I received an odd gift in the mail yesterday. It came in a brown envelope with my address written in firm hand in blue ink, there was no return address. I opened it with great curiosity, I have liked getting mail all of my life but in the last few years have had to settle for the thin gruel of bulk mailing and catalogues. Inside the envelope I found a letter and a picture. The letter was from someone I worked with years and years ago, when I was very young, in an institution for people with intellectual disabilities (although those weren't the words used back then) here in Ontario.
Reading I discovered that I was being gifted with a photograph, which I found tucked at the bottom of the envelope, because my old colleague was downsizing. She told me that she was moving from a house to an assisted care apartment, and she had come across a bunch of old photos from all those years ago. One of the pictures she thought would be of interest to me. She was surprised to find this blog and then when she googled me, even more surprised to find where my career path had taken me. So, she tracked down my address and popped the picture in the mail. She wished me well in my career, said that she had confused memories about those days of working in the institution. Believing she was doing good then, wondering if she contributed to a culture of captivity now.
The photograph showed me on the ward laughing with one of the people who lived there. There is brightness in our faces. It looked like simply an ordinary moment between two people. However, when my eyes left the laughter and looked anywhere else in the picture, the desolation and isolation of the drab background is startling. Life. Death. Inclusion. Exclusion. Freedom. Captivity. How could this moment of laughter have happened in this place where even the harshest disinfectant couldn't erase the smell of disrespect.
The fellow in the picture with me wore clothes that didn't quite fit, a shirt too loose, pants too short, socks that no one noticed were mismatched. I have no memory of the moment. I don't know what we were laughing about, but the laughter, and I looked hard to see, looked genuine. I'm glad of that at least.
I did see him again. I lasted in the institution for less than a year. But maybe ten years ago I was teaching a class in eastern Ontario on abuse prevention. I was sitting at the desk getting ready. I wasn't yet a wheelchair user but the ritual I have of going over everything before I started has never changed. He came and stood beside me, quietly, not interrupting. I looked up and saw him. He smiled a 'hello'. It took me several moments to recognise him. He had aged. He wore clothing that he had chosen and that he wore well. When I recognised him, finally, I asked him to sit with me for a moment. He told me of his life, now. I told him of my life since. He was happy.
The picture in my head of that moment stands in stark contrast to the picture that sits by my keyboard now. In both pictures are two people talking. But in the new picture both men are free. In the new picture the background and the foreground fit together well - laughter in a place of laughter.
His journey and mine have been different. He walked as captive to freedom. I walked as captor to apology. Like the woman who sent me the picture, it is hard to know how to think about those days. She and I worked where people worked who wanted to work with people who had disabilities. She said in her letter that sometimes, when she dreams, she doesn't dream pictures, but she dreams of the smell of that place. The smell creeping into everything, her clothes, her skin, her soul. She wakes from those dreams full of panic.
"I came to know that, no matter how hard we tried to make it better, the place just should never have been built. I just hope that all the people who have gone home remember some of us with kindness."
I want to write her back.
And tell her that that too is my fervent wish.
You are such a good word artist Dave. Thank you for painting the pictures for us. We have much to reflect on, much to learn and much to be thankful for.
May I link to this post on my blog? I've done a couple of posts about institutions, trying to get the point across about what they were like and why they need to be closed...this gets it across much more viscerally than anything I've written.
GirlWithTheCane ... absolutely
Amanda Baggs has also written many very powerful posts about institutions, as someone who has experienced them, at http://ballastexistenz.wordpress.com I would encourage exploring and perhaps linking to a few of these.
One of her important points that she raises again and again is that we should not speak of institutions as if they are a relic of the past. These are still with us today and many are still terrible places to be. Which is why the organization, Disability Rights International, has a campaign to end all institutionalization of children: www.disabilityrightsintl.org
I do hope what I am going to say doesnt in any way justify institutions or the way they treated people. I too remember working in group homes - not the huge institutions that existed before that but still institutions, where else is it reasonable to expect 20/30 adults to live together? Many many times I had converations with staff and "service users/clients/customers" about moving on to independent living. It was pre-community care, moving on was an occasional celebrated happening, it was considered not to be something for all, something to be discouraged if you were not "able."
But 20 years before even those conversations didnt happen, 50 years before the institutions were huge monstrosities housing hundreds in places the public couldnt see - out of sight, out of mind.
It took too long, so many lives lost but there must have been something going on Dave that allowed the conversations of the right to independent living to happen and attitudes to start to change.
I hope that makes sense, if you and many others hadnt worked in those environments you wouldnt have had the drive to see things change.
Sorry for the length of this post but one more thing. Over 20 years ago I worked in a home and there was a young man who was considered "ready" to move on but his family wouldnt let him. I know he is in the community now because the home closed down.
Anyway I was sitting in a cafe a few days ago and without really looking I asked the guy sitting behind me if I could borrow the salt and he passed it. It was then I recognised him and I was so glad I had called him sir.
Dave. Oh, Dave. This is poetry - raw and unbearably sad, but...beautifully so, if that makes sense.
"He walked captive to freedom, I walked a captor to apology."
Gives me shivers. Just yesterday, I posted an article on FB - I'm sure you've read about the 12-year-old boy who was snatched from CDRI and brutally beaten by a DSW.
To say that this is horrific would be an understatement, but I was also aghast to realize that institutions do still exist, in this province, despite all that we know now, in 2012.
I am so very pleased to know that the man you wrote of here is free and -hopefully - thriving. And please know that there are many of us out here, learning from you and from others to ensure that the first half of his life will not be the reality for others in the future.
Having entered the field as the institutions were closing, my experience has been in group homes and individual living. It sickens me to watch what happens in group home and for agencies to cover it up. There needs to be more accountability.
I second the sentiments of so many earlier commenters, especially Belly, who described what you wrote as poetry. Poetry with a poignant point.
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