Blogging Against Disablism Day 2008
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.
I reckon chronic pain is like long-hours shiftwork. You can try to explain what it’s like to people who have never experienced it, and they can try to understand and say, “That really sucks”, but there’s a level on which they can’t understand. Not really. They can read and learn (yay BADD, it’s a great resource for able-bodied and people with disabilities alike). They may try to extrapolate from acute-pain experiences they’ve had, but the comparison just doesn’t work. It’s like the people who break an ankle, and from their few weeks on crutches claim that they “know” what it’s like to have a mobility disability. (Is there a comparison to be drawn with blackface here?)
They’re trying, and that’s way better than not trying (especially in terms of noticing and reducing accessibility barriers), but the experiences aren’t fully comparable. Being in pain constantly for an indefinite amount of time, having pain that escalates instead of healing, never knowing how bad it can get before you won’t be able to stand it anymore; these are features unique to the chronic pain and/or disability experience.
Which musing I guess is my way of saying “That really sucks.” I won’t that I know what your pain experience must be like, because it’s different from mine, though the pain-spoons side of things rings bells over here. Thanks for speaking out – the more drops in this big electronic empathy bucket, the better.
And of course chronic pain also makes one into a bubbly and outgoing person who doesn’t scare their friends off with snappiness at all. cough.
I had chronic neck pain for over a year until I recently stopped taking the medication that was, unbeknownst to me, exacerbating what I thought was just an unwelcome progression in the deterioration around an old neck injury. The degree to which that sucked was immense, but at least I could walk and move fairly well, although I certainly had to ration my pain-spoons as you said.
During my undergraduate days in the physiotherapy faculty, we had *one 24 hour period* where we all had to simulate a disability and go about our day and night using the mobility aids associated. Some of us had plaster casts and/or crutches, some of us had neck braces, some of had leg splints and canes, some of us had wheelchairs. It was illuminating, and worth doing as part of our study, but I know that most of us “cheated” in our own homes, even if it was only not grabbing the wheelchair orcrutches or neck brace when we got up to go to the toilet overnight. It certainly couldn’t give us the knowledge of a life of managing disability.
I really think chronic pain is an overlooked subject – and glad you wrote about it for BADD. There are quite a few people who have chronic pain who I know and they don’t talk about it like you have here – so openly. btw your insights about using a wheelchair are validating. Glad I found your blog!