Friday, February 24, 2012

When Will They Come for Me?

Disability is the only minority that any of us can join in an instant.  And until we build a world that includes everyone, we're all going to miss out.                                                              --Lawrence Carter Long in the documentary Monica and David

This week Time magazine featured an article on Down syndrome concerning the ethical debate that is raging over advances in prenatal testing.  A new blood test from Sequenom, a biotech company based in San Diego, makes the prenatal discovery of Down syndrome a simple process which carries with it the ability to reveal the extra chromosome as early as 10 weeks gestation with nearly 100% accuracy. Similar testing will likely soon be available for other chromosomal deviations.

It is true, that prenatal testing as a means of preparing for the future can be a good thing. Never has there been a world so prepared for a child with Down syndrome.  Early intervention, trained therapists, and myriad resources in the forms of books, blogs, and support groups all are at our fingertips.  Projects like I Have a Voice, cartoons like Punky, and events like the Buddy Walk serve to remind the public that human beings are not made from cookie cutters  For each of us then as individuals, the future would seem to be a bright and exciting place.

But I fear that the main purpose of this early and efficient test is aimed not to prepare for a future of diversity, but to destroy it.

And I wish that I could reach out to everyone who receives the news of that extra chromosome and say...I know.  I know how scared you are.  I know that you wouldn't choose this now.

But I also know that 99% of families love their children with Down syndrome.

I know that 88% of siblings feel that they are better people because of having a sibling with Down syndrome.

I know that 99% of people who have Down syndrome themselves are happy with their lives.*

And I know that there are waiting lists of loving families who are hoping to be able to adopt a child with Down syndrome.

A prenatal test can't tell you that.  A textbook analysis of that extra chromosome is only a biological description.  It can't tell you the personality, the joy, and the unconditional love that seems to come as part of the package.  It also can't predict the fierce love that will overtake you, the strength that will become you, the great and wonderful family of diversity that will join you.

A prenatal diagnosis could never have revealed to me the joy with which Wade greets each day.  It couldn't have whispered the happiness of hearing the words, "Good morning, Mama, good morning!"  It could never have communicated the pure pleasure of the enthusiastic thankgivings that pour forth every day from Wade, no matter whether we have given him a cookie or a chore.  It couldn't have pictured how his eyes curve into happy half-moons when he laughs or how the warmth of his hug makes every homecoming heaven even though I've only been away for 15 minutes.  And it could never have hinted of the aching wistfulness I often feel--not for the life we lived without Down syndrome, but for the life that Wade lives with it.

It is a life lived with a generosity of spirit that I wish could become my own.  For his is a vision that includes a friend behind every door, beauty in a crumpled leaf, and gratitude for a crust of bread.

Naive, you may say.  He just doesn't know enough to know better.

Maybe so, maybe so.

But it is through his naivety that I have been shown the pure goodness of unadulterated love.  And it is because of this innocent example that I am learning what it is to be truly human, truly imperfect, and truly loved.

It is a universal message that we all yearn to hear.

And so I ask you to consider the future--the future of us all--when I say, "Please, please don't kill the messengers."

First they came for the communists,
and I didn't speak out because I was not a communist.
Then they came for the trade unionists,
and I didn't speak out because I was not a trade unionist.
Then they came for the Jews,
and I didn't speak out because I was not a Jew.
Then they came for me,
and there was no one left to speak out for me.
                                                                --Martin Niemoller

 *Statistics based on research by Dr. Brian Skotko published in the American Journal of Medical Genetics

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