Friday, September 16, 2016

Welcome to the land of the red hat

I am often asked to describe the experience
of raising a child with a disability—
to try to help people who have not shared that
unique experience to understand it,
to imagine how it would feel. It’s like this…

In the "Notes" at the back of my book Tell Them It Was Mozart, I've included Emily Perl Kingsley's essay "Welcome to Holland." In it, she compares learning that your child has a disability to having your plane to Italy land in Holland instead.

It's not intended as my book's final word, but as a reference to give readers context for the erasure poems (like "We come to land" above) that bookend my collection and introduce each section.

A few people have told me "Welcome to Holland" is their favourite part of my book. Um, you know it's one of the only parts I didn't actually write, right? (Oh Lord, keep me humble.)

I'm surprised how many people say "Welcome to Holland" is new to them.

If you Google "Holland" and "disability," you'll find tons of blogs and groups named after Kingsley's essay.

Alicia J. Clarke writes on her blog Lost in Holland

Part of the indoctrination into parenting a child with special needs includes a therapist, social worker, health professional, sweet friend or neighbor ceremonially handing you the classic essay Welcome To Holland.

I was first welcomed to "Holland" by the final scene of Kingsley's 1987 movie Kids Like These, based on her own experience of raising her son Jason, who has Down Syndrome (and starred on Sesame Street). 

The first time I heard actress Tyne Daly, the mother in the film, recite "Welcome to Holland," I wept. I loved the message of accepting each person and relationship for the unique gifts they offer.

The second time I read it years later, I thought, "Oh yes, that was lovely." The third, fourth, and fifth times, I sighed.

But by the 37th time someone told me I needed to love it because it described my life perfectly, I felt Weird Al rising up inside me. 

By way of contrast, here's Weird Al glowing forth below me. Acrophobia, anyone? (Photo by Anthony Mark Photography)

It's not that I've lost sight of what attracted me to the essay in the first place. But like the music of Disney's Frozen, repetition breeds the need to play. (Many artists consider it a badge of honour to be parodied by Weird Al.)

No one disputes that Idina Menzel's voice is heavenly. But once you've heard "Let it go" every hour for a week, you start hearing alternate lyrics: let it flow, make it so. The song has become part of this decade's consciousness; it's been used to describe mother stress and real estate.

Do you want to have an ear worm? ("Floral Elsa" art by my daughter G)

"Welcome to Holland" has "Let it go"s notoriety in the disability community, and parents respond in a variety of ways:

Just a Lil Blog's meme page

Some find Kingsley's story too Pollyanna-ish, such as this one: Welcome to Beirut.

Others see it as open to expansion (like Jesus's parables). On Lost in Holland, Clarke points out that a quarter of The Netherlands is below sea level with 1,860 miles of outer-sea dykes and 6,200 miles of river dykes and canal walls; if the pumping stations failed, the country would be under three feet of water.
 So maybe Kingsley unwittingly nailed it after all. Holland has so many things to appreciate, but it has to work tirelessly against that wall of water threatening to drown it.  In this push-pull, ying-yang, love-hate relationship with that which would swallow it whole, Holland has somehow managed to (no pun intended) stay afloat. Holland is a story of beauty, culture, and success in the face of constant, unrelenting stress. It has not succumbed to ruin. It has found a way to thrive... just like those who find themselves reluctant "tourists turned locals," losing and finding themselves again and again in a land called Holland. A land that overwhelms them with beauty, love, and challenge. A land they someday, somehow, will learn to call home.   

One of my favourite retellings of the Italy/Holland analogy is from Autism, or Something Like it:

We don't wind up in Holland. Being in Holland would imply that we were not involved in the final destination.  But we were. Special needs parents and non-special needs parents alike. We all chose our destination: Parenthood.

We CHOSE to go there.

You see, parenting is a choice. And it's one that is riddled with uncertainty, responsibility and- sometimes- heartache. But it is a journey we chose to embark upon.

None of knew what kind of kids we'd get. None of us can say for certain that our kids will do a, b, or c.  Hell, none of us can know for certain that they won't drown in a pool.
Or lose their legs in a crash.
Or spend a year or more in the hospital, recovering from a brain injury.

None of us know anything about the final destination. We are all flying blind.

So, instead of Holland, I posit this: We all wound up in Italy.

When I was pregnant, I blew up "Italy" in my mind (I was going to go about my regular life, just with a deeper glow on my face and a cooing infant strapped to my back), and I forgot that Italy has 3 am sirens too. Some who visit Italy spend their stay in bed with a head cold. Some find their favourite landmark covered in scaffolding or closed for cleaning. 

Italy even has crooked towers, aka "wonders."

I don't want to give away too much, but this is one of the things I'm driving at in my erasures. While I love the picture of parents of children with disabilities speaking the same language and sharing the camaraderie of a land of our own, I'm no longer comfortable with the idea of being isolated and confined to a separate country from the rest of (struggling, imperfect) humanity.

And the pain of that
will never, ever, ever, ever
go away...
because the loss of that dream
is a very very significant loss.
But ... if you spend your life
mourning the fact that you didn’t get
 to Italy, you may never be
free to enjoy the very special,
the very lovely things
... about Holland.
Since these erasure poems of "Welcome to Holland" introduce each section, even though they appear silly, I mean for them to be taken seriously. They probably require the most interpretive work of any of the poems in the book. 

The way to experience the erasures is to read the dark text as my poem, and the whole text as the original I'm responding to - the larger context within which I'm locating my own story. Read one, read the other, read one, read the other, think about what they say in conversation.

The fact that so many parents and writers have stood within - and jumped off from - the Holland/Italy metaphor is a testament to its simple beauty. I don't claim that my "We come to land" poems will have the staying power of Kingsley's piece, or that suddenly there will be blogs and support groups called "The red hat" popping up all over the disability community.

But I hope you read them for what they are: my story (affirming/challenging/playing) within the wider disability community's story.