Thursday, March 21, 2013

Did Someone Come? A Post for World Down Syndrome Day

I begin.

I'm nervous.

And a little scared.

We, all of us, meet in the parking lot of the school. Our feet crunched on the gravel as we all walked in. For a group of young University students to be so silent was unusual. We go through the doors and our entrance is watched by a young girl with Down Syndrome who was seated on a chair outside a door, waiting. Her eyes looked us over, ours were fearful to return her gaze. We were us, she was them - and we all knew it. The Principal came out to greet us accompanied by our professor. The tour would begin smartly. We trooped behind her and looked, like obedient students, whereever her finger pointed. She seemed determined that what we would see would be classrooms and playgrounds and rooms for music and rooms for art and one big gymnasium thrown in for good measure. This was a SCHOOL.

And we did see a school. But we also saw kids, lots of kids, all sorts of kids. Those with Down Syndrome were the easiest to identify - we'd seen a pictures in our textbooks. They, these kids, looked at us with suspicion. It was like they knew, somehow deeply knew, that out there were scientists in white coats who were searching for what was then being called a 'cure' but really was simply 'elimination.' I didn't know, or even suspect, that the hunting had begun.

A few years later.

I am in Montreal.

I am laughing.

Somehow, and I don't remember how I ended up sitting at a table with a group of twenty year olds, all with Down Syndrome. They were laughing, I was laughing. It's a pleasant memory. All I remember was that it was lunch time, I had been brought there for some reason. We all chatted and I remember thinking about how full of life these young people were. Full of hopes and dreams. Full of plans and possibilities. Then, I was in a car being driven away. The woman who had taken me there, a woman who would only months later adopt a child with Down Syndrome, said to me after I told her what fun I'd had with the group, "Remember that, it may never happen again." Her tone was serious and I looked at her and said I didn't know what she meant. She said, "Surely you've noticed that they are disappearing. Surely you've noticed that where were once people with Down Syndrome there are now only empty chairs." I hadn't noticed. I really hadn't noticed. I closed my eyes and thought of my last visit to a sheltered industry. They weren't there.

Many years later.

I am in Dublin.

I am in shock.

It's the Down Syndrome World Congress on the campus of the University of Dublin. I am standing surrounded by people with Down Syndrome and their families. Over the next several days I would do workshops for families, workshops for people with disabilities and I would sit at a book table and chat with many people from many places. It seemed like a celebration. But it also seemed like a coming together, a gathering of reassurance. It was like we were all getting a group hug without being touched - we were with the survivors. We were with those who's job had become much more serious. Much, much more serious.

A few years ago.

I am in Northern B.C.

I am listening in earnest.

I don't remember his name. I am so bad with names. I had a picture of him and I, together, once, but can't find it either. Joe and I are not good with pictures. He is speaking to me about having Down Syndrome. His awareness of the moral issues raised by eugenics was astonishing. He wanted to make sure that everyone he met learned, from him, that having Down Syndrome is just a way of being. He wanted to be a beacon of hope that any expectant parent could see, shining through the darkness of fear and the purposeful ignorance of the medical community. He wanted to live his life seen, he wanted to be out and proud as a person with Down Syndrome. He understood that there was a battle going on for the existence of those like him.. He got it.


So do I.


So do many.

That little girl in school eyeing us with wariness. I think of her often. I see her sitting there, waiting. She looked so alone. Entirely alone.

I wonder who came for her.

Because in that day, in that time, she could, truly have been, entirely alone.

Now, in a different time, in another age, little girls and little boys with Down Syndrome have parents, and homes, and communities.

But the scientists are ever closer.

One day.

I wonder how far away.

There just may be a little girl sitting outside a door underneath a sign reading, "and then there was one."


Colleen said...

When I think of the people I love who have Down Syndrome I shudder to think of a world without them. When eugenics was public policy it would have been easier to oppose it. Now that same ideology has gone "private" and I have no idea how to oppose it. How do you tell expectant parents that, despite what the doctors have told them, this child will bring joy, this child's life is worth living? The biggest problem is not the extra chromosome - its us.

Unknown said...

Oh Dave ... I just want to cry! Big loud sobbing tears that such a loss can be a reality. Thank you for writing this, which I shall share and share. I celebrated today in Australia by holding a morning tea. My son's school sent home a flyer to every family "10 things people with Down syndrome want you to know", you see my son has Down syndrome and is attending a mainstream school in a support unit. He takes part in all the school programs as a peer in mainstream groups and academically is supported in a class designed to do so. We are lucky, not only for having such a community but for the blessing of my son. Thanks again. Sandra xo

"Mike" said...

Dave, I think you're right--it's just a way of being in the world. Piss on pity.

A revolution of consciousness is the most powerful one, because no one, no one, owns your mind. Think about how horrifying a book like *1984* is. I see that happening every day, in every way, every moment, when people are duplicitous. It sends the wrong message, in a universe of different ways.

Just a palm twist is all it takes, some times, a more nuanced and subtle approach that depends on others.

Let's give it up to Jerry, and maybe something more than 40 days and nights.

Man, just out of my head these days. If there's been any confusion in my blog posts (I'm not much of a blogger yet), my apologies. Maybe you can show me how to work these gizmos sometime Dave. We should really catch up.

Dave Hingsburger said...

Mike, are you on Facebook???