of the school system. We have been unable to access person-centred planning or an increase in our Passport funding since he left school. I am advocating for this now.

Today my son and I visited a day program. It's in an industrial warehouse so it's kind of isolated. The people were very friendly and we recognized some people. They were setting up for a barbecue. Unfortunately they don't do sign language at this program. I think it would be a nice social environment for my son, but I don't think he would be able to work on the job skills he was developing at co-op. Because he doesn't speak and wouldn't have anyone actively signing with him, I think he might get lost there. The program costs about $1,500 a month for Monday to Friday, 9-3. That adds up to a lot of money.

We have been on the Developmental Services Ontario wait list for community supports like day programs, case management and person-centred planning, and not received any service in the last three years. My son's support needs, as assessed by DSO, are greater than 70 per cent of those on the wait list, but apparently our family is not "at risk," even though my son is not able to stay on his own at home (which makes having two parents work a little difficult).

I will be sharing our journey as we try to find meaningful things for him to do. That could include work or activities in the community with a support person, or some kind of program. I wish I had the ingenuity and guts (and money) of some parents who have created businesses for their children. Would love to hear any stories from people here on the topic.

Today someone on Facebook told me about this program called CORE. I hadn't heard of it and will go on a tour later this month. Contrary to the web description, it is primarily targeted to adults with developmental disabilities. They too don't have sign language support.

Another parent suggested this program called SOAAR, but it's not close by and costs $100 a day.

We are also going to visit a program at the Bob Rumball Centre and an arts program at L'Arche. 

Does anyone know of any gardening or farm programs in the Toronto area? CORE did have a farm program but it sounds like it's been put on the back burner. 

My son went with some workers and other youth to Windreach Farm for a few days this week. That gave me a chance to see Kelly Taylor again. She used to work with us in Family and Community Relations at Holland Bloorview but now manages the Windreach volunteer program. Windreach also has an adult day program, but it's way too far for us to do the commute.

While at Windreach, Ben slipped away from the group to return to this goat (above) who he was determined to feed.

Stay tuned.