I suppose you could technically say my connection with disability began 40 years ago, when I was born with what my parents always referred to as “a hip problem,” but which I later learned was “double tibial torsion” (which suggests a lower-leg issue). All this meant was that my legs were apparently missing some part that makes them stop from twisting, so when I walk or run, my legs twist a lot, which makes me kind of slow and a little more easily tired than most people. But I’ve never considered that a disability, because it has never stopped me from doing anything (other than running fast), and people rarely even notice it. Occasionally, someone will stop me and ask me why I’m “limping,” but that’s a really rare occurrence. However, I suppose it’s a tiny connection to disability in that I was certainly an outcast in sports and PE classes, as I’m quite slow and ungainly. I took my share of bullying for it.
But my real connection to disability started almost two and a half years ago, when my son Sam came into this world sporting an extra chromosome. To answer the question I’ve gotten a hundred times, no, we didn’t know before he was born—we declined prenatal testing for a number of reasons. And no, I’m not sorry we did—on the contrary, I’m glad I enjoyed a worry-free pregnancy, as I can be a bit of a worrier and certainly would’ve worried about that scary term “Down syndrome” if it would’ve come up in my pregnancy. Because, you know, the medical community is pretty darn good at telling parents all the scariest parts of Down syndrome and not so good at telling parents all the good that comes along with entering a whole new world you never expected.
As it turns out, Sam is the best thing that ever happened to our whole family—to me, to my husband, and to our older son, Theo. Having Sam has changed everything, which is kind of funny because life with him is really pretty darn normal. But somehow, entering this world of “disability” was a bold new step that has made the three of us stronger people individually, and a stronger family unit.
And the disability community? Full of awesome people. I’ve been taking on roles as an advocate where I can, and I’m constantly meeting new and amazing people as I go. It’s a beautiful world….