I was in the middle of a Christmas event yesterday, courtesy of the Downtown Nanaimo Business Improvement Association, when an interaction took place that created an epiphany moment. Although it was a general public event there were a number of persons there with disabilities. However, unlike myself, every other wheelchair dependent person there had an “attendant”. For me the best thing about not having had an attendant was that I didn’t have to argue with anyone over wearing one of those reindeer headbands (the hair may be grey but it is still pretty waving, why mess it up with cardboard reindeer head gear).
Currently I really have no need for attendant care. I may one day, who knows. I do know there is huge money in taking care of the “disabled” and having attendants available beats the hell out of never getting out. One of the attendants struck up a short conversation with me. In that brief discussion I heard the old “aren’t you special” talk simply for being there on my own. I say old because if I had a dime for every time I heard that “aren’t you special” I’d be rich. I have heard that talk often and have learnt to ignore it. With that said these days it is beginning to resonate a little more with me.
I am by no means “special” and detest the concept of being an “inspiration” to others. I can be as big of a prick as anyone else and the idea of being inspirational solely because I have managed to develop my own independence has become increasingly repugnant as I age. I am simply me, good, bad or indifferent. However the concept of special is beginning to ring differently with me than it use to but in an entirely different context.
I have, in my life, heard more than once what kind of “special” women it would take to marry an individual with a disability. I’m now divorced. I’ve heard of how “special” I was for having had the strength of will to maintain employment. There was nothing special about that, it was based on the same desire to survive that anyone else faces.
I have also been told how special I must have been to attempt parenthood while living with a disability. Is that not the basic nature of all of us, to procreate? To have a child or children that we can love while maintaining our lineage. Again there is nothing special about that, in fact it is really the norm.
All of these “specials” are based on assumptions that come from a frame of reference that is “different”. Just because someone eats with chopsticks does not make them special or the fact that they sit around a communal plate on the floor does not mean they are special. They are adhering to their cultural norms.
I am not special because I grew up with a disability. You see me as special because you can’t really relate to “my” situation. And to be honest I have noticed that for many by sticking to the “you’re an inspiration” or “special” line you can avoid any meaningful dialect. Adapting to a situation does not mean you are special, it simply means you have enough flexibility to adapt.
So when I heard yesterday how special I was for coming out to this event totally on my own I just bit my lip. I was tempted to ask how much she was getting paid for bringing her group home client to the event (free events are mana from heaven to group homes) but I didn’t. There was a time when I would have. With that said free events are also mana from heaven for a guy on a very fixed pension package 🙂
As I get closer to 65 (62 of those years with the results of polio) I have had to adjust to that “special” reference. It is happening more frequently simply because I am living independently in the community. My epiphany was that in order to access any benefits that I may require, which seem to be in more need as my body breaks down, I may have to swallow my pride and dip into that “being special” psyche. That seems to be the only way to access any supports these days. If you don’t behave “special” all you get is the back burner.
There appears to be no encouragement to be independent in our society these days. Persons with disabilities appear to be worth more as a product rather than a productive member of the community. With the exception of ones own feeling of self worth there is no reward for having reached a stage of retirement where extra supports are needed.
Did you know it is easier to get credit with a bad credit history than no credit history at all? Supports for persons with disabilities are a lot like credit ratings. It is easier to access services when you have been on some kind of support program for much of your life (and that is no slam against any of those individuals that have required some form of support program to get through life) than it is when you have spend your life contributing to the social structure.
At the end there is no reward for being independent except for that which you hold in your heart. And there is nothing special about having made it to the finish line on your own. If there is then we are all special!
Have a very Merry Christmas all and more in the New Year (there may be more before that but definitely in the New Years).
Just one man’s opinion