Adapting to Change

“Inside myself is a place where I live all alone and that is where I renew my springs that never dry up.” –  Pearl S. Buck 

I have lost my direction and with that my purpose.  Purpose has always been important to me and without it one can easily become selfdeprecation.  I am finding myself looking at things I use to enjoy, like nature, but all I see is how I can no longer participate in the enjoyment.  Rather than marvel at the beauty of the forest, delight in the vibrancy of nature or close my eyes to recall that wonderful aroma of the composting cedar creating new life, I see my life’s work for equal access rotting.

I no longer see a beach where many pleasant moments were spend in quiet retrospect filled with ocean smells and the quiet gentle lapping of the water on the shore.  I see a landscape I have to look at from some sidewalk seat (worse yet from the front seat of my car in the parking lot) while others enjoy walking hand in hand or with their dogs leash in hand happily enveloped in the solitude of the moment.

Better not bitterI have spend the last month putting a lot of thought into this.  I have always been a “glass half full” kind of guy but find myself quietly and over time becoming more of a “glass half empty” thinker and I was not raised that way.  I remember an impactful article by Edgar Cayce where he spoke of how challenges help define our character.  That challenges were there to make us better, not bitter and I find myself crossing that bitter line more often these days than I like to admit.  I think social isolation does that to you.  I don’t like being bitter so it is time I started weeding my own garden and eliminate those weeds that are over-taking my purpose.

The only person who can nurture that purpose is me.  Making other people my purpose has become a recipe for stagnation.  Stagnation is a form of defeat that slowly eats away at one’s confidence.  I have never been one to recognize defeat so it is time for naval gazing and stumbling around like a drunken Brit in a heavy fog to end.  Only I can do that…

Winnipeg 1955 March of Dimes Timmy with dad beaming behind me…

I successfully survived polio as a three year old and that has to count for something, many of my peers didn’t.  The picture (with my father behind me) was taken in 1955 at a Winnipeg March of Dimes fund raiser.  The foundation of my commitment to activism was built on the attention gained as a poster child.  For most of my life my purpose had been the advancement of access, not only to buildings but to attitude as well.  I am not my disability, my disability is part of me but it is not me and I have to convince people of that everyday.  It can be difficult to stay positive when so much I have fought for is being eroded today.

All the kids I grew up with were polio “survivors” and that title was burnt into your brain.  We were taught to be adaptive, innovative and independent.  We became activists through osmosis.  There was no inclusion, there was no access, there was just do or don’t.  If you chose “do” then you had to have a solution.  We were the shapers of access.  So when I see so news stories involving the erosion of rights I thought had been successfully won in the 80’s I have to speak up.

Montreal hosted the first National Wheelchair Games fifty years ago but now advocacy groups have to take Montreal Metro to court in their fight for equal access to public transportation.  In the States the hard fought for ADA is being eroded so I have to speak up.  Something as silly as discontinuing Barbie’s disabled friend Becky because it’s easier than making the Barbie doll house accessible (what message does that send to our kids).  Government policies and programs that are discriminatory in nature but we don’t even realize they are there until it affects us

I have reached an age where my purpose has to be the fight to maintain what advances I helped contributed to.  Fifty years plus and people still don’t understand access.  In 1980 I consulted on the development of William Watson Lodge in Alberta which has over 20 kilometres of wheelchair usable nature trails and yet I can’t get Nanaimo to take accessibility into account with their parks.  Haida Quaii has done fantastic work at taking one of the most secluded areas on the west coast and incorporate accessibility.  Both of these are examples of “the glass half full” and involved commitment from many sections of the community.  I can’t stop now.

Writing provides me with purpose but of late I have ignored it out of fear of upsetting the status quo.  Turns out the status quo is really quite fickle and contributed nothing to my quality of life.  If I want the advances made by so many strong advocates I need to keep my voice out there with solutions.  I can’t allow others to dictate how I live.  If I believe erosion is happening to gains I fought for I will speak out.  I will no longer cut people slack for ignoring my access and will be more likely to just cut them out of my life.  Many have already ghosted me which I will no longer make excuses for them.

Toronto74So I have redesigned my site (the design is still a work in progress) and repackaging some of my materials.  I can repackage since much of it didn’t take the first time around anyway.  Between the shrinking world of access and my own uncertainty I have forced myself into my own social isolation.  I can’t do that anymore and have to take steps to get back to that “glass half full” world.  That is where I am the most comfortable and to do that I have to quit worrying about what other people think.  So be warned I am invoking the “Sheldon Communication Concept” and the filters are coming down.  If you decide to personalize it, that’s on you…



2 thoughts on “Adapting to Change

  1. Terry –

    I think most of us with significant disability have periods of emptiness. I used to travel quite a bit, but as my body weakens It is just too difficult. Almost all of my male polio friends died rather young. I believe guys have a harder time coping with disability than the ladies do. Guys are expected to be “strong”. The guys I knew … at least many of them … got into drinking and drugs.

    Like you, I have been a disability activist. It was something that gave additional purpose to my life. Now it is harder. Some of this is because I don’t have the energy I once had. But it is more than that. It seems to me that legislative bodies have shut their eyes and ears to the needs we have, but are not being met.

  2. Thanks Richard and yes I fatigue much quicker these days but then I just turned 67 so maybe that is to be expected. I had my drinking and drug days but moved from that as I put other priorities on parts of my life. I really hadn’t planned on re-fighting battles I thought had been dealt with many years ago but apparently I’m wrong.

    I believe one of the reasons polio kids did as well as they did (huge numbers back then) was the “lack” of policies and regulations. The more regulations we throw out there the more interpretative services become. I still do a lot of individual advocacy for people and I do find the first answer from most service funders is “no” which then needs to be followed up with an appeal (took me 54 weeks and lots of patience to get a provincial program here to pick up half the cost of my wheelchair). I was too good at being independent and now people expect that without taking into account the beat up body and post-polio issues. Thanks for reading…

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