Text of remarks
by Patricia E. Bauer
delivered at the annual conference of
the Down Syndrome Guild of Greater Kansas City
March 28, 2009
It’s more than a quarter of a century now since Margaret arrived and our family’s journey began, a journey that started in isolation, seemingly without history. As far as we knew then, we were the first couple in the history of the world whose utterly adorable baby had gotten a diagnosis of Down syndrome.
My husband and I knew nothing about disability then and knew pretty much no one who did, and somehow we instinctively thought without discussing it that we wanted to keep it that way. We didn’t know what we were up against, and we didn’t want to know, for fear that knowing might make us fail.
Later I learned that some doctors then were withholding routine medical treatment from infants like mine. In the month that Margaret was born, the great legal minds of the day were debating whether or not that was okay. Friends of mine at the newspaper were following this debate, I found out later, but couldn’t bring themselves to tell me.
The memories of those dark days fall away when I come into bright rooms like this one, full of hope and good cheer and the knowledge of allies made and battles won. I am humbled by your enthusiasm and encouraged by your shared sense of commitment. I salute your imagination, your willingness to learn and your generosity of spirit. Yes, indeed, we have come a long, long way in a very short time within the span of Margaret’s life, and of mine.
Of course, the tricky thing about being part of the disability community is that you don’t know you’re a member of the club until one astonishing day when it all becomes clear, and you realize that pretty much everybody ends up in the club sooner or later. But it took me a while to figure it out.
For the first decades of my life, I wasn’t consciously aware of what was going on. I didn’t know, for example, that the average lifespan of a person with Down syndrome in the year I was born was something like fifteen years, or that many â€“ maybe most — people with Down syndrome in those days were sent off to live in institutions that were more like prisons.
One of those institutions was just a few miles from my home, a hulking stone pile behind huge metal gates. We kids held our breath whenever we rode past. (more…)