World Down Syndrome Day – RARE

March 21, 2013

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.

Related Posts Plugin for WordPress, Blogger...

Leave a Comment

Previous post: