Independent Living

Declaring independence isn't quite as easy as I thought. Well, declaring you intend to be is one thing; achieving it, relying as little on others as you can if you're using a wheelchair, turns out to be rather harder. But I'm not the only one to discover that.

A few weeks ago (I was on crutches that day, not on wheels) I tried to get some people on a rather crowded bus to shift out of the wheelchair space (or do I mean 'buggy space'?) so a young woman in a powered wheelchair could get in.

Blank incomprehension. The driver's efforts to get people to move didn't come to anything either. So she ended up parked sideways on, instead of safely against the backrest the way you're supposed to. I've had the same problem a few times, and you can't seem to get the idea across that if the bus stops suddenly, it's their feet you'll be taking off at the ankles. . .

However, we got talking, and she said when she got her wheelchair she thought it would make her more independent. She'd be able to get around more, without having to rely on her husband to push all the time. I said I'd put a motor on mine for the same reason.

"But," she said, "it didn't make me as independent as I thought it would. If I want to go much of a distance, I've still got to get my husband to come with me, so he can push when the battery runs out . . ."

I've hit the same problem. Well, not with a husband, obviously. According to the specs, the motor on mine should do ten miles. I don't know how, though: perhaps only if most of it is downhill? So far, it looks as though it probably won't last much more than half that.  I got that motor second-hand, and had to get a new battery for it; I ran out of power after less than three on the old one. And, of course, just at the point where the rest of the journey home was all uphill.

I'm luckier than my fellow bus traveller, though. She has rheumatoid arthritis which has affected her arms, and she can't wheel herself. She said, actually that some times she can't grip the joystick that controls the motor either, and has to nudge it around with her fists.

Thought for designers, here: every laptop has a trackpad. Why hasn't someone come up with something similar for wheelchair users that they don't have to grip?

Anyway, like her, for the moment, my happy thoughts of trundling along on my own all around London and getting to places I haven't been to for years because I'd have to walk too much either to get there or once I got there, and walking gets painful after a couple of hundred metres, are on hold.

At least until I work out how far that damn battery will take me. A friend suggested I simply rode around the block until the battery died to find out, but I already know what the surrounding scenery looks like, and that sounds a very boring exercise indeed. So I'm pottering about locally in different directions, with a cautious eye on the hilly bits and bus routes, so if the battery runs out on me, I'm not faced with the wheelchair equivalent of climbing Ben Nevis to get home.

I really hadn't understood until last year how strong you need to be to wheel even a lightweight wheelchair (even with an equally lightweight 'Squirrel' in it) even a kilometre.

It's tough. A lot tougher than I thought before I had to start doing it myself. Unless you have the sort of biceps marathon wheelchair racers have. And developing those weightlifting in a gym ain't within the range of possibilities for someone with a damaged spine like mine. It's just going to have to be practice. And aching arms. And I used to think I was reasonably strong for someone rather slightly built.

I could, I suppose, somehow store a spare battery under the wheelchair somehow, but with the motor and battery fitted, I have a wheelchair that already weighs twice as much as it does without. Those lead-acid batteries are heavy, man.

But Boeing gave me an idea. No, not the one about carrying a small portable fire extinguisher in my cabin baggage if I ever fly on a Dreamliner. Just about lithium batteries. They're generally smaller and lighter, I argued to myself. So, one would be ideal to stuff in the little bag on the back of my wheelchair to use as a kind of reserve fuel supply. After all in the days when I drove a car, not a wheelchair, I had a car that had a little reserve petrol tank tucked away under the boot.

Independence, however, as Ben Franklin, or Thomas Paine, or maybe George III, probably said, has its price. In this case, a 12V 17AH lithium battery (nice and small and light) with charger, a mere £150. And that was a special offer . . .Not sure how far it would take me, either. Apparently they're meant for electric golf trolleys. (I thought they were powered by human beings called caddies?) And they will last for 18-26  holes. I have never played golf;  nor had any interest in it. Except for taking a short cut across a golf course every now and then at night to get home quicker at one time.

(I gave that up after falling into some kind of pond in the dark. I'd always thought golf courses had holes in the ground full of sand, not bloody water.)

So I wonder how far 'eighteen holes' is? Haven't golfers heard about metres and kilometres? How long is one hole? I thought it was only a couple of centimetres. At least that's what I remember from being a kid on a putting green. I'll need to get a bit further than 52 centimetres on one battery. That wouldn't even get my wheelchair up a bus ramp.

Could be good in winter, if these things get as hot in proportion as my laptop battery does, though. I'd have an inbuilt heater. But would I need to clip a fire extinguisher to my wheelchair just in case it did a Boeing on me?

Anyway, a hundred and fifty quid? I don't have that sort of money to chuck around. I'm not a golfer. And any more of this government's damned cuts, I'll need that. I'll be scrabbling around down the back of the settee looking for stray five pence coins, let alone a tenner.

Independence costs, doesn't it? More than I ever imagined when I had more of it.

My Space? Or Your Space?

When I first saw the new 'advice' for buggy-pushers a few months ago, I thought it was rather nice us wheelchair users were being looked after. I was a bit ambivalent as to whether it was really necessary, though.

Yes, I've been stuck at bus stops having to watch two or three buses leave without me, either because there are already one or more buggies in the wheelchair space I need.  Frustrating for me; for a lot of non-disabled people, something, I guess, that would lead quickly to an outbreak of 'bus rage'.  But it's something we have to take phlegmatically. No bus-driver is going to chuck a mother with a baby in a buggy off a bus to let me and my wheelchair on.

I've shared my wheelchair space with them. Once I'm in and safely parked, that's OK by me. Just as long as they're willing to move out of it so I can maneouvre my wheelchair out and off the bus.

That, by the way, like getting into it, is a little trickier than people might think. If most drivers had to do that sort of to-ing and fro-ing into a parking space, while constantly risking running over four or five people's feet, they'd soon start complaining. You wheel yourself in forwards, you see; but you then have to turn and back into the space so your wheelchair back rests against that vertical backrest they put there that people lean against so they can have comfortable long conversations on their mobiles.

It is really annoying when you have to explain to people like that who won't move, that the bus driver can refuse to start until I'm safely stowed against it and got my brakes on. And it's no good looking at me resentfully for needing their cosy standing place; they'd be (and a few times this last few months have been) a damn sight more resentful if I delayed their bus journey any longer than I already have while they wait for the ramp to come down and retract again.

But they are, mostly, open to persuasion, and I tend to put down their sometimes initial obstructionism simply to not understanding that my wheelchair can't bend round corners. Even so, I've skinned my knuckles on the grab rails a couple of times when people won't even shift their legs and feet, let alone actually stand up for a minute to make it easier to get in.

But it's the buggy owners that really have become a nuisance. And it's sometimes not even buggy owners with babies in the things, only shopping. (And sometimes, it's real shopping trolleys in the way.) To have to ask. let alone occasionally actually beg) someone to move either of those out of the way when there's completely empty luggage space up front, is immensely irritating.  It even gets to look like and sound like a confrontation, sometimes. Why, I don't know. It ought to be simply a matter of common sense.

There was an example yesterday. But I'd better explain quickly why it happened to someone else in a wheelchair, and not me in mine. I had one of my regular epidural injections into my spine just over a week ago, so, for a few weeks, until it starts wearing off, if I only have to walk short distances between buses, I can use crutches.

That trip started well. The bus was full (except, of course, for the woman who was sitting in one of the 'priority seats' at the front with her shopping in the other staring blankly and deliberately ahead refusing to acknowledge that anyone else might need to be as comfy as her shopping). But, as I settled myself against the wheelchair backrest and got a good hold of the grab rail, another offered me her seat. So thus it was I was sitting in one of the seats facing the wheelchair space, as three other people crowded into it.

At which point, the driver let the wheelchair ramp down, to let in a young woman in her wheelchair along with her young daughter. Only, of course, for her to come to a halt with people crowded around her so she couldn't get in. I asked people to move; I explained  that a wheelchair had to go against the backrest. The three there did move, eventually; but they simply moved into the aisle and wouldn't budge enough so the wheelchair could turn round.

And then . . .a woman raced her buggy up the ramp and pushed it right up to the wheelchair, driving it over my feet and knocking my crutch awry as she went. The bus driver told her there wasn't room, wheelchairs had priority, and she'd have to take her buggy off. She shouted at him and glowered at both the young woman in the wheelchair and me. We were lucky, in a way, because the driver  had obviously had enough, had realised he had some damn stupid (or damn stubborn) passengers, and set off even though that wheelchair wasn't 'docked' properly.

Even with the brakes on and properly placed, if a bus stops suddenly you can still almost take someone's feet off at the ankles: it's happened to me and the only thing that stopped my chair breaking both a passenger's ankles was me being able to grab the rails with both hands and hold on hard as my chair slid towards them.

Which the young woman I'm writing about would not have been able to do. It turned out, as we got talking, she suffered from severe rheumatoid arthritis, and wouldn't have the kind of grip or strength in her arms I can employ. She was actually relieved; she told me that she's actually been told to get off a bus by the driver more than once in the same situation. There's something pretty wrong there, isn't there? To be blamed for the intransigence of other people because you are disabled.

I thought, once, we weren't going to see that kind of thing, that kind of implicit blame game—"Your problem being a cripple, sod all to do with me, why should I give a fuck?"—any more. But now qfter the last year or so since I had to start using a wheelchair much more often, that looks like just another illusion to be dispelled.

She had a motorised chair, she said, because, apart from her condition not allowing her to wheel herself about any more—and you wouldn't believe how much strength that needs, unless you remember those Paralympics wheelchair racers' arm muscles—she wanted to be independent and not have to rely in her husband to do the pushing all the time. "Except," she said, "when things like this happen, it turns out I can't be as independent as I thought."

I recognised the disappointment in her voice. I've motorised mine, very unofficially, really in the hope I can get further on my own than I would be able to just using muscle power. I got (like her) a bit fed up with having to arrange little trips in advance with a friend; and what do you do if you want to go somewhere on some day, and she doesn't?  We share, fortunately, a lot of interests; but some we don't. And she has to work when I don't want to have to stay at home, or don't want to do something or go somewhere else, just because it's closer to home or easier.

You see, I hope, what I'm getting at? OK, wheeling a small child around in a buggy might be a bit  restrictive for you. But in proportion, nowhere near as it is every day, every hour, for us. Is it really that much to ask someone with a buggy to put their child on a seat or on their lap and fold it up to give me my space? Or wait just for the next bus, when I might have to wait for the third or fourth?

After all, in proportion to the number of people with buggies you see travelling on buses, how many wheelchair users do you see needing 'their' space? We are, I've noticed, beginning to use buses more, but how many buses do you see with a wheelchair user in them? One in fifty? One in a hundred? We are not asking you to cause yourselves much inconvenience, are we? Or that often?

And we—even those who can stand or walk a little—would find it far, far harder to fold a wheelchair up and haul it up onto the luggage rack than someone would a buggy. If anyone wants to take me up on that on a bus and try it, good luck to them.