I was chatting with a friend who was telling me about going swimming with his kids at a public pool in Toronto. He goes there regularly and he and his kids love it and the time they get together to just play. He was telling me about something that happened, a funny 'you'll never believe what my kid did' story when he paused. "Have I told you about the guy with Down Syndrome?" he asked. I told him that he had not.
"I've been meaning to," he continued. He dropped the story he was telling and started a new one. He told me about this man with Down Syndrome who goes swimming at the pool. He sees him there all the time and he seems really serious about his swimming, spending most of his time doing laps and swimming hard.
The story wasn't about a guy with Down Syndrome swimming. It was about the fact that he's there at the pool without staff, without family, without anyone. He's just there swimming and doing his laps. He knows the lifeguards and fist pumps them when he sees them but beyond that he's in the pool swimming, lapping back and forth using various strokes.
When he leaves he waves to and says hello to those he knows and then, he's gone.
What's the deal.
My friend said that he had never before seen a person with an intellectual disability alone, happy, and completely independent. He's only every seen people with intellectual disabilities accompanied by staff or some other form of supervision.
He remarked that, unlike those with staff, this guy seemed to just be so free.
He wanted to know if freedom was ever the goal for people with disabilities or did we as a system always set goals that kept us in some kind of control. I bridled a bit at the question but said that I think that we collectively have defined freedom for people with intellectual disabilities in a slightly different way.
But freedom is freedom.
This guy in the pool, no matter what happens during the rest of his life is free there. In that space he's his own person.
Someone, somewhere, parents, staff, friends, who knows, maybe it was just him, decided that liberty was a concept open to him.
It's strange that this is still a radical idea.
But it makes a radical difference.
Interesting conversation. Freedom comes in degrees...controlled by staff or family, controlled by employer, controlled by law....
and by the laws of physics, too!
I don't know if 'strange' is that word I'd use. Freaking SAD, more like.
So tired of almost every idea I come up with being shot down as too radical and/or risky.
No one prevents ME from trying new things because decades ago I behaved inappropriately in a similar situation so I can't be trusted blah blah blah...
If I did something years and years ago, I'm able to leave it behind me and move on.
The people I support do not have the luxury of leaving things in the past - it's all written down, remembered, and used to justify trying anything new.
There are no doubt some benefits to having staff stick around for decades - but there are most definitely drawbacks as well.
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