Friday, August 29, 2008

Never Delay

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.


rickismom said...

An excellent tribute to the humanity of man, and the empatitive of deinstitutionalization. Here (in Israel) we are at the start of that fight (apartments in the community only being approved for the more "high functioning"). Most of the less-high functioning individuals are placed in institutions or "apartments" which are mini-institutions. Its encouraging to read this view, and a reminder that blame is easy to place.
[Just like my daughter non-sucess in inclusion was blamed on everything but the school. Imagine the surprise when she switched schools, and entered a class two grades higher, and was included with great sucess!]

ntmjbmom said...
This comment has been removed by the author.
Tamara said...

Beautiful - thanks for sharing that one. The only experiences I've had with institutions were two field trips in high school many years ago.

And from just those two short visits I can totally imagine how he must have felt to leave that place and be in the world.

John R. said...

How beautifully written and only additional thought pertains to the "waiting", a subject of which is talked about so much in our world.

This man's waiting was truly at the hands of all his planners, professionals, possibly family members, doctors, lawyers etc...

I believe more and more, each day,(even working in an agency that does seemingly progressive things for the "badly behaved" and complex people we suport and teach) that our restitution has yet to be given to people with intellectual disabilities living in the context of many agencies or institutions.

I think of; the behavior plans, the medical protective oversight tomes, the constant "meetings" (some of which NOT held with the person about whom the meeting is called(a personal disgust I have about our system), the diet plans, the leisure plans, plans, plans, plans....person-centered plans???????!!!!!!!!!!!

Plans are great. We all need them and should use them. hunch in the way we utilize is that they are ultimately more tools of institutionalized institutionalism as they are used as direction booklets and instructions for human beings. Most plans I come across make people wait to have a life or get a life.

Stop planning and start living. I try to give this message to those with whom I assist in getting lives they want. It is a tough job in the face of some colleagues who could be considered captors.

Anonymous said...

Dave......Taking his rightful place in the community with his peers!
That's what someone said about my boy. I am pleased your friend took his rightful place.....even if it took longer than expected!
Beautiful tribute!

Anonymous said...

Dave your could have been writing about my older brother. I didn't know about him growing up, I was in my twenties when my mthoer broke down and told me about him. He lived in a state hospital until he was in his late 40's. He couldn't move out until my parents died. I worked with them to get him into a place near me. It was a real struggle because, as much as I visited him in later years, I was a stranger to him. He died, hit by a car, only about a year after he moved back home. But what a year he had. I remember the first time he had cotton candy. He cried. He was so happy, he cried. At least he had that. At least he had a home. You're post made me cry. It made me think of him. Thank you, Annie

Belinda said...

Genesis 35:29
29 Then he breathed his last and died and was gathered to his people, old and full of years.

"Full of years."
I love that phrase, because only God knows when a person is "full."

Anonymous said...

Dave: i recieved this post as an attachment at work this morning form Donna. I was so fortunate to have know although briefly this gentleman, and got to witness te look on his face (Joyfull) while i sat with him on the first day of freedom in his new home, in the park across from his home watching children running and playing seeing a dog chase after a stick... all things we take for granted in our lives...yet still a miracle to him.

Kim said...

Hi Dave,

I just stumbled upon your blogs today -- via searching, I found you have an impressive number of posts on "the R word." "Retard" (and there ugly ilk) is a word that I've had a huge problem with for years and indeed have done a series of posts on this myself (found in the "Don Gato" series, linked in my sidebar, if you're interested, as I'd LOVE to hear your opinon on them!)

I will be back later to read your blog in depth, but just wanted to drop by and say hello.

Also: LOVE your survey there up top!
This is the first blog I've yet to come across that takes issue with "the R word" and I am ever so glad to see it!

Also ALSO: this post is beautiful and made me cry -- good work!

lina said...

I can't help but feel sad for a young man's life lost, but I'm so happy at the chance he had to live his life, finally.
thanks for sharing.

Anonymous said...

On a more positive note.... the US now has a vice presidentail candidate with a child with Down syndrome. Sarah Palin was picked! Regardless of political views (I don't agree with her on much and I doubt you do either) she is a parent who carried her child to term with a prenatal diagnosis. She has made a statement that her child is worth it, wonderful and gorgeous. I am very hopeful that this will bring lots of positive press to the Down syndrome community!