“Success breeds complacency. Complacency breeds failure. Only the paranoid survive” – Andy Grove
Today marks my 69th anniversary of my initial polio diagnosis. I had thought of putting my meanderings to bed and hadn’t really planned on writing these anymore but here I am. I have spend the last five weeks trying to discern what I want to do next. I just turned 72, an age most polio persons were ever expected to reach. Growing up believing I would have a short life span I lived hard for the first 30 years (to be clear the first fifteen was almost all hospital time) so I went through my “bucket list” between fifteen and twenty-six. Some of that bucket list carried a few commitment I had made to a number of hospital buddies who never had the privilege of seeing their 12th birthday.
When you grew up believing you would be dead within 25 to 30 years it can take a while to “grow-up”. Around my 25th birthday I started to realize I wasn’t going to be dead by 30 which meant a complete life style AND adjusting the old belief system. After
It is now, only with the gift of hindsight, that those years would actually be the most productive and “enjoyable” years. I don’t think it matters if you have a disability or not there is a lot of truth to the old adage “youth is wasted on the young”. The adage refers to the immaturity that comes alongside the energy of youth meaning that despite having the energy to do many good things, young people will waste that energy on silly, trivial things. This is even more so when you have grown up with a disability. I spend way too much time just having fun in the first thirty years of my life but I had fun while squeezing in experiences from St. John’s Newfoundland to Victoria BC. And almost 72 years later, here I am, back in Calgary but with a very different outlook. Crutches and wheelchairs are fine when you’re 30 or 40 but the world isn’t quite as accommodating at 70.
With that said, I had too many childhood friends that never had the privilege to reach sixteen, let alone 70 so I have nothing to whine about. I do remember all seven friends who died before, well most of them before ten but two of them made it to 14 and one 16. I was actually at Inga’s 16th birthday party when she collapsed and died. According to the healthcare of the day, she was probably dead before she hit the floor. And then Billy, he also lived in Thorncliffe, made it to 31 becoming one of the longest living Duchenne muscular dystrophy survivors of his day. His folks were also good friends with my folks. I knew Billie from the community, he was never in hospital with me. However, in my head, I was going to have some type of experience on behalf of those who left the Children’s Hospital in the “black station wagon” and experience I did.
So my lives development, like so many of the polio survivors of the 50’s, was based purely on learning how to survive in an institutional setting. My “family” was primarily my disabled peers. That was the way of the 50’s and 60’s, the disabled were “warehoused” in institutions. The community were not prepared for a bunch of disabled kids, the WW2 vets were paving the way but the kids had yet to catch up. There was no “universal healthcare”, or education, or participation. That level of inclusion, like any form of civil rights, required activists committed to independence while maintaining a strong sense of survival along with regulatory knowledge.
However after having watched the foolishness we now pass off as politics and “Freedom convoys” I can’t just sit here letting my anger simmer. I have invested over 50 years fighting for disability rights and inclusion in the community. Following this most recent event involving Shailynn Taylor, on something as “basic” (I thought) as an accessible place to live I can’t quit. When the best advice she could get was to move back home and live with her parents in their Saskatchewan home, well that’s just kicking the can down the road AGAIN.
However after having watched the foolishness we now pass off as politics and “Freedom convoys” I can’t just sit here letting my anger simmer. I have invested over 50 years fighting for disability rights and inclusion in the community. Following this most recent event involving Shailynn Taylor, on something as “basic” (I thought) as an accessible place to live I can’t quit. When the best advice she could get was to move back home and live with her parents in their Saskatchewan home, well that’s just kicking the can down the road AGAIN. People may not want to hear what I have to say most of the time but I refuse to deny the achievements made in my fifty+ years of activism. We shouldn’t have to be fighting the same battles that, I thought, had been conquered 40 or 50 years ago. The threat of rolling back something like Roe Vs Wade is not the time for people who believe in actual “social justice” so I’m going to piss a few people off and bring back my meanderings. Beats the hell out of swearing at my condo walls every time the news pisses me off.
Just one mans opinion.