It's always a shock, isn't it?
No matter how much you time you spend preparing, you can't.
Death comes, always, to the unprepared.
He was a man that I worked with many years ago. I came to know him and his family well, his staff, ever changing over the years, always knew of our continuing connection. The Internet brought us even closer and he would send me short emails every now and then, often with pictures attached. He was always a very private man, and I want to honour that here. As much as I would like to write a memorial, I will not.
But there is something I do want to say.
He died free.
After a lifetime in an institution, living as a captive. Walking the land of the long corridor and the short leash, he lived dreaming of a home of his own. Not a shared home. Not a family home. A home of his own, where everything he touched was his, where people left him alone and where he determined who came through the door. It was a dream he thought impossible.
But it wasn't.
He died free.
His disability disallowed others from hearing him, hearing his voice, hearing his persistent plea for a place of his own and freedom to live there.
His disability disenabled others from understanding that his primary right was to have the dream he wanted to dream - that they did not have the right to smash his dream into measurable, achievable, meaningless objectives.
His disability discouraged them from moving ahead with courage and conviction, allowing him to lead the way.
His disability displaced their understanding that his humanity meant that his voice was equal to theirs and his choice needed to be respected.
So it was a journey.
A journey past those of us who provided service that wasn't service and support that wasn't support. A journey of teaching people what their job is and, more importantly, what their job isn't. A journey that enlightened others who'd not had the experience of being pushed aside by the sheer force of will of a man determined to have home and freedom.
He was a quiet man.
But he lived a loud life.
And in his own home, he died, free.
I'm sorry for the many years it took to get what many of us take for granted, but so glad this gentleman died free.
ReplyDeleteHe was a very strong man and I am so glad that he died free. Thank you for writing about him.
ReplyDeleteLove it. Now only if we didn't need to celebrate this as an exception as opposed to the norm.
ReplyDeleteAnd before that, he fought to LIVE free, and achieved that.
ReplyDeleteA testament to your friend.
So sorry for your loss, Dave.
ReplyDeleteSorry that man is gone. I'm glad he (eventually) got to live free and that he died free. I... I hope he died well. I don't know how to clarify that, but to say that someone I knew fought for and lived and died in just such freedom and her death haunts me.
ReplyDeleteG (my neighbor) had fought hard for her freedom. With it, she shopped, cooked, cleaned, gardened. And fought for a ramp at a particular required (and close) place. (Thank you , G.) Seems to me that she lived pretty well, but some people think that's impossible with disabilities.
G started having more trouble with the usual issues and new, very different ones appeared... as she started feeling unwell in the ways common to infection. A doctor's visit confirmed just that and she left to get an antibiotic... after enduring a lecture. The doctor seemed sure her condition was worsening disability and nothing to do with the acute infection he'd just found. (After all, aren't "normal" people at their best when they're sick?) He berated her at ever having left institutional care, told her she really needed it now that her disability was getting worse, and that if it kept going that way, she'd have to go into care. G called when the illness kept getting worse despite the antibiotic (resistant, apparently). They reiterated the threat of stripping her of her freedom (as she was getting worse) and told her to keep taking the antibiotic (which she did, to no avail). G didn't bother the doctor again -- he'd already decided the problem was G's disability and her insistence on freedom, not an acute infection of some abdominal organ, which he had good evidence existed. About a month after the ineffective treatment, this strong, confident woman died. Proximate cause was a treatable infection. Ultimate cause was her doctor's prejudice. G fought so hard for her freedom and won it. A few years later, ableism killed her. I lack the words.
What strong people! Such a pity the world is set up so that they must be.