I got the news via email. While I love the speed that information travels electronically, sometimes bare words, without the warmth of a human voice, are stark and cold. So when I read about the death of a man with a disability, all I could see were the strong, hard words printed black against a white background.
Feeling for me, and I suppose for all of us, is a complex thing. As a child there were the four basics; glad, sad, mad and scared. But as an adult, knowing how to feel sometimes takes figuring. Facts are not simple, they need to be seen in context, in interpretation. The fact of this man’s death, simply, alone, leads me to sadness and grief. But the context of his death makes knowing how to feel difficult.
He died of pneumonia, he died too young. Again, these facts lead me towards a tragic interpretation of the end of his life. But there are other facts. He was one of the people who moved from the institution to the community. He’s only been here a short while. Just saying that frightens me, I can just imagine people saying, “See, you shouldn’t have moved him.” There are people who have a vested interest in finding freedom too risky, liberty too costly and who take a stingy approach to justice. These people may use his death to justify a demand for continued captivity and servitude of people with intellectual disabilities.
But, I cannot see it that way.
You see, I once worked behind institution walls. And yes, there were wonderful staff who tried hard in difficult circumstances to make the institution home. But an institution is not home. An institution is an institution with long corridors, big wards, locked doors and closed minds. An institutions breeds captive, captor relationships even if not wanted, even if fought against. An institution is a jail for those convicted of the crime of difference. I know. I worked in two such places. I smelled the smell of captivity. I heard my footsteps echo in corridors as I walked by wards where people moaned and cried. So I cannot see it that way.
Yes he died.
But he died the way he was born. Free.
I remember reading his profile. The institutional reports painted a bleak picture. They presented a man for whom community was simply not a realistic option. His behaviours – extreme. His needs – extraordinary. He ventured seldomly, if ever, out of the institution because the risk was too great, his behaviours too severe, the safety of others were paramount.
Wading through the reports, reports of failure after failure, of ever increasing severity of programming, of descent into a kind of institutional madness – he will submit, he will change, he will BEHAVE. This was the man who was to move. This was a man we need fear.
But the decision was made. He would move. Every possible preparation was made. Training done. Plans in place. Emergency scenarios drafted and practiced. But he moved.
And moved well.
He adapted quickly, so speedily that it was hard to see it as adaption. It was like he’d waited for water and now he could finally swim. It was like he’d waited for air, and now he could finally fly. It was like he’d waited for freedom, and now he could finally just be a citizen. It was like he’d been waiting a very long time.
He did not get pneumonia because he was in the community. He got pneumonia because he got pneumonia. People like to make connections that don’t exist. On the morning he first sniffled, he wore pants. He did not sniffle because he wore pants. He sniffled because he was human and human beings get sniffles and sometimes sniffles turn into pneumonia. That’s what happens to human beings. That’s what happened to him. His illness is a huge testament to his belonging to the human race. Someone who was considered ‘other’ after all was simply ‘one of us’.
What matters here, and it truly matters, is that he was free. That in the last few months of his life he got to prove everyone wrong. He got to live up to his potential. He got to go to the mall. Alongside neighbours, alongside regular people. A tremendously simple thing made profound only because he did it. Successfully.
What that must have meant to him. Surrounded by the smells of the food court and the soft chatter of others. It was him, there, in the chair. Not locked away. Not out of sight. Not protected from himself.
What it meant to others became obvious. As news of his death spread through the neighbourhood, people came by to offer condolences. They didn’t know the man before, the man locked away. They only knew the man who became their neighbour. They did not fear him. They did not shy away from his difference. No, instead they came forward and said that they were saddened at his passing. He was to them simply a neighbour, a guy they saw living his life at home. Again, he exceeded expectation. Instead of being feared by the community, he was ultimately embraced by them.
He was free.
He was home.
He had arrived.
A few years ago a young child died and a father had difficulty with getting over and moving on. A friend said to him, “You keep mourning a life interrupted, you need to understand that your daughter lived a life completed.” That stayed with me, and it comforted me as I thought of him.
A life completed.
Amen to that.
Imagine though, that we’d waited. That the community took a few months longer to plan, to get ready. Imagine that we had waited until today. The day after his death. He would have died abandoned. Died forgotten. Died untested. It would have been too late.
Do not delay in doing the right thing.
Do not wait to provide restitution.
Because every day matters.
One of his final trips to the community was a big one. He went up the CN tower. One of the world’s tallest freestanding buildings. At the top of Toronto he could see the world. The world that was now his to explore. In the heavens there he was … free … standing.
And that’s how we will remember him.