The Unexpected Legacy

“I have had dreams and I have had nightmares, but I conquered my nightmares because of my dreams” – Jonas Salk

I will never regret getting older. I know too many people who never had that privilegeIn 1952 Dr. Jonas Salk introduced the first polio vaccine.  He was so convinced of its effectiveness that he inoculated himself, his wife and their three children.  One of the driving forces behind his dream was the nightmare of Franklin D. Roosevelt, (FDR) surviving polio in 1921.  In his role of President FDR showed a nation what someone with a disability could accomplished despite polio.  In 1936 FDR established the precursor to the March of Dimes, the National Foundation for Infantile Paralysis.  FDR’s untimely death in 1945 kept him from ever seeing the results of Salk.

When FDR created his foundation polio was known as “infantile paralysis” due to the belief that only children were afflicted.  This was eventually disproven and poliomyelitis became the correct terminology.  In keeping with the times in 1939, Eddie Cantor rebranded the FDR’s Foundation to March of Dimes based on the song “Brother can you spare a dime?”.  If you listen to this song by Al Jolson it could be considered timely for todays political situations but I don’t want to deliver a buffet here so I will try to focus on the meat of my point.

With the massive epidemic hitting North America in the late 40’s and early 50’s Jonas Salk went to work and turned his dream to address his worst nightmare into reality.  Not only did Salk develop the first polio vaccine but he “donated” his discovery to society at no charge and avoid any major charges for the patent.  Fortunately the likes of Martin Shkreli weren’t around and patent law were much looser.

The vaccine was first used in the States in 1952 however Canada took another three years to approve it.  Paul Martin Sr, despite political resistance, finally had it approved for Canadian use in 1955.  Paul Martin Sr was the first official patron and supporter of the 1951 Rehabilitation Foundation of Canada which later became the Ontario March of Dimes.

Between 1952 and 1957 another 25,000 Canadian children contracted polio.  Shortly after approving the vaccine Mr. Martin, then Minister of Health and Welfare, made a promise to the parents of those kids (of which I was one) and the survivors of the epidemic.  That commitment was that no one who survived the epidemic due to the slow release of the vaccine (the years between 1952 and 1955) would ever have to worry about the financial hardships associated with living with polio.

This saved many families a lot of money and greatly enhanced the quality of life for so many survivors.  I survived but lost many childhood friends at a very young age.  Death was part of life growing up in a hospital and many of my “hospital family” never had the opportunity to enjoy an adult life.  A large percentage of those survivors outlived our predicted “best before date” and are hitting retirement.  The financial costs of the disease are still there but the the promises of support have disappeared.  Those supports, like so many of my childhood friends, quietly disappeared in the dark of night.  Whatever became of that commitment?  Where did the polio money go?  And to further muddy the waters, the current limited support programs for seniors, are measured with metrics that ignore the polio related costs.  This creates a very unbalanced system and increases hardships.  Wheelchairs, medical equipment, even accessible living has out priced the retirement income of many polio survivors.  Those extended health benefits that I use to take for granted no longer exist but the costs continue to climb.

I underwent over a dozen surgical procedures as a kid just so I could get rid of my braces and walk with sandals (it was the 60’s) rather than heavy orthopaedic shoes.  To be clear I am not a religious man (I am a man of faith but not religion) but if someone wants to cherish the belief that they will be rid of their crutches upon arriving in heaven who am I to take that belief away from them.

Today there are approximately 25,000 baby-boomers in Canada approaching or in retirement.  Those commitments regarding financial costs due to polio have disappeared and yet in retirement costs go up.  After a life time of education, labour market attachment, four different careers, marriage, children and community involvement those supports are no longer there.

The senior supports that do exist are based on your retirement income and not your retirement “costs”.  Unlike the Thalidomide survivors no class action suit has been launched by polio survivors despite the commitment made by the government of the day.  We are still fending for ourselves and refighting battles we thought had been settled years ago.  I live in a small City that regularly ignores the access standards of the building code to give developers a break.

That break comes at the expense of anyone that has mobility issues.  Roughly 70% of the Nanaimo rental market is automatically eliminated to me due to access issues.  61% of my current income goes to rent.  I am currently putting monies aside to purchase a new wheelchair cushion ($800), disability related costs are high and, despite many peoples belief, there are no programs out there.  I live in dread of that day when I will need to replace my wheelchair.

The Rotary have been doing an excellent job in eradicating polio and now that they are partnering with the Gates Foundation it can only get better.  With that said I have to ask what about the “legacy cases”.  Eradication is a lofty and worthy ideal but lets not forget the legacy.  No one seems to know what became of the March of Dimes funding for polio so I ask do Rotarians have a “legacy” program to assist those who survived prior to the vaccine?

Those of us who survived the last major North American outbreak are now hitting retirement.  Post-polio now has us refighting battles in a medical system that doesn’t even recognize polio anymore, after all it has been absence in North America for over fifty years.  That doesn’t mean the survivors don’t exist.

Polio is a “pre-existing condition” so I genuinely fear for my American counterparts, polio survivors.  With the current healthcare battle going on south of the border as a polio survivor to lose supports this late in life would be a travesty.  But then we are seeing the erosion of those same supports in Canada…

Later all…

About terrywiens

Politically engaged, defender of rights whether or not I agree with the situation, techno nerd and someone who believes in open dialogue as well as open democracy. Father/grandfather and polio survivor who has maintained his own independence all of his life
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