Frankly, I don’t even know if I count as “disabled”. Certainly, the people who see me walking around in public don’t see me as disabled. They probably see me as fat and lazy, because I seek out a chair and sit down as soon as I can, or take the elevator even for just one floor, or even sometimes ask for one of the wheel chairs they keep locked up near the customer service desk. You see, what I have isn’t totally disabling, only inconveniencing.
I have knee pain. The pain is constant, but it increases when I do things (sitting with my knees bent under my chair is the worst, standing is the second worst, walking actually isn’t as bad as standing, although walking slower than my natural pace is pretty bad). I’ve had it for 2/3rds of my life now, and it gets worse with every passing year. It used to just be a dull ache, with very rare intense stabbing pains. The first time I got the stabbing pain I cried out and had to sit down for several minutes while I tried to figure out how I was going to get to my car, and at first I probably only got it about once a year or so. Recently the frequency of the stabbing pains has increased to about once a week. Every year I think “I can take this, but if it gets any worse I won’t be able to stand it”, and every year it gets worse, and I somehow manage to stand it. There are times when I think “I hope I die young, because after 30 years of ever increasing pain I’m not sure I can stand another 30 years of this.” It already nearly killed me once, because with the constant background of pain I mistook a burst appendix for trapped gas – by the time I bothered to see a doctor, I had gangrene in a couple of feet of intestine.
It constrains my life, and in some ways it defines it. Over the years, I’ve given up cross country skiing, orienteering, backpacking, canoe tripping, mountain biking, and probably other things I’ve forgotten, all because of the pain. I’ve lately taken up kayaking to try to recover some of that feeling of freedom, but I’ve discovered that my elbow joints are just as much traitors to me as my knees – the pain in them is increasing gradually and I wonder how many years I’m going to get out of them before I have to give up that as well.
The thing about pain is that you can make a conscious choice to accept it if there is something you absolutely must do, or even if there is something that you want to do so much that the resulting escalation of pain is worth it. That’s why I don’t consider myself disabled, but merely inconvenienced. Pain is like a bank account – I can choose to “spend” it, or I can try to conserve it. That’s why you’ll see me walking around Oshkosh, or why I was able to rough-house and play with my kids when they were younger. I “spent” that pain, and while I’m still making the payments now, it was worth it. But that’s why I’ll grab a wheel chair or find a bench to sit on at the mall – if I don’t spend it now, I’ll have that much more to spend on something worthwhile.
Sometimes I take a cane when I go places. It doesn’t help a lot, but it does seem to change people’s attitudes when I’m seeking out some place to sit down. Like I said, I need to keep my knees straight when I’m sitting. If I don’t have my cane, people trip over my legs and glare at me for daring to intrude on their space, but if they trip over my cane, they apologize.
My experiences in the wheel chair have been enlightening. I’ve had store clerks talking to my wife as if I were unable to make my own decisions, or ignore me and serve customers who were standing behind me. But the difference between me and someone who is truly disabled is that if I choose to, I can stand up and end the discrimination. I never forget the people who can’t.