Tuesday, August 4, 2015

At this camp 'disability didn't matter'

By Jessica Geboers

“Ooh / There is a camp I know/ and it lies on the Rideau / and they call it Merrywood / and you know, they really should.”

These are the opening lines to the Merrywood Song, the anthem of my favourite place on earth­­: Merrywood Easter Seals Camp in Perth, Ontario, for children and youth with disabilities. However, Merrywood was always much more than just a summer camp to me. From the first five days I spend there in the summer of 1997—my first time alone after two summers of family camp at the former Northwood with my parents—this was a place of accessibly, inclusion, friendship and fun. And as cheesy as it may sound, the friends and memories made there really do last a lifetime.

I’m still in touch with Erin, the counsellor who met me at my car on my first day at Merrywood. Not only did she look out for me that session and every session we’ve spent there since, but we’ve stayed in touch over the years through letters and Christmas cards. Nowadays, Facebook helps keep us up to date on the happenings in each other’s lives.

I think it was the summer of 2002 when I didn’t get into Merrywood but instead was offered a place at Camp Lakewood. I was in utter despair over not getting into Merrywood—my 12-year-old life was over as I knew it. But I was happy to be going to camp somewhere. And, as it turned out, this was one of the best things to ever go wrong in my life.

At Lakewood, I met my best friends in the world. Not long after arriving, I met Hanako. She was in the bed next to mine and our first interaction involved her helping me to disentangle my walker from my wheelchair. I’m pretty sure she thought I was quite daft for getting into such a predicament, but it was nice of her to help.

The previous year, Merrywood had acquired a collection of untippable and unsinkable sailboats that could be maneuvered easily from a comfortable seat with a joy stick and single rope operating the sail. Sailing quickly became my favourite activity, pushing swimming to second place. I love the freedom and exhilarating speed when I catch the wind just right.

Lakewood also had these sailboats, and pretty good wind conditions as well. When Hanako and I arrived at the beach for sailing on the second day of camp, it was quickly established that, due to short staffing, we would be sent in a boat together as we were both experienced­ sailors. Darren, an attractive Irish sailing instructor, whom I immediately had a huge crush on to the point of being speechless, had trained Hanako the summer before.

So off we went. The thing about spending two hours in a boat, with little else to do but sail and talk, is that you either come back friends or foes. Luckily for us, we discovered that we had a fair bit in common: in addition to a love for sailing, we had similar tastes in music and books, came from Dutch families and were the oldest of three children. We also had a similar form of cerebral palsy so shared a life view in this respect. We returned with the beginnings of a beautiful friendship. From that point on, Hanako and I did everything together, sailing as often as we could. We were even so bold as to ask Darren to rig an additional boat for us when there weren’t enough spaces.

“Hang” was a two-hour period of down-time we spent in or around the cabins every afternoon. Hanako and I would sit side-by-side on my bed or in our wheelchairs, as we quickly discovered that there was just enough space between our two beds to fit both chairs beside each other. We listened to my countless burnt CDs while singing along shamelessly.

Lakewood was not a bad place. The people and the sailing were great. The cabins had yet to be updated but the six, small, wooden buildings fostered a sense of community and tradition. The only downside was that dead fish from Lake Erie often washed up on the beach, giving the entire camp an unfortunate smell.

Despite my love for Merrywood, I followed Hanako back to Lakewood the next summer. She’d never been to another Easter Seals Camp and, like me, dislikes change. Hating to waste a day, she convinced her father to drop her off at 9 a.m. on arrival day and, after some badgering from me, my family dropped me off soon after.

If I remember correctly, after the required rounds of handing in the money our parents had given us to purchase a new Easter Seals T-shirt, checking in with nurses and assuring the waterfront staff that we were still crazy about sailing, we spent the majority of the morning messing around in arts and crafts while meeting new staff and catching up with those returning.

It was later that afternoon while lounging on my bed with Hanako that we met Katie, who would quickly become our third Musketeer and another of my best friends. When she came in I could tell right away that Katie was another highly independent camper like Hanako and I. Her cerebral palsy wasn’t even noticeable to me at first.

It was quite out of character for me then, and still is now, to make the first move to initiate a friendship, but Katie seemed cool and I felt for her as she nervously sat down next to another cabin mate who was much more severely disabled. She looked uncomfortable so I took a chance and said hi, striking up a conversation.

I later found out that this was Katie’s first time at camp, although her twin brother Kasey had come the year before. She was new to camp life and to being around kids with such a wide spectrum of disabilities. She adjusted quickly though, asking Hanako and I questions whenever coming across something she wasn't familiar with.

After Katie and I hit it off, Hanako asked if I was ditching her for Katie. I assured her that I was doing no such thing; I simply thought she could use a friend and the three of us could hang out together, which we did.

We did everything together, except sailing which Katie found boring unless it involved a water war against her brother. Three can be an awkward number (and I won’t say there weren’t disputes over the years) but we usually sorted it out. Not big on sports in general, we often found ourselves together at the pool diving for rings (although Katie floats a little too well for such activities) having sparkle and paint fights in arts and crafts or doing something (often involving food) in Life Skills.

Hanako, Katie and I were an odd trio but were drawn together by our shared independence and friendship. I saw myself as the glue of our group. In addition to the things I have in common with Hanako, Katie appeals to a lighter and more girlie side of my personality. At 14, and even now to a point, Hanako never cared much about clothes, make-up or hair. On the flipside, Katie, to our slight disappointment, has never had much interest in picking up a Harry Potter book or watching A Walk to Remember on repeat.

Lakewood was closed after that summer and after some fantastic times there I was sad to see it go.

Once home, Katie and I began speaking on the phone almost daily (a habit that would continue until we went to college and upgraded to Skype) and Hanako invited me to stay with her for a couple of weeks in Kitchener-Waterloo. From then on I would visit Hanako after camp each summer and almost every school holiday during the year. Our parents used to take turns driving me back and forth between Bowmanville and Kitchener-Waterloo and when I look back, those two-hour drives were some of my favourite times, often spent singing aloud to our favourite bands (like Switchfoot, Relient K and Coldplay). Although I appreciate the independence it provides, the train ride alone is just not the same.

Off to Merrywood we went the next summer where I proudly introduced them to my favourite place and everyone I knew. Hanako and Katie were happy to admit that this was a nicer place with new, air-conditioned cabin buildings and water on three sides (free from the stench of dead fish). We also enjoyed some additional activities: Hanako went white water rafting on the Ottawa River, while the three of us enjoyed beach day and camping in a tent overnight together (Katie, who wasn’t keen on boats at the time, braved the canoes like a champ to partake in these two activities with us).

This continued for the rest of our years at camp, the three of us usually only separating when Hanako and I went sailing. Hanako and I took the summer of 2009 off because we knew we might want to work at Merrywood and were required to take at least one year away to create a bit of separation between camper and staff.

I worked at Merrywood as a cabin counsellor in the summer 2010. It was my first real job and a lot harder than I expected. I was always tired, but it was still the best job in the world. Hanako came for a session to work as a peer support counsellor. Essentially she was an ex-camper hired to act as a role model for campers who might wonder what life is like with a disability as they get older. It was so much fun to be there together again.

Then life and school got in the way, so I had to take four years off from camp.

I missed it very much and was ecstatic about going back this summer to work for a session as a peer support. It was easier this time as I’m older and know better what to expect. Although I can’t help much with the more physical aspects of the job, such as lifting, I love hanging out with the campers and helping them to enjoy Merrywood as I did, while encouraging them, as I have learned from experience, to be the best they can be.

It’s been suggested to me recently that Easter Seals camp does more harm than good by fostering the idea that those with disabilities should be segregated from their able-bodied peers. I however, disagree. As I’ve written before, I think that mingling between abled and disabled people is important for acceptance and understanding between both parties. But that doesn’t mean that it’s not nice, let alone helpful, for children and youth to spend time with others with shared life experiences—even if it’s only for 10 days a year­­—in a place so accessible it could be argued that disability doesn’t matter.

Camp was the only place that I can say this was undoubtedly true.


Friday, July 31, 2015

Starting JK? It's a breeze, unless your kid has special needs

By Stephanie Ly

Our daughter Pepper will turn four this year, and though she's not your average four-year-old, she'll start kindergarten in the fall. 

When Pepper's older brother entered school two years ago I was nowhere near as nervous as I am now. But then Pepper is a special-needs child. And these last few months have been a traumatic roller-coaster for me.

The Ontario Ministry of Education lays out specific guidelines for inclusion, diversity and rights for all children to attend school regardless of ability, social or economic background. You may recall hundreds of parents converging to protest the Ministry’s “new” sex-ed curriculum which provides context for children of same-sex couples as well as introducing the concept of consent. 

My daughter will likely never be able to express consent or lack of consent. She may not be able to scream, run, or fend off an attacker. To these parents I say: How do you think this makes me feel, that you don’t think this piece of education is important? No, I certainly don’t trust that you are going to teach this to your children at home. I simply do not. But I digress.

Most parents take for granted that once they've registered their child for junior kindergarten and met the teacher, the only stumbling block is their own anxiety. When my son entered the school system, it was seamless. Effortless. 

Unfortunately, enrolling our daughter at the same school has been gruelling and heart-wrenching. There have been numerous meetings, appointments, doctors' notes and days off. Many hot tears later, we’re still unsure what September will bring for our little girl. 

For starters, we await the arrival of her wheelchair, which she'll need in order to start her school year. Her educational support worker hasn't yet been chosen, and most egregious, she was rejected from the before-and-after school program at her school because of her special needs. Wait, what? Inclusive? Not so, it seems. As a result, we find ourselves in a state of limbo for her September start. Tears of uncertainty flow regularly for me, and the anxiety is relentless.

So what of the Ministry’s inclusion mission? Does it include children like my daughter, who has physical and medical needs in addition to her cognitive delay?

All of the equipment required in the classroom (minus the wheelchair, which is our responsibility) has been set in place, we are told. We have become acquainted with her special education caseworker, kindergarten teacher, principal, school board special education coordinator, physical medical coordinator, Community Care Access coordinator and the like. 

Pepper's IEP is being worked on according to her abilities and the path we've carved for her with the support of her daycare educators. 

Yet it's August and we still don’t have a before-and-after school plan for her, something essential to our ability to work (which for me includes an hour's commute each way).

And the rescue medication recommended for our dear daughter when she has a seizure, and taken under the tongue, has been rejected by the board as a safety issue for the person administering it. A nasal spray, which we need to be trained on, will be used instead. 

What happens now? Advocacy, of course. My husband and I don our superhero capes and get our fight on. We fight for the right for our daughter to attend school with your child.

We hope and pray that she is safe, and included, and treated like an equal. We wait for the phone calls informing us of the seizures, of the accidents, of the loss of resources. We wait to see what impact a possible teacher’s strike might have on special-needs programming. And we get ready to fight.

See you in September.

Follow Stephanie on her blog at Pepperlepsy.

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.