| Spinal Cord Injury I have one - here's what I think about it. |
| Interfacing with the World |
| Sex |
| This isn't supposed to be happening to me |
| Words, words, words - both fatuous and annoying |
| At the county fair. |
| Perpetual victims. |
I have a spinal cord injury. I acquired it at the age of 14, when I was asleep in the back seat of a car that crashed. I fell asleep as a normal fourteen-year-old; I woke up unable to move or feel my legs. I am now 44, so I have spent 30 years of my life as a wheelchair user. I would assume that to most strangers, that and only that is the sum total of my life. However, I am also many other things. For the last fourteen years I have worked full-time as a computer programmer for one of the two largest California banks. As such, I am conversant with, and interested in (to a point) computer-jargon and computer jokes. Before I was a computer programmer, I went to law school, and worked briefly as a lawyer, so I am conversant with and understand legal jargon as well. I have been married for 10 years, so much of my emotional landscape is consumed by thinking about male/female relationship issues, and with the issues that arise over time in a marriage. We have a seven-year-old son, so a large part of my mind is consumed with being a mother, and the deep emotional entanglements that this entails. I am also an avid (almost to point of being obsessive) reader. I recently started playing the guitar again, after not having touched it in many years; I also play a little piano. I am interested in politics, in language and linguistics. I have always loved math. I am witty and sharp-tongued; like my mother before me I do not suffer fools gladly. However, to be in a wheelchair is to have the world ignore the possibility of this complexity.
To be in a wheelchair is to be the constant recipient of weirdly-skewed social encounters. None of them are life-ruining, but the sum total of them is oddly disorienting.
I am waiting on line in a downtown San Francisco BART (BAY AREA RAPID TRANSIT) station. People bound for three different BART trains all get in the same line – if the next train that comes is yours, you move forward with the line and board; if it is not yours, you move slightly aside to let the people behind you know that you are not boarding this train. With regularity, while we are waiting for the next train to arrive, the person behind me in line will ask me which train I intend to board. This is not just idle, friendly conversation, as I am reading a book and am not inviting social contact in any way. So why does she need to know or care what train I intend to board? How is this information in any way going to be useful to her? I have not indicated that I need or want help; I do not have that confused or quizzical look that people have when they need help. On the contrary, I am assiduously reading - I imagine that I look as self-contained as it is possible to look. There is no reason for her to involve herself with me. However, the wheelchair has raised some need in her to be meaninglessly "helpful", or to be somehow worried that I won't know enough to or be able to carry out my proper role in the boarding dance. I am always stymied by the question – I don't want to answer, since I am offended by what I know motivates the question, and yet I know that if I am rude I will feel bad, and my questioner will be mystified by my unpleasant response to her well-meaningness.
This happens about once a week. I am in an elevator with several other people, strangers, in the 12-story building in which I work. The doors have been closed for perhaps 7 or 8 seconds; the elevator is already moving. If you stop and look at your watch you will see that 8 seconds is a long time in elevator time. At this point one of the other occupants of the elevator asks me which floor I want. He thinks he is doing a good thing – a small thing, but a good one. However, what this means to me is that he thinks that not only was I not able to push the button for my floor myself ( which certainly is true of many wheelchair users), but that I am sitting in the elevator without having my floor pushed, just hoping someone will offer to push it for me – that I am so pathetic I can't even ask for my floor myself. I suppose that if my samaritan had not made the offer, I would just be riding the elevator aimlessly until someone boarded who happened to have the same destination as I did. Again, the question, which I know is asked in utter well-meaning sincerity, stymies me, and leaves me with no comfortable answer. If I am ascerbic, I will feel bad about appearing rude; if I answer in a friendly way, I feel somehow diminished, as I feel that the question is offensive, and I do not wish to dignify it with a pleasant response.
We're as interested in sex as the next person. Acquiring a spinal cord injury does not make one's thoughts become ethereal and saintlike, and above such corporeal matters. It also doesn't make ones thoughts child-like, or below such matters, as it were. It leaves you right in there with everyone else, thinking about it all the time. I had my first sexual experiences at my rehab center. I was 14, the boy was 16, another patient. We were in love. We were two teenagers with an enormous amount of free time, and few adults to oversee how we spent it. We never did anything that could have led to my getting pregnant (if you catch my drift), but we did almost everything but. When the grown-ups around us caught a drift of what we were doing, I remember there were a lot of adverse comments, but nobody actually tried to stop us. Even at age 14 I was self-aware enough to know that what we were doing was extremely healthy, and life-affirming, not "bad". (I did manage to keep it from my mother. She was horrified when she found out I might have actually kissed the boy at one point, so I felt perhaps she would not like to hear about the rest.) (The boy's father on the other hand, did find out, and declared that I was a slut. As I was considered something of a goody-goody in my home town (a straight-A student who wasn't popular enough to get into trouble), it was actually quite thrilling for me to hear myself labelled that way. (But come on - the boy was 16, I was 14 - who did his father think was taking the lead? (He actually had to persuade me every step of the way, though I will say that I became a willing, one could even say eager, participant.)
It's shocking to suddenly acquire a spinal cord injury. One minute everything is fine, and the next minute, wham! you're paralyzed for life. Aside from being terrifying, which it was, it's also just so surprising. It's like it has to be some kind of bureaucratic mistake - "What do you mean, I'm never going to walk again? That's not supposed to be happening to me, you must have the wrong person."
It does bring you up short to have one of those things that are supposed to only happen to other people happen to you. I think we all go around feeling like we have a bubble of invulnerability around us which is supposed to keep those things that happen to other people from happening to *us*. I don't think this is a sign of stupidity, or insensitivity - I think it's natural, and it might be hard for any of us to get up each day and face the world without it. But when I had my accident, and my bubble was pierced, for a while I was surprised that anybody managed to get through a day unscathed. Suddenly it seemed like everybody should be having car accidents, and major injuries. (I don't mean I thought that it wasn't fair that it happened to me, and not others. I wasn't wishing bad things on other people. I just had seen how easy it was to have a terrible accident, and it surprised me how many people weren't having them.)
I also thought for years that my accident was a punishment from God. I know there are people in various religions who do believe an injury like mine is a punishment for what I guess must be fairly major sins. There are also some who believe that I have been chosen for some special purpose to have this injury, and that it's kind of a gift, not a punishment. But I believed I was being punished because right before we got in our car, I told my cousin and her husband that I thought motorcycles were too dangerous (they had just gotten one), and when they pointed out that people got into car accidents, too, I responded "Yeah, but you never think about those." Then we got in the car, and it crashed. I really, truly, thought for years that some force in the universe had been out there thinking "She thinks that? Hah! We'll show her." I was afraid for a long time to tell anyone I had had that conversation, like I would be blamed for causing the accident. And even though I know it's not rational, there are still things I'm afraid to say out loud, just in case.
A fatuous phrase used regularly by the news media, particularly television news, is "so-and-so has overcome her handicap", as in "The prosecutor in the Oklahoma City bombing case has overcome multiple sclerosis to become a federal prosecutor". I have heard myself described that way. I have a husband, child, house, job, friends - all the accoutrements of a normal life, so I have overcome my handicap. To me, overcoming a handicap would be not having it any more. When they say on the news that someone has overcome her handicap, what they really mean is that she has overcome their low expectations for her - ooh, gee, thanks.
Another usage I could live without, no actually, that I hate, is when they say so-and-so is a "victim of", "suffers from", or is "afflicted with", as in "Susan is afflicted with a spinal cord injury". Yeah - let's emphasize how much we view these people as victims, and not as normal people like the rest of us. Couldn't they just say "has"?
Two phrases that are commonly used are "confined to a wheelchair" and "wheelchair bound". I don't know anyone who could be described by these phrases who actually uses them or likes them. Style sheets that are put out by disability organizations for newspapers to follow usually have these phrases at the top of their list of what words not to use (followed by victim and afflicted, (see above)). I used to hate these phrases, and I still dislike them, and never use them, but I have heard enough friends who I know like and respect me use these phrases about me that I have come to mind them less, though they still sound sucky to me.
In this age of political correctness run amok the most laughable new phrase that has been concocted is "physically challenged". What the hell does that mean? All right, I know perfectly well what it means, but it sounds so stupid. As far as I can tell, this phrase sprang into being out of the brain of some well-meaning non-disabled person. Again, I have never heard anyone who could be described by this phrase actually use it, except as a joke.
My personal favorite word is "crippled". It's short, descriptive and to the point. However, this word is controversial, and considered to be almost the equivalent of the n-word by some people, so I only use it among friends. The actual "correct" words are disabled or handicapped, though I personally find both of them pretty unwieldy, and I get sick of them. The political movement people pretty much only use disabled, and that's the preferred word on the West Coast; in other parts of the country people prefer handicapped.
It's July 4. We're at the amusement park section of the Alameda County Fair in Pleasanton, California. I'm doing my mother thing of watching Gabriel while he's on a ride, and waving at him admiringly every time he circles around to where I am. I'm also minding my own business, as I usually am, when the ride operator decides he's going to mind my business with me. After eyeing me for a while he walks over to me with a big smile on his face and starts telling me about how Jesus can get me out of this wheelchair.
Now, maybe this guy had some new take on it that I hadn't heard before - I have to admit that I stopped him before he could go into details about how this was supposed to happen. (And it was not easy to stop him - he was bound and determined to tell me what he had to say, but I was also bound and determined that I didn't want to hear it, and eventually I won.) The thousand times I've heard this before the general methodology appears to be that I accept Jesus into my heart and then pray a lot. And I'm sorry, but it doesn't work that way. Not that I've ever tried it specifically, but if it did work, there would be no devout Christians in wheelchairs - there'd just be Jews like me, and various other varieties of non-Christians and atheists and agnostics. And if it really worked, it wouldn't be a secret that you had to find out by accident from a carnival worker - it would be major news, and they'd be teaching people how to do it in rehab centers.
A few weeks ago my husband Charley and I were in the kitchen making dinner, and we had the national news on on the kitchen TV. A feature story came on about a guy who had stepped on a land-mine in the mid-1970's, and had lost both feet, and some portion of his lower legs. He has now dedicated his life to doing political work to get land-mines banned and removed. The first part of the story was concentrating on showing his anti-land-mine lobbying, and I was thinking that the guy was pretty admirable, until they brought me up short at the end of the story by showing him at home with his family (wife and two small children.) The reporter asked him what has the hardest thing in his life currently, and he said "Seeing how hard it is on my wife to watch what I go through. And she has to help me up the stairs every night and put our kids to bed all by herself." And I thought "Yuck". I turned to Charley and said, "I'm sorry, but it's never even crossed my mind that I should feel bad for you because you have to watch me being me." And it turns out, of course, that Charley never does feel bad about having to watch me being me, so that works out pretty well. (Actually, he likes watching me be me, which is one reason he married me in the first place.)
So, what this guy is really saying is "Poor, pitiful me", but he's trying to phrase it as if it's not himself he feels sorry for, but his wife, so he won't sound like a whining jerk. He appears to have made his disability into the central tragedy which his family revolves around, and while his wife must acquiesce in this and must have bought into it when she married him, it's terribly unfair to his kids.
So then I'm thinking, since his political work consists of him going around and saying "Look at this terrible thing that happened to me", maybe this keeps him from getting past that feeling about himself in his personal life, or maybe he needs to retain that feeling about himself in order to do his political work (which I do think is valuable). But there are also people who like to wallow in always seeing themselves as victims, rather than at some point accepting their situations and just getting on with things.
Then we were wondering why he was even living in a two-story dwelling (it appeared to be a condo or a townhouse). We decided to give him the benefit of the doubt on that one, since economic contingencies can force you to take what you can get, and maybe that was all they could find. Maybe. But even given that, I thought that sentence about his wife having to "help him upstairs" was weird. What does he mean exactly? The only thing that makes sense is that he must do what I resort to on occasion when faced with a lot of steps - he must go up them on his butt, separately from his chair. This is not exactly elegant, but it works. There is just no way that he could possibly need physical help with this part of the process. I don't need any help doing this, and he must have more functional body parts than I do. The "help" his wife gives him must consist of carrying his chair upstairs after him. Charley and I have done this more than once (in fact, when I met him he was living in a flat on the third floor of a house, and that was how I got up there). But we have never characterized it as him "helping" me up the stairs. To us, it's me going up the stairs and him carrying my chair up, and it has no emotional content, and it's not a tragedy. It's just solving a physical problem.
And what does he mean - his wife has to put the kids to bed? At my house, putting our son to bed consists of getting him into pajamas (well, actually he likes to sleep in a particular t-shirt, so it consists of getting him into the t-shirt), and overseeing his teeth-brushing, and reading to him. I assume his kids sleep upstairs, and he doesn't want to have to go upstairs more than once an evening, or go upstairs for the night as early as his kids do. But why can't some or all of their routine take place downstairs, so the only thing that always fell on his wife would be tucking them into bed?
The guy just seems to be stuck at a personal level of viewing his life as a tragedy, and I have no patience with that. If he were only recently injured I would give him more leeway, but he's more than 20 years post-injury, and it's enough already. It's not that I think it's good for people to step on land-mines and lose body parts, and it's valuable to try to prevent this from continuing to happen, but at the same time he needs to deal with what's already happened to him with a little more matter-of-factness. In the long run, he would find it more rewarding than always seeing himself as pitiable, and it's a lot more dignified, too.
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