The last couple of days have been a real “glass half full, glass half empty” internal debate week for me. That type of chaos in my self-talk usually means it’s time to rebalance my Feng Shui. Do I study Feng Shui, well not really, I have researched some aspects of it but I can’t really say I’m married to it. But I don’t golf, don’t hike or cycle and I’m retired, sort of, so I had to do something. I figured burning candles, arranging rocks and hanging wind-chimes was as good as any.
When I was fifteen in the Children’s Hospital there was a period where I would spend Saturday morning listening to a buddy (another polio) practice his trumpet lessons. A few of us would gather in Tom’s room on Saturday mornings to listen to him practice. Herb Alpert was pretty popular at the time so brass instruments were favoured. Plus it was easier to practice a trumpet when you were on bedrest for months at a time than it was a guitar.
Mind you this had nothing to do with listening to the trumpet, the reality was it was a distraction to drown out the cries of an eleven year old burn victim. Saturday’s were the day the nurses would scrub down the tub room and sterilize it before soaking him in the tub to peel away his dressings. Then they would apply the new ones. I don’t think I need to be all that descriptive in his reaction but it was enough for a handful of us to mask it with trumpet music. The treatment of burns in 1965 was no where near where it is today but it was all done with the best of intentions. This poor kid had been trapped in his farm home when the fire broke out and was terribly burnt. He never went home…I have no reason to ever see the glass half empty!
The distraction Tom’s trumpet provided also supported the purpose of our polio camaraderie, staying focused on a world where the “glass was half full”. I like to believe that the most successful of the polio community that grew up in that hospital went on with a purpose to make a much more inclusive world, in part, for all the kids that never made it home from the hospital.
One of my major purposes has resulted in over forty years of fighting for access. Physical access, community access, labour force access, attitude access and now technological access. That is two-thirds of my life battling for access and yet access to friends and family continues to diminish. The past week has had me challenging my own beliefs regarding the success of my purpose.
My son turned thirty this past week so my ex came into town to help celebrate the occasion. She spend the two weeks at his house and a lot of time with our grandson. My son rents a house that isn’t accessible. Stairs down into the yard, about fifteen feet of sidewalk and then more stairs back up to the front porch so going over there just doesn’t happen. But then I don’t have any sibling with an accessible home and fewer friends so he has been role modelled well.
In order to do the birthday thing with my son and grandson we went the restaurant route. My son picked the restaurant (a nice little local place) and my ex texted me the name. I knew where it was so I met them there. I got there first as my grandson was playing T-ball that night and they were coming to the restaurant right after. As I said a nice little place with a few minor issues that are easily overcome if you are not traveling alone. I had arrived before the birthday boy arrived so I manoeuvred it on my own.
The entry had that dreaded gradient and required a precarious balancing act while I pulled the door open (nope no automatic door opener). Once they arrived we had an enjoyable time until I had to use the washroom, not accessible. The door was too narrow to get my wheelchair through and even if it had of been wide enough the 90 degree turn required once through the door would never have worked in my chair. I don’t know how this made it through the inspection process however this is Nanaimo which, to me, seems very resistant to anything that happened after 1980…I continue to locals decry me and don’t understand that access is legislated. A few have actually accused me of lying about it but I can’t be bothered with that level of ignorance.
I don’t have a sibling with an accessible home and fewer friends so I can’t really hold it against my son. I’m a little disappointed, when those that are closest to you don’t consider access an issue how can I expect society in general to take it seriously. Now I can look at this as a condemnation of myself on how poorly my life long purpose worked out. OR I can look at a purpose that is even more important to me.
The purpose of independence. The people that know me the best are use to me just “doing” things. Crawling up stairs, hauling my wheelchair across a barrier to get to the other side, etc. I’ve done that all of my life. Like it or not we are all getting older and this body just doesn’t act like it did before I hit fifty. Regardless, my purpose of getting people to ignore the polio has been very successful.
Although I continue to be very independent architecturally I am becoming socially isolated. From all accounts aging and social isolation is a growing epidemic. As access becomes harder, social isolation becomes easier and suicide rates increase. This is simple cause and effect which, after listening to so many of the residence of Nanaimo, is not as simple as I think it is.
Fortunately I am a techie and a frequent user of social media. The physical access may not be as accessible as I once thought it was but social media breathes some hope into the future for those threatened with social isolation. And so a new purpose emerges, that of doing my best to promote access to social media. The glass is half full again…
Just one man’s opinion…
A Poster Child's Perspective 