I wrote, a while back, to respond to someone who commented that he couldn't see why disabled people often talked about the way we are restricted when he (someone who was non-disabled) thought we had as much 'freedom' and 'choice' as anyone else.
I said that he clearly didn't understand how difficult actually achieving the same 'freedom' and the same 'choices' was. It's something I (having been non-disabled) have had to come to terms with, and it's a radical difference.
As you know, I'm going to a concert at the Barbican on Wednesday. I've spent the last few days in preparation. I've been doing as little physically as I can get away with. I can't afford to stress my spine so that I will be either in too much pain to enjoy it, or to sit in my wheelchair to get to it. I ran out of sugar last night; and though there is a corner shop next door, I'm doing without. Why?
It's not that I have a sudden urge to lose weight. Rather the opposite, in fact, my GP has told me I have to gain some. It's because I dare not take the risk of losing my balance and falling down the steps to the front door, or tripping over the step into the shop. If I were to do either, then the probability is that I'll be bedridden until days after the concert.
Now, you (assuming you are non-disabled) have several choices. You may choose to the shop to buy more sugar; you may choose not to be bothered and do without sugar in your tea until tomorrow. I don't, if I want to be sure of getting to my concert on Wednesday, have any choice at all.
Now, a friend was going to see Timon of Athens tonight. She asked me this afternoon, if I'd like to go on the probability of there still being some tickets available. But I spent most of the last night in pain, and most of it and this morning napping rather than sleeping. I'm not walking very well, either. And it was some hours since I'd taken any morphia, so I was in pain again. Neither inclined me to want to have a shower, wash my hair, get properly dressed, get in my wheelchair and struggle on and off the bus with it. I was also a bit concerned, not having been from home to the NT in a wheelchair before, about how tricky it might be getting there. And, of course, I've been looking forward to the Barbican concert for months, and I don't want to jeopardise it.
She went to the NT early, intending to look around and get something to eat. An hour or so later, she phoned, said there were tickets, and she'd found a relatively easy route for the wheelchair that wouldn't be as tough going as I'd feared. And I was feeling a bit perkier since the morphia had kicked in.
So I had a 'choice' of whether to go or not. Except I didn't, really. It takes me longer to do things like bathe, shave, wash my hair and dress than it does non-disabled people. Say an hour at least. The bus that'll get me most easily and nearest (though I would still have to cross the Thames) can take an hour because of the diversions while they're building Crossrail. Getting ready takes us into the rush hour. So I have to allow for the first bus that comes along, and quite likely the second, not having room for me. Add another 30 minutes. Add the hassle of getting through more rush-hour crowds in Charing Cross station, which I would have to wheel through.
Result? It suddenly becomes very questionable as to whether I could get there, and up to the theatre, before the play started. So the 'choice' is decided for me. I don't have one. I can't go.
"Ah, but" . . .that confident non-disabled person might say: "You could choose to speed things up and get a black cab." Well, I could . . .But like most disabled people I don't have much money, and since I wouldn't have time to eat, twenty quid on a cab as well would mean I'd sit through the play and home again starving. Quite apart from the fact that the cab fare would buy me half my food for a week. The 'choice' may be there, but it's illusory. A choice you haven't the freedom to make is neither choice nor freedom.
So, back to the bath and washing my hair. By deciding not to go to the theatre (which was actually rather upsetting, because I suddenly realised I would have liked it) I can at least choose not to have a bath or wash my hair today. You, you non-disabled person, you, might say "Well, so what? That's a choice anybody can make."
But it isn't, in fact. I have to be sure I've taken enough painkillers in advance, or be relaxed enough, to be reasonably sure that before I do, I am not going to find myself unable to get in or especially, out; and reasonably certain I'm going to be steady enough doing either, or drying myself or my hair, not to fall. I knocked myself out and sprained my wrist very badly a couple of years ago as my legs gave way and I went crashing into the wash basin. I've fallen a few times since, but I've managed to grab something so there hasn't since (so far ) been quite the same catastrophe.
On balance, I decided not to risk it. Tomorrow, or Wednesday, I may feel safer.
Choices? Freedom? Really?
Unlike you (you non-disabled person, you) I don't even sometimes have the choice of what I would like to eat. I may not be able to stand (or sit) to prepare and cook a meal I would like. I may have to 'choose' something because it needs little preparation or is quick. Or I may have to take whatever is in the freezer that can go in the microwave for five minutes whether it's really something I want to eat or not. I cannot 'choose' to have a beer, or a glass of wine, just because I feel like it. I may have only half a glass of wine, or only water, with friends over dinner, when the week before I shared a bottle of wine and had a large whisky beforehand.
That depends on the amount of medication I've taken that day, and when I took it. If I don't make that calculation (and it's something that's now instinctive, something I do almost automatically) I could end up in a coma. If I was particularly careless and got it very badly wrong, I could die. I nearly did two years ago, when I was taking a slow-release drug I hadn't before, and I got the time when I thought it would have had its maximum cumulative effect completely wrong.
This advance planning, the preparation most disabled people have to go through to do some of the simplest things non-disabled people take for granted, not daily, but even hourly, is something which the vast majority of non-disabled people never see. If you see me in the supermarket, or the theatre or concert hall, or an art exhibition or even a nightclub, that, for me, was never a spur-of-the-moment choice or a happy-go-lucky chance. I may look as though it was; but my smile of pleasure is only there because (at least up till then) the planning and forethought, the 'risk assessment', too, if you like, has all worked out.
No comments:
Post a Comment