In retrospect, wish I had spoken more about disability
history—the importance of teaching kids with disabilities about their place in
the continuum of progress, imparting them with a sense of pride and justice. The big picture, to me, is what's most
inspiring.
But at the Families of Spinal Muscular Atrophy conference, parents
seem so desperate for solutions, for coping strategies. Understandable, to be sure. Yet something is lost if you don't see SMA as
part of the normal variety/diversity of human life.
Maybe next time…
Anyway, here are the remarks I prepared for my two-minute
introduction. Didn't get to use my cheat
sheet, though, because there was no convenient place to prop my paper! So I winged it.
This is what I would've said–
– –
I'm delighted to be
here today, and delighted you're all here, too.
What we're going to talk about is very important to me, very close to my
heart.
It's nice, too, that in
this crowd I don't have to define "spinal muscular atrophy." You all know what it is. You probably know the statistics and
understand the science better than I do!
But my message may
surprise you. You see, I don't want to
be an inspiration. People keep telling me I'm inspirational, but that's never
been my intention. I've always just sort
of lived my life the best I could with the resources I had.
I'm a married Harvard
graduate, father of 2, freelance journalist, NPR commentator and, now, book
author. I am also, as my late friend Harriet McBryde Johnson–who also had
SMA–put it, "in the first generation to survive to such
decrepitude."
Not until I was in my
40s did I begin to reflect on HOW I'd gotten where I am. I mean, if it wasn't
my heroic courage & pluckiness, what on earth was it?
Well, I had 2 key advantages:
First, from my parents I had this wild
idea that I was entitled to everything anybody else was. Second, progress was
on my side–medical progress, technological progress, and civil-rights progress.
But perhaps most of
all, what's buoyed me onward is the community of people with disabilities, this
community of SMA families. So thank you for having me. I welcome your questions.
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