A couple of  weeks ago I received an email from a friend of mine urging me to see RARE, a play created and directed by Judith Thompson featuring 9 young people living with Down syndrome. The play debuted at the Toronto Fringe Festival in 2012 and was brought back this January. Since then its run has been extended three times.

The production was a work of art. I was transfixed from the moment the nine performers walked in wearing white masks with Gabriel’s Oboe, Ennio Morricone’s iconic piece from the film The Mission, playing in the background. I wept watching the grace with which the actors presented themselves for all to see–in dance, in song, in poetry, in multiple languages. They were beautiful and gifted and raw.

RARE is framed by a number of themes including Hope, Love, Rage, and Fear; such universal emotions, felt equally by each individual performing. In their own words, the actors expressed what each emotion means to them, and it was eye opening to say the least. We may ask whether we really need a World Down Syndrome Day in this day and age, but after seeing RARE, I have no doubt we do.

“All we want is to be out there with you. So don’t be alarmed.” 

These were the words of Dylan in a song he wrote expressing the isolation and frustration he feels at never being able to quite fit in with others.

“I am not broken.” “I’m not a kid.” “Don’t tell me what to do.”

The struggle for independence was palpable as the audience gained insight into what it must be like to live life with a developmental disability.

“We are unique. We are rare.”

Each performer expressed the love their families had for them – how some parents had to fight to keep their children at home – and their greatest fear of all:

Losing their parents.

At the end of the play, it was clear by looking at the audience who had a child with Down syndrome. Their solemn silence and their teary eyes gave them away. I’m certain the same thoughts were running through all of our heads: chances are good our children will outlive us, but what kind of world are we leaving them to?

One where other kids bully them? One where roommates in their group homes steal their stuff? One where people call them names like “freak” or “retard”? One where they can’t pursue their dreams because schools refuse to accept them?

This is the world the actors have grown up in. And that has to change.

Their desires are simple. They want to be independent, fall in love, have children, have freedom, and be treated equally.

I feel honoured and humbled that these nine RARE performers– Krystal, Nathan, Nick, Dylan, Suzanne, Nada, Michael, James, and Sarah– opened themselves up to us in the way they did. It will help me build a better world for my daughter and understand those who may not be able to articulate their thoughts the way these actors have done.

At the end of the play, the actors received a standing ovation. I can’t think of any performance more deserving of one.

Happy New Year!

January 4, 2013
Greek New Year

Happy New Year! It’s been such a long time since I’ve been here, but I hope to get back to writing again in 2013. I have some new resources to share and am learning new things every day from my amazing girl.    On New Year’s Day we followed the Greek tradition of baking a New Year’s cake, or a [...]

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School Days

September 10, 2012

It’s been a while… we have been gearing up for quite a transition in our lives: the first day of Junior Kindergarten.  For 9 months we’ve been preparing with calls to the school, meetings with the principal and special education teacher, discussions as to whether Rachel should participate in the full program, and a couple [...]

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August 10, 2012

I had the opportunity to watch the film Indelible today. Wow! I was just blown away by the beauty, joy, and wisdom that emanate from this short piece.  Indelible features Dr. Surekha Ramachandran, the Chairperson for the Down Syndrome Federation of India and mother to a daughter with Down syndrome. The way she articulates the value of [...]

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Finding Ourselves: Favourite Children’s DVDs

July 27, 2012

When I first started watching movies with my husband, I found he had an interesting habit of looking for Greek names in the credits. I had a friend of Polish descent who did the same thing with Polish names.  I suppose as human beings we naturally seek out others like us; people we can relate to in one way or another. Now [...]

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Vacation from Down Syndrome

July 21, 2012

As I mentioned in a previous post, my husband was born and raised in Greece.  Every two years or so, we travel back to his birthplace to visit family and friends and experience the unique culture in which my husband spent his formative years.  Earlier this month, we were back again–swimming in the sea, feasting on Greek delicacies, [...]

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June 23, 2012

I finally had the opportunity to watch the film Girlfriend– and it was absolutely riveting. Evan Sneider gives an incredible performance as Evan, a young man looking for love. Amanda Plummer, Shannon Woodward, and Jackson Rathbone round out the cast as Evan’s devoted mother, his love interest Candy, and Candy’s jealous ex-boyfriend.  When a tragic event occurs in Evan’s life, he must [...]

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Canadian Down Syndrome Society Conference – Part 2

June 15, 2012

There were so many sessions of interest which made it very difficult to decide what to attend.  One speaker I was keen to see was Sara Bingham who presented “Enhancing Language and Lessening Frustration”.   Sara’s book The Baby Signing Book has been sitting in our kitchen for the past three years and is an oft-consulted resource in our home.  As [...]

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Canadian Down Syndrome Society Conference 2012 – Part 1

June 9, 2012

In the middle of all the illness our family has experienced this past month, the Canadian Down Syndrome Society Conference was held in Toronto.  I had never been to a Down Syndrome conference before, so I was keen to see what it was all about. Unfortunately because Rachel was ill, I missed seeing Marlee Matlin, the [...]

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Home Sweet Home

June 8, 2012

Just a little update!  We finally got out of hospital last Friday.  They decided to replace the Y2K compliant monitor with a newer, more sensitive one that could track her oxygen better.  When on both the new and older monitor, the new one was consistently higher.  What a relief!  Daddy stayed up all night the last night she was [...]

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