Anger and Apathy

Today is just a rant to get something off my chest.  Life can be a bitch to get some of this frustration out there when you have become like white noise to almost everyone around you.  Something happened two days ago and it raises numerous flags for me.

We have #blacklivesmatter, we #bluelivesmatter, and even an #alllivesmatter but I am left with the impression following this incident that there is an underbelly of belief out there that some lives are more valuable than others.  What am I ranting about, the planned, announced and completed murder of 19 disabled individuals, leaving 26 others injured and where is the outrage.  The same outrage that created the movements mentioned at the beginning of this paragraph.

The perpetrator of this horrendous event had been in custody after submitting documentation that he could “obliterate 470 disabled people” to the police.  He turned himself, an action I would interpret as a cry for help and they still choose to release him on March 2.  So we now have disabled killing other disabled, in part, due to a disparity of service provision.

If those closest to us don't get why will anybody else?
If those closest to us don’t get why will anybody else?

This is indicative of a societal thought process, “groupthink“.  In some situations it can manifest itself through terrorism but it can also manifest itself as “disability erasure“.  We begin to marginalized based on productivity and we do it to ourselves.  Although some of my peers may deny it, the truth is approach a Paralympian and congratulate him on his efforts at the “special Olympics“.  Two completely different events but one that inadvertently marginalizes the other.

And now we have done it again.  If this had of been a facility for veterans there would be world-wide condemnation.  But it wasn’t, it was an institute servicing persons with developmental disabilities.  I don’t hear much indignation over this one and that just leads me to wonder how much we have segmented ourselves…

Social Entrepreneurism (Revision)

“The disabled of tomorrow will be those who lack access to technology today,” Terry Wiens 2001

Today was gorgeous and well worth a good wheel along the water front.  Nanaimo’s 50th anniversary World Championship Bathtub race weekend was going on so the water front was very busy.  While enjoying the sun I came across a gentleman using a Batec on his wheelchair and struck up a conversation.  A Batec is a piece of equipment you can attach to your wheelchair and turn it in to a type of three wheel bike run by a rechargeable battery.

Batec2We sat in the sun chatting for a few minutes while he gave me the rundown on the Batec.  This gentleman has only been wheelchair dependent for nine months, a newbie and is really just learning the ropes.  He did have well developed arms and shoulders so we talked a bit about the long term effects of using shoulders as weight bearing joints.  Shoulders weren’t really designed to work as ambulating appendages and this has to be planned for.  He was quite happy to have the ability to use an electric drive to save on the wear and tear of his arms.  What jumped out at me was the idea of improved access to beaches and forest pathways he spoke of.  This tweaked my interest enough to do a bit of research on Batec once I got home.

I was aware of the equipment but had never seen more than a picture of them.  An old friend of mine, Reg McClellan, had made me aware of them.  An Ontario based medical equipment company Reg is involved with started bringing Batec into Canada.  Reg and I were members of the Alberta Wheelchair Sports team over 40 years ago so he keeps me reasonably up to date on what is happening with new wheelchair gear.  He tells me that to this day one of his favourite speaking engagement stories involved the two of us during the 1978 National Games held in Newfoundland.  Since I helped create the experience but am unable to enjoy the luncheon I get current reports on new technological developments in the world of wheelchairs.

Besides the shared interest in wheelchair sports we also have a mutual interest in entrepreneurism.  We went different directions when we left Alberta, Reg to Ontario and me to BC however social media reconnected us about fifteen years ago.  The two of us are definitely not as active in wheelchair sports as we once were but we are still both active in entrepreneurship.  Batec turns out to be an excellent example of what social entrepreneurism can accomplish.Continue reading “Social Entrepreneurism (Revision)”

Memorializing Youth

It has been one crazy busy week and yet I feel like nothing was accomplished.  The week ended on a sad note when I was made aware of the loss of yet another childhood friend.  My thoughts and prayer go out to Randy, Cathy’s surviving husband plus their kids.

This took me back to my last post regarding 63 years of polio.  I had a Twitter response from someone in their 65th year of survival that wondered why I would memorialize such a childhood and that it is time to move on.  I would suggest I have moved on but I also recognize the foundations my youth supplied for my development.

The news of Cathy brought me back to another reason for that post.  By the time I was 16 I had lost four really good friends and in the naivety of my youth made a commitment to make sure I did some living for them while never forgetting them.

Inga dropped dead of a heart attack while having her 16th birthday party.  I know, I was there and Inga your memory lives on.  Peter was 12 and he was removed from the bed next to me in the middle of the night.  He just stopped and as roommates (two of us in that room) we were pretty close.  Peter your memory lives on.  Larry was 13 and never returned from the operating room, Larry your memory lives on.  Doug was 14 and his body was to tired to continue but Doug your memory lives on.  There was a 5th non-polio.  Donny lived in my neighbourhood with Duchenne Muscular Dystrophy.  He passed quietly at the age of 16 in his own home.

Survival is a privilege, never a guarantee
Survival is a privilege, never a guarantee

I knew these kids better than most of their siblings.  We were all hospital kids and we were like siblings.  When you spend ten months out of the year in the hospital and only two in the community your perception of family can be different.  Plus it wasn’t uncommon to spend another of couple of summer weeks together at the local Kinsman camp for disabled kids. Continue reading “Memorializing Youth”

A Time to Turn Around

It has been a difficult six week and although I have written lots, I’ve published nada.  June is my most difficult month and this year was extreme.  June has been my life nemesis month.  The seeds of the trepidation I feel for the month of June were planted in my belief system from a very young age.  Major life events began happening in June sixty-three years ago when my parents received my diagnosis of polio.  June of 1953 saw the end of who might have been and the start of who I am today. So I took the month of June off, spend some time redesigning my site (hopefully more uplifting), examined my life focus and reset some priorities.  Enjoy the redesigned me…

As I said June has always been a difficult month for me, even more so this year having reached the grand old age of 66 at the end of May.  This was just one of numerous birthday’s I grew up believing I would never see so I never really prepared myself for it.  I had never given it any thought and now that I’m here  I have no back-up plans.  Life, to me, has always been about options and the nature of an option is having an alternative, a back-up plan.  That caught me off guard which just made June seem worse this year until Brexit happened.  After that, my issue with June seemed pretty petty compared to what many are facing across the pond.

June also represents the end of the school year for many Canadian students and the beginning of a fun summer.  To me the end of the school year usually meant being discharged from the Children’s Hospital.  The polio generation spend a lot of time in institutions called hospitals but not in the way we think of hospitals today.  These were medical boarding homes.  Think the Cider House Rules with a couple of operating rooms rather than St. Elsewhere…

With WW2 and Korean vets at all time highs the medical speciality of orthopaedics was really taking off.   Polio kids made for a perfect mix of training and experimentation for this emerging field (and I say that with no malice).  We were great candidates for procedures that had never been tried before.

My doctor, a former RCAF fighter pilot, studied orthopaedics after the war.  I was one of his favourite patients because I was right on the border of what might or might not be.  In other words the impact polio had had on me physically made me a good candidate to receive the optimum benefits from a new surgical procedure.  I never fought the idea, my parents didn’t either given they had five other kids to worry about and I quite enjoyed being with my polio peers.

This was screwed to my femur to fuse my left hip in a 3 degree fixed position
This was screwed to my femur to fuse my left hip in a 3 degree fixed position

I had over a dozen surgeries and only 30% worked the way expected.  At the same time they never made anything worse.  After eight years I was rid of my leg braces, had metal pins in half a dozen leg parts but it was a lot less than the 40 pounds of metal and leather that had been around my legs.  The picture to the left was the pins put into my left hip in 1964 which was removed two years later.  However to me it was all worth it because I was able fulfil my biggest ambition at the time, wearing regular “tight” blue jeans and the ability to walk barefoot with the rest of the hippies.  I was a person of simple ambition back then.  That was my Children’s Hospital persona.  Continue reading “A Time to Turn Around”