Friday, August 29, 2008

I Have a Voice

One of my favourite things to do is sit on the deck and read a good book. I can't get enough of books, sometimes juggling two or three at a time. A murder mystery is in my car (it's unthinkable to sit in a waiting room without the latest P.D. James tome to distract me from an impending dreaded root canal); my old standby, Pride and Prejudice, graces my end table in the bedroom, and dozens more are scattered throughout various rooms in our house.

Books have always been a comforting presence in my life, as well as a pleasurable way to pass the time. Oh, let's face it, some women experience the 'thrill of the hunt' when shopping for shoes, or bling. I get the same tingles all over my body when I enter a bookstore or a library.

Thankfully, I've been blessed with opportunities to sit down with other book addicts and spend countless hours mulling over the good, the bad, and the just plain ugly in every great opus.

Imagine my excitement, then, when I read that a book club was developed exclusively for the intellectually disabled? According to Newsday, "five years ago, with the help of like-minded advocates and the Port Washington Public Library, (a mother of a Down syndrome man) formed Books for Dessert, a book club - thought to be the only one of its kind on Long Island - for adults with intellectual disabilities."

"People have always assumed that people like Jamie don't really have opinions on anything remotely complex," said his mother, Nancy Comer. "They're just expected to work and be happy."

Another book club was created in Ohio, called the Next Chapter Book Club. It was "founded in 2002 at Ohio State University's Nisonger Center and now has more than 100 chapters across the country (the U.S.)," said program director Tom Fish."

Hmmm, that's all well and good for those who are lucky enough to reside in areas close to these book clubs, but what about those people who live in the boonies, or for that matter, don't happen to live in the United States?

The more I read about this wonderful opportunity, the more I itched to create the same thing, here, in Canada. I reflected on how book clubs allow the participants to create a social network, and as Fish said, "even though people with intellectual disabilities are living with greater frequency in their community, that doesn't mean they're part of the community."

After Googling everything under the sun, I finally struck gold. "Seek and ye shall find," as my mother drilled into us as children. The Down Syndrome Research Foundation (DSRF) recently announced they're bringing the Next Chapter Book Club to Canada, albeit British Columbia. However, after checking out the contact list on the Chapter Book Club site, I found a contact name in Erie County, Ontario. Eureka!

I liked the site. It's warm, friendly, and doesn't talk down to the reader. And I liked the fact that "unlike any other book club, the Next Chapter Book Club provides adolescents and adults with intellectual disabilities the opportunity to read and learn to read, talk about books, and make friends in a fun, community setting. Next Chapter Book Clubs meet weekly in local bookstores and cafes to read and discuss books of their choosing. NCBC members range from those who read well to those who do not read at all."

If your local town or city doesn't have a book club, why not start up your own club? Adapted classics are available at every bookstore, or can be purchased online. As one member said, "I like coming here because I like to read history...and I like this group. I'm alive, and I feel great being here."

It doesn't have to be a book club, of course. How about an art club, or a crafts club? The list is endless. Let's just open the gates of our communities, and invite the intellectually disabled in. Give them a place where their voices can be heard. Because they have a lot to say. We're just not listening.

Friday, August 22, 2008

The Power of Words

Yesterday I grabbed our local paper and headed out to the backyard. Splashed across the front page was a report of the discovery of a giant hogweed in our area. I held my breath as I read of the potential harm it can inflict on those who come in contact with it.

Apparently, "severe burns can usually result in blistering and painful dermatitis. Blisters can develop into purplish or blackened scars, sometimes up to 48 hours after exposure. In some cases...eye contact can lead to temporary or possibly permanent blindness." Gulp...

We are cautioned to wear protective gear when gardening. It's an invasive weed, taking no prisoners, and will take over your garden if you're not vigilant. Uproot it at the first sign of its presence.

I dropped the paper and spent the next couple of hours in an extensive reconnaissance tour of our garden. Who knows, this giant hogweed could be lurking in the shadows, supposedly minding its own business. But, a la Day of the Triffids, it could be plotting a hostile takeover of our lovely garden. Visions of mutant hogweeds systematically cutting a swath through our community danced in my head.

Weeds are stealthy, sometimes taking on the look of the surrounding flora. I know better, though. They may masquerade as another member of the flower family, but they are poisonous plants, slowly choking the life out of a thriving garden. Just as a gardener will create diversity in a garden, in order to encourage a flourishing plant community, so she will uproot noxious uninvited guests.

Maybe I just need to understand where the weeds are coming from. After all, it's possible they don't mean any harm. In fact, it's possible my sense of humour needs a drastic retuning - a complete overhaul, perhaps? - and if I can see the funny side of their presence in my garden, we'll all get along much better. The weeds will take pity on its flowering neighbours, and therefore decide to play fair.

No, on second thought, even if they're unaware of the damage they're inflicting on the community, we know better. It's best to uproot them, and in their place plant something that will only have a positive effect on the environment.

Like the damage to a child's self-esteem when he hears the r-word repeatedly used against him. I read in a blog that "research featured in Harvard Mental Health Letter and published in The American Journal of Psychiatry looked at the damage that hostile words, and or yelling, can have on a child. They found "words are weapons that can cause lasting wounds..."

So it behooves us to protect our children from the negative, hostile elements in their lives, and plant them in a positive, loving, and supportive environment.

"Words have great power to heal or hurt." The Special Olympics reminds us "our choice of language frames how we think about others. It is time to respect and value people with intellectual disabilities. It is time to accept and welcome them as our friends and neighbours. Change the conversation...Stop using the r-word."

Instead, plant a different word in the community: Respect.

Friday, August 15, 2008

Don't Fence Me In

My neighbour just put up a fence. I'm a little sorry to see it, though. Every morning, I would sit at the kitchen table, coffee cup in hand, while deer, wild turkeys, and other wildlife strolled, unimpeded, through the neighbourhood. For the first time in years, the binoculars and camera weren't gathering dust on a closet shelf.

But I need to be realistic: cattle will soon share this land, and I see the value of keeping them safely penned in, while keeping out unwanted visitors, such as our overly inquisitive Golden Retriever. The cattle will have plenty of room to roam, and I won't have to spend many nail-biting hours fretting over the garden we've been carefully cultivating all summer.

Besides, our neighbour went to a lot of trouble to make the fence aesthetically pleasing, not just functional.

But what about the fences we erect to keep people effectively locked out of our communities? There are plenty of subtle, and not so subtle, ways of keeping 'unwanted visitors' out of the mainstream pool. Like perpetuating negative stereotypes of groups of people, for example.

I was reading an entry from Barriers, Bridges and Books, an excellent blog on disability advocacy and cultural change. For the last couple of weeks, the author has been discussing the importance of the disability community coming together as a whole, with one voice, in response to a "movie coming out this August called Tropic Thunder that bandies the R-word all over the place and describes the experience of having an intellectual disability as being "moronic, stupid, dumb and imbecilic.""

We've come a long way, baby, but in 2008, a big-budget comedy is still attempting to keep the intellectually disabled 'in their place'.

But what, exactly, is that place?

As the author pointed out, "An actor does NOT have to accept stupidity, being a total imbecile, etc. from themselves to portray someone with a cognitive disability. This is NOT what it is like to have a disability."

Someone once said, "The walls we build around us to keep out the sadness also keep out the joy." But isn't there a happy medium? Don't we need boundaries, both within ourselves as well as in society?

Boundaries are necessary, but they shouldn't be used to fence people in. Particularly when the people are being treated like cattle and systematically herded into a no-man's land of ridicule, indifference, and social isolation.


Saturday, August 9, 2008

Stand Tall

Neil MacDonald (see Neil's poem, Voices of War, in 'A Place for Poets')


My husband's voice rang out in the forest, and everyone scattered to the four winds. The giant tree creaked and groaned in protest. The tree was dead, but perversely, I wanted to step forward and take the weight of it in my arms. Catch it before it could hit the ground and disappear forever. It was a fine old tree, and I didn't want to say goodbye to it.

I closed my eyes and turned away, tensed for a resounding crash to split the air around us. Instead, silence filled the space where we waited.

A crowd of us gathered around the tree. The top half wasn't lying on the ground. It had opted, instead, to take its place alongside its original home. It was as if someone had snapped the tree in half, and like me, couldn't bear to part them.

Like an old married couple, the two halves of the tree stand almost knitted together. One rooted in its surroundings; the other one a symbol of perseverance and steadfastness.

Against all odds - including storms that have swept away larger and mightier trees - this tree simply would not acknowledge defeat.

Now that the long-awaited Beijing 2008 Olympic Games are underway, I'm reminded of what it takes to stand tall in the face of storms. To know who you are, stand up for your beliefs, and persevere even when the odds are decidedly against you.

As I read about four Special Olympics athletes from East Asia who were selected as Olympic torchbearers, the true story about a Special Olympics athlete's road to gold came to mind.

In "Spirit, Courage & Resolve, A Special Olympics Athlete's Road To Gold", Tom Lambke wrote about his son's journey from his birth in 1981 - the moment he "knew that our beautiful boy had Down syndrome and that our lives were about to change forever" - to the podium at the 2003 International Special Olympics in Dublin, Ireland.

Throughout Bryan's life, friends and family have seen only ability in his disability. Standing together, they look only to the future, accept Bryan for who he is, and "work with him lovingly."

I visit my twin trees, from time to time. Just like Bryan Lambke, his peers, and all the people who stand solidly beside them, they are symbols of standing tall in the face of life's challenges, and persevering even when storms threaten to take them down.

When the greater community stands shoulder-to-shoulder, with one unified voice, a seismic shift in the collective consciousness will occur, changing forever how people view those who've been labeled 'different'.

For information on Down syndrome, consider reading Bryan and Tom Lambke's "I Just Am: A Story of Down Syndrome Awareness and Tolerance."

Friday, August 1, 2008

Dare to Dream

Robert Hajjar, Founder of, and Michael 'Pinball' Clemons, CFL Legend and Toronto Argonauts CEO.

"All of our dreams can come true if we have the courage to pursue them." Walt Disney

"All the world's a stage." William Shakespeare

When I was four or five years old, I would escape to the sanctuary of my bedroom to sing my heart out. I would stand before the large mirror that hung over my bureau, spread my arms wide, and take a deep breath.

The stage was set, my audience silent as a tomb, waiting with bated breath for me to enter the stage. I hung back in the wings, tentative at first, and just when the tension was almost too much to bear, I'd open my mouth and sing for all the world to hear.

It was always the same. I didn't need props, or costumes, or even other people. My dream to sing and dance would play out, and I was both the audience and the player.

At the end of every performance, the audience would rise in unison, and thundering applause would fill the room. It was a spontaneous, enthusiastic response to my evident gift for life on the stage, and I knew, for a brief moment, what it was to live out my dreams.

The adrenaline rush of placing my gifts and passions in the bowl of the world's hands was extraordinary.

Like most childhood dreams, it didn't last long. After years of playing to packed houses, I eventually grew bored with it. It was a silly game, pointless, and anyway, I had better things to do with my time, I told myself.

The dream was buried, along with many other dreams and wishes, sealed away in a time capsule deep within me.

As I was driving back from a friend's home the other day, I hummed along to a song from around that time. Mama Cass crooned "Dream a Little Dream of Me." It's a romantic song, full of longing, but I couldn't help but think the title applies to most of us.

As children, we're certain that our dreams can take us anywhere. There are no physical limits on our flights of fancy, and sometimes they travel where we dare not go.

But somewhere along the line, we take our larger-than-life dreams and whittle them down to something more bite size. Our dream to perform on the stage becomes a talent for telling a darned good joke at a cocktail party. Our stripped-down dreams are tucked somewhere far away, into a distant place where we can no longer hear their siren songs. The delirious feelings of 'soaring on wings of eagles', climbing the highest peaks, or exploring the deepest chasms, are deemed unrealistic.

We dream a little dream of me. And then there are those people who use their dreams as stepping-stones on paths to rich and rewarding lives. Raymond Hu, Bernadette Resha, and Michael Johnson. Sujeet Desai and Chris Burke, to name a few. Artists, musicians, and actors, who have placed no limits on their creativity, gifts and passions, because they aren't content to stand in the wings. What they accomplished took courage, readiness, willingness, and a deep desire to share their gifts with the rest of us.

They have something else in common: they all have Down syndrome. Dare to dream, they tell us with their gifts.

If I take up their clarion call, and give permission to myself to step out of the wings and into the center of the stage, why can't I do the same for others?

While I'm in the process of encouraging myself to dream big, I can step away from the center of the stage and applaud my fellow players.

If you're interested in viewing a video of Down syndrome children and adults who have dared to dream big, click here.
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