“My name is Liz and I have Down syndrome.”

She strode onto the stage without notes, without preparation, and seemingly without a care.

A hundred pairs of eyes were anticipating her spoken word poetry performance.

A recipe for disaster.

A disaster that I had tried to prevent from the moment she was born.

It was the scene of my undoing.

                                                                                                            ***

I spent many a waking hour after my daughter Liz was born searching for a cure for Down syndrome. Someone had slipped a magazine article into my hands describing a medical scientist’s mega-vitamin remedy for Down syndrome. Apparently, it would isolate each extra chromosome, and return her cells to normal functioning. Made sense to me. Made hope for me.

I tracked the scientist’s whereabouts across the US to Glasgow and finally to Stockholm. Which is where his trail evaporated. Along with my faith in his scientific credentials.

I returned to my search for other miracles from time to time but with declining enthusiasm. Something else had caught my fancy – the concept of normalization. It suggested that one way to deal with the differences associated with a disability was to tear down the literal and figurative walls of segregation and to normalize living environments.

I became a zealot for anything that would help Liz fit in. That included regular classrooms in regular schools and fashion label clothing, which I never considered for my other children, anything that would push her disability far into the background. Conformity became my parenting mantra.

You can imagine my dismay when one of the first things Liz did when she graduated from a regular high school was to enroll in a segregated community college program. I now understand that she was tired of my ‘sink or swim’ agenda and simply wanted to be with her friends.

                                                                                                              ***

Liz began her performance by snapping her fingers to a steady internal beat. Which cued her accompanist, the jazz guitarist who was sitting behind her. The crowd was with her, cheering in appreciation. She was beaming.

Her confidence shook me open.

And exposed my own lack of confidence. Not in her but in her ability to live up to my idea of her.

                                                                                                             ***

I suppose some good can come from searching for a cure. But not if you miss the true miracle, the miracle of Being. Being thrilled by tiny perfect beauty. Being at peace with what you will never understand.

Some good can also come from trying to fit in. But not if it distracts a dad from the blossoming of his daughter’s character.

The scene of my undoing led to this insight: if it ain’t broke don’t fix it. Liz never needed fixing. Her difference simply needed a home. My job as a father was to help her stand out.

Fortunately, Liz’s confidence grew in spite of my attempts at cure and conformity. It would have grown more surely if it had been a two-way street.

Liz’s time has come. And she’s not alone. December 3rd, the International Day of Disabled Persons is a good time to recognize that disability pride and talent is bursting out all over. After the stages of ‘cure’ and ‘conformity’ comes the next stage of the disability movement which I describe as one of ‘CONFIDENCE.’ If you look around you will see that folks with Down syndrome are playwrights, fashion designers, tv and movie stars, teachers, lobbyists, artists, hockey coaches, politicians, comedians, entrepreneurs and of course spoken word poets. They don’t see themselves in need of fixing. They are embracing all aspects of their identity and are creating their lives, with or without us. And it couldn’t come at a more critical time. The world could use more people who are enlarged and not threatened by difference.

Liz’s explanation of her Down syndrome to the audience that night helped me to realize that there is a world of difference between sameness and acceptance.

She said that it just takes her a little longer to understand some things.

She could have added, but not nearly as long as her Dad.

EH!

All these walls around me – where can I go to be free? (Liz Etmanski)

Musical selection for this post is ‘Evolutionary Walk’ by Spectra. Check out the rest of his work here and do support his music. He’s working on his eighth album and he’s still in his teens!

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One Comment

  1. William Azaroff

    I love this, Al! This sums it all up: “The scene of my undoing led to this insight: if it ain’t broke don’t fix it. Liz never needed fixing. Her difference simply needed a home.”

    Thanks for sharing this, and thanks too for the links to Spectra’s music. So appreciated!

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