“In three words I can sum up everything I’ve learned about life: it goes on” – Robert Frost
CONFESSIONS – I have been around for a long time and I have seen a lot of change, some good, some not so. But what has been consistent is the descriptive labelling that goes on however changes regularly. These rebranding exercises seem to follow a ten to twelve year cycle and are often made to due to “political correctness” as an effort to avoid correcting an actual issue.
When I was 5 (1955) I was a March of Dimes poster child and we were referred to as “crippled children”. Although “cuteness” had its benefits, with adulthood you begin to realize terminology often creates inadequate optics and is actually demeaning but came with good intentions. Did I know that? No. Today, the term “crippled children” has become an unacceptable term but I could give a damn. I am ME.
When I was 17 (1967) I was a member of the Alberta wheelchair sports team attending the first national wheelchair sports games in Montreal. I was referred to as a “polio survivor” who had overcome “a life of challenge”, para’s were those “victims of tragedy who had overcome great odds to get here” plus amputees who had “taken on the challenge of learning to do twice as much with half of the (required) limb”. My point here is that virtually no acknowledgement was given to the fact that “we” didn’t allow a less informed community to dictate what we accomplished. Regardless of a labeling issue we, as “survivors”, focused on the “ability” not the “dis”. My biggest “dis” ability was the usually well meaning but rarely understood attitudes of the general public. However, at that point, I started getting really tired of “regulatory rules” that work from “dis” rather than “ability”. By 1980 I’d reached a point where I could give a damn about policy makers and educators who felt the need to “wordsmith” descriptors for disability without actually saying “disabled”, in my mind I was just ME.
When I was 25 (1975) I was now being referred to as a “disabled person”. In hindsight that term was the early seedling of political correctness and considered a step up from “cripple children”. This was all pre-Charter days (Canada, 1982), the Americans with Disability Act (ADA, 1990) or other legislation/policies that “protected my right to be autonomous”. I didn’t need others permission to be ME however the Canadian decade of regulations and policy took off in the 80’s. Again I didn’t give much of a damn, I was ME.
By the time I was 35 (1985, post Charter) I had settled down after realizing, contrary to the healthcare prognosis of the day, my best before date was no longer an approximation based on science, not just ideology. As “cripple children” in the hospital and the death of other kids (we lived in the hospital in isolation, parents visited twice a week) our life span was projected as “short”, twenty-five to thirty years post trauma (onset of condition) life span. However advances in healthcare and technology changed all of that. Bang, those damn disabled are going to be around longer than anticipated
And then “political correctness” exploded and labels became a means to separate and divide thirty years of work within the non-profit sector (and I hate that term) working towards much more collaboration than in the 60’s. Since there was really no (or very few) regulations directing the disabled community, the term “polio” disappeared and I became “mobility impaired” and I still didn’t give a damn, I was ME.
By the time I was 45 (1995) I was a “person with a disability”. Yep we had come a long way since 1975 and all it took was the rearranging of nouns and adjectives. Life should be so simple and by that point in my life I had become so use to just “settling” that again I didn’t care about the terminology, I was just ME.
By the time I was 55 (2005) I was “architecturally impaired” and everything could be dealt with by a curb cut or a ramp. Again I didn’t give a damn because I was ME. With that said the ME of 2005 was more screwed up than the “polio survivor” of 1967. Post-polio had finally caught up with me and I was discovering what having a “disability” really was. Prior to PPS it had just been ME because I DID. The wheelchair changed my life in so many way and I hadn’t prepared myself. I began to become every title I had been labelled with in my life time.
Now at 67 (2017) I am an Island Health “case file” receiving some support services from the local health authority I don’t really qualify for (or need or want) but have to accept A and B in order to receive C. That was the way supports were handled, labelling and coding. I was no longer ME, I was a set of codified numbers that dictated what I could or not get based on the number of “tick boxes” a case worker could check off. And now with this 64 year condensed history version I find myself subject to the whims of a service based on labels. In order to move forward I am now subject to the labeling policies of our current local health system. Based on their definitions, their service plan was the “Primary Goal of Service” was to “Teach/Encourage Independence”. What the hell did they think polio survivor had spend their life doing?
Now I’m just that “cranky old man” that some community care worker has to go see at 10AM everyday (except Sunday), which is fine because that’s ME! And being ME means fighting my own jaded perspective of 60+ years of promised changed. I am back to the days of that “crippled child” and have again become a “product” to keep health industry going (like they need help). It has taken me 64 year to accept the fact that I am totally responsible for the outcomes of my success so fight on I will…
The Travelled Road
We grew up believing we can turn around,
Based on the path that travels the ground,
But the path of life is a one way street,
And we must deal with the souls we meet.
There’s no turning back to change the past,
The experience we have lived forever last.
There are other souls on life’s long road,
Carrying their memories as part of their load,
We meet these souls along the way,
Some move on while others stay,
What connects us to those so near?
What divides us from those we fear?
We travel long on the road of life,
Findings our joys, surviving our strife,
Meeting new people and making new friends,
Those special few who stay till the end,
Experiences shared make us who we are,
The road of life goes on so far.
Terry Wiens – May 2006