In all seriousness, my connection to disability really doesn't go back terribly far. Some people have those other figures in their lives who helped shape who they were, other people who may have connected them in some way to the disability community. Perhaps they were connected themselves through their own disability. I have only minor brushes with disability prior to the birth of my daughter, 6 years ago today (yes, today is Samantha's 6th birthday!!!).
Let me begin by clarifying that there is, to me, a huge difference between the words "disability" and "disabled." My daughter has a disability, but in no way is she disabled. She is perfectly able to do things, given the tools and the instruction. Her disability prevents her from learning or doing things in the same way as other people, meaning there may be additional steps involved, a more circuitous (on my list of words I love, btw) route to reach her goals.
Growing up in the 70s and 80s, while it doesn't seem all that long ago to me, was a very, very different time for the disability community. Those times were still pre-enlightenment, as I like to think of it. Before people with disabilities were brought out into the light. When they were still shuttered away, kept out of view, pushed aside. I have some brief memories of people who crossed my path, who made impressions on me, and I feel fortunate to have learned from them.
I didn't actually know anyone with Down syndrome, although when Samantha was born I was convinced, in retrospect, that my older cousin, L., had it. It turns out that she'd had a birth injury that led to her intellectual disability, not an extra chromosome. I spent enough time with her to know that she was different, that you had to be patient with her, but that she was part of the family, kept at home by parents forging the way, refusing to shut her away in an institution. I never knew much about L., other than that she was just there at the family gatherings, one of us. I haven't seen her in years, and think of her often.
My next door neighbors during my grade school years, playmates of mine, had an older sister, probably in her late teens or early 20s. I don't actually recall her ever setting foot outside of the house, not even in their garden. But they loved her, their parents loved her enough to protect her from the world, kept behind closed doors with the mentality of a 4 year old. She was always there, always doting on me, always disregarded, although not maliciously, as someone we didn't necessarily want to play with. I had forgotten about her until recently. It was almost a shock when I remembered her, suddenly, and I was sad. I wished I could go back and spend time with her, to help brighten her day, open up her world. I wonder where she is now...
There were the occasional glimpses of others, in the hall at school as they switched between those classrooms, the ones that were far from our own, separate, different.
You know at the beginning of this post where I said that my connection to disability doesn't actually go back all that far? I think I was wrong. It went back way further than I realized when I began to write. I think if we all dig back, dig deep, into the hidden corners of our memories, we may find those pieces of our puzzles and see that we were prepared long in advance for our enhanced lives today.
My latest connection to disability, the one that cements my life, has made it what it is right now, has enhanced it beyond my wildest dreams, began 6 years ago today. May 30th, 2006. The day Samantha was born, the day we were introduced to our new baby girl. But our lives do not revolve around Down syndrome, they do not revolve around disability. Our lives are normal, average, better. Our eyes are more open to the world. Disability exists. Down syndrome exists. That's the connection.
The big 6 year old, on her birthday morning before school (from my cell).