Sunday, June 16, 2013


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.