Taking Note

When I was in University, a generation or two ago, I took a course entitled, "Mental Retardation 1" which was followed by a course entitled, "Mental Retardation 2". It would be years before we, here in Canada, stopped using those words and begin a relentless search for 'what to call it'. But that's the stuff of another post. Taking those classes marked the beginning of my formal training in the field of intellectual disabilities. But the subject matter wasn't disability, it was 'deviance' and 'difference' and 'disgust'. The professor only ever spoke of 'other' of 'lesser' of 'object'.

This was particularly true with a film that we saw. Like any other university students, when we all came in and saw the projector set up we were mightily relieved. A break from the lecture, it didn't matter if the film was a dull as the lecture, the lights were off ... you could snooze. None of us snoozed. The film was about 'syndromes' and to make that clear let me be clear, it wasn't about people with syndromes, it was about 'syndromes'.

I was horrified. A man in a white coat with a long wooden poker stood and talked about various syndromes. He began with 'Down Syndrome' as 'one of the most common' and after talking about the extra chromosone another man, also in white coat, pulled into camera view a naked teenager with Down Syndrome. There was terror in his eyes as he stood there, naked, while the professor pointed to his body and discussed how the 'syndrome evidenced itself'. Vomit rose in my throat, not at the physical difference - but at what I saw then and now as the casual nature with which power was exercised.

The point of the film was clear - they were OTHER, DIFFERENT, DEVIANT. Their existence was tragedy. Their lives were a waste.

Even as I began working in the field, many staff spoke of OTHER, DIFFERENT, DEVIANT. And I wondered if I'd live long enough to see the day ...

And I have.

A few days ago a woman I know well came into my office grinning. "You know my daughter is pregnant," she said, beaming. I totally get how pregnancy and childbirth are miraculous and exciting, so I smiled back and told her that, yes, I did know.

She then went on to tell me, the smile never leaving her eyes, that they had just recieved the news that there is a pretty significant likelihood that the child will have spina bifida. The positive test result had been followed up with a discussion with a genetics person and her daughter simply decided not to confirm the test with more tests but to simply proceed with the pregnancy. The family knew someone with Spina Bifida, someone who lived a whole and good life, and the news was greeted with interest, but without alarm.

"Big deal," they all thought.

We sat and chatted, soon to be grandmother and I, about her daughters casual response to the news of disability. And as she talked, I remembered. A young woman, standing naked, at the end of a poker. A doctor talking about how Spina Bifida, 'evidenced itself' on her body. I remembered people taking notes about syndromes but not taking note of her.

But times have changed. People have emerged, peeking around their disability to see that it was safe, into the real world. Kids with Down Syndrome, and Spina Bifida, and Cerebral Palsy are going where they were never allowed to go ... home.

And the world has changed.

For one baby at least.

The world has changed.