After passing the driving test for the scooter at Shopmobility, Joe and I were off to the mall. Soon enough, I understood the rigourousness of Steve in his taking me through my paces. The test involved me having to do a forward figure eight around two orange cones followed by a backwards figure eight ... doesn't sound difficult except the cones were only a few feet apart. It wasn't quite the speed or difficulty of a racing video game but it was certainly challenging enough.
As soon as I was in the mall, I understood why the cones were set at an impossible closeness. The scooter had to fit down narrow aisle and weave through tons of people. My power wheelchair has incredible responsiveness to command and can turn and manoeuvre in very tight spaces, scooters, the size of the one I was on, need much more space. I did manage to get where I wanted to go and buy what I wanted to buy with little enough frustration.
What was marvelous was the freedom of movement that the scooter allowed. Again to have Joe walking beside me, not labouring behind me was a wonderful experience. Too, I was able to carry all our goodies in the basket in front of me, we were able to chat freely and just enjoy being out.
Since Steve had brought up the issue of invisibility, since he had cautioned that I had to drive the scooter preparing for people to step in front of me, crash into me, or trip over me, we watched for it. Remember I am a very big man, and when on a scooter, I look like I got my drivers license from Barnum and Bailey. It's really hard to imagine someone not seeing me.
But what we noticed, really noticed for the first time, was something other than my invisibility, which we have experienced for a few years now. What we noticed was how incredibly visible Joe was when with me. It was like people were trying to figure out how we came to be together, was he an assistant, was he a friend, and a very, very few wondered if he was more. It was like they couldn't imagine what it would be like to be me so they wondered instead what it would take to be Joe.
Uncomfortably, I remembered the glances I got when I was a direct care staff working with people with intellectual disabilities. People would give me either a 'you are a saint' smile or a 'I couldn't do what you are doing' nod. I guess special people need special people ... oh how wonderous is the love that turns able hands to the work of God. Oh, my.
But visible or invisible, it didn't matter. We have long since left behind the need for the approval, understanding or acceptance of strangers - even daresay family and friends. Difference experienced or difference lived with requires a hearty sense of self and a powerful grasp of what is and what is not important.
Joe walking beside me - important.
Pretty much anything else - not so.
6 comments:
What I find interesting is that 99% of the people say "sorry" when I politely ask them to give me and my scooter room. I don't need an apology, they've done nothing wrong. Not sure why it's annoying-maybe it's the pity factor. On the other hand, small boys find me fascinating.
I enjoy your blog very much - your humour, observations, wisdom and appreciation have provided me with many enjoyable, thougtful or fascinated moments. However, I have just one bone to pick, and that's your occasional foray into guessing what others are thinking, from they way the look (at you, or Joe, or someone else) rather than what they actually do. You've sometimes posted when you've been incorrect in your assumptions about what someone was thinking, but I notice you continue to assume! I have so often found that I CAN'T double guess thoughts, that I try not to - and there are plenty of behaviours, both good and bad, to notice without trying to become a mind reader also. It's a small point, but one that's bugged me from time to time, so just thought I'd mention it. Mostly, I just enjoy your posts and appreciate seeing and thinking of the world from anothers viewpoint.
Those last two lines sum it all up...
Joe walking beside me - important.
Pretty much anything else - not so.
That is how it should be in any strong relationship.
jwg, if you were on two legs and you needed more space and you asked someone for more room, guess what? they'd probably say "sorry".
You know, comments like these have ruined me for normal interaction. Time was, I'd treat everybody exactly the same way - no uncomfortable shuffling, no deer-in-headlights looks. But now that I know that everything I bloody say or do is wrong, frankly I am paralyzed with fear and indecision when I see a disabled person. Oh NO, what if I have to step back, and I automatically say "sorry" and it's the wrong thing? What if I step closer to the wall, thus being guilty of rudely pointing out that you might need more room to get by? What if I DON'T give enough room and she thinks I'm one of those 'abloid' assholes who thinks the world revolves around them? What if I look up and make eye contact and they think I'm staring? What if I don't acknowledge them at all, and they think I'm "pretending disability doesn't exist"?
Sheesh.
Loved this two-part story - Steve sounds great and your orientation very helpful!
The line "how wonderous is the love that turns able hands to the work of God" is so deep. Gave me food for thought.
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