Roulette Wheel

Selected for the Design Museum 2013 awards, wheelchair wheels that fold flat (or oval, anyway) look like a good idea. Though I've not (yet) entrusted my own folding wheelchair to a airplane hold, after the experiences of some Paralympians last summer, I think I might just stick to trains.

Yet another idea from those very inventive London design students. And I salute the cleverness. But . . .you need to be a winner at the tables to be able to afford them. According to the Morph website (the company that's selling them) they come out at 950 US dollars each!

Somehow, I think, if I have to put my wheelchair on a plane, I'll see if I can borrow a drum case from a percussionist mate to keep my wheels from getting bent into an oval by accident rather than design.

Now That's What I (Don't) Call Style . . .

Supposedly, building this. . .device . . .took its designer 'all over the USA'. I can't think why. UK wheelchair users will, no doubt recognise a bog-standard hundred and fifty quid basic chassis to it.

Plus a bit extra for the hood off a buggy, of course.

Good god. All that money . . . when she could have got one of these.

Or got a bit more up to date, and maybe got one of these:

Not to mention my own fave carbon fibre one, of course:

The green chair I found on a 'designer' website which I damn well won't link to. That's because the article was titled: "Wheelchairs bringing a ray of hope in bleak lives of physically disabled"

Bloody hell. Once upon a time as a sub-editor I probably wrote thousands of headlines. I have to admire that one. It's beyond my skills to fathom out how it could be any more offensive. Well done.

Anyway, the wheels there are only design concepts, I suspect, and are probably all impracticable.

Faith, Hope, and . . .What was the other one?

I had been congratulating myself. I happened to mention to a friend the other day that I hadn't been pestered by any evangelical Christians for a good while.

You know the kind. They accost you in the street explaining how your life will be so much better if you trot along with them and engage in a lot of joyous shouting and generally sublime cotton-woolly good feelings about each other. Or God. But mostly about God.

If you're disabled, though, they always have another tack. They have a cure for you. It doesn't matter that they (of course) haven't the faintest idea why you're disabled, what the disability is, how it affects you, or how you live with it. I used to wonder why they never asked, but of course, none of that matters. They're not interested; and they are not interested because that would mean actually engaging someone and stepping, just for a few moments, outside of the tiny individual-sized narcissistic bubble they inhabit.

They are utterly confident that a few words will fix all. Not just any words, mind you, not even your own, but theirs.

So there I was, limping along on my crutch, feeling quite happy that it was, at last, moderately warm, dry, and sunny, and on the whole life was pleasant. Until Ladbroke Grove Tube station.

"Hello, my name's Francois," he said, getting rather closer to me than I generally like: in London, or any city, I suppose, someone getting within inches of your shoulder is at the very least, about to beg money, a cigarette, or maybe try to pick your pocket. I was prepared for any, but I was actually expecting to have to refuse to give him a ciggy.

(Why do people beg from me so often? It's a kind of inverse charity, I've come to suspect, since it doesn't happen to my non-disabled friends with anything like the same frequency.  Because I'm obviously disabled, in a reverse of normal expectations, they seem to assume I will be more charitable to them than anyone else. And give them money for the bus fare, the tube fare, a parking meter, or cigarettes. And these days, the beggars usually look better able to afford any of the foregoing than I actually can. So I refuse. I don't like being taken advantage of like that.)

"I can help you," he says, getting in my way so I miss the green light at the Pelican crossing. I pause, a little taken aback. As you'll have gathered, I'm more prepared to hear why I should help someone else, not the other way around.

"I can pray for you," he goes on. "And that pain will go! Just like that!" (He waves his hand, and a startled bus driver slows at the lights.) I've heard this before. I used to hear it around here every couple of weeks when I stepped out of my flat. How he knew I was in pain, I can't tell. As it happens, I was, but generally it doesn't show, and I'd just called at a friend's flat who is well attuned to my ups and downs and usually mentions it if it does. Apart from that, I'd knocked back some morphia not long before, so it shouldn't have shown anyway.

I wondered, of course, what his approach would have been if I'd been in my wheelchair? He would, I've no doubt. have been even more confident that he could have helped me fold up my wheelchair and walk. Since, in fact, that is possible for me—but, of course, he wouldn't have known that, and wouldn't have asked—I could have provided him with a rather startling example of the power of prayer.  For a moment I rather wished I had come out in my wheelchair instead of relying on painkillers and crutches to walk instead.

It would have been interesting to see his face. And what the consequences would have been. Would he have yelled 'Hallelujah' and rounded up the other passers by to bear witness to the miracle? Would I have been dragged along to the evangelical church as an example?

I thought of explaining some medical facts of life; that I was an atheist, so I could hardly see how any prayerful intercession with a non-existent deity could be at all effectual. But I've learnt from experience that others' beliefs don't matter; only theirs, and their confidence in them. I thought also, of asking if he had, say, ever broken an arm, or leg, or had appendicitis, and found the pain disappearing through the intervention of nothing more than a short prayer. But I've learnt from experience also that someone like this would claim exactly that.

Or they would offer up the mantra that suffering is God's will and fortitude bears away all pain. And it ennobles you. The latter being something I've heard from other than Christians as well; and long experience, not just as someone who has, and does, suffer extreme pain, but who's watched people do so as a nurse,  has never convinced me there's any truth at al in it.

While all this sprung to mind, for all the reasons I've suggested, it would have been a waste of time and breath uttering it. So I said, rather sharply (and possibly thereby proving that pain—or no doubt from Francois's point of view, atheism—can in fact make you rather short-tempered and less than noble and forgiving) that he didn't know what he was talking about, and to get realistic about it.

I was going to say "Get real", but I do hate that phrase.

At least, as the lights changed and I scuttled across the road, he didn't follow me as I'd expected. "That," I thought, was a display of 'faith' alright; an example of forlorn hope, too; but where I wondered, since like all troubles these come in threes, was the charity?

'Charity' (in the sense of practical help) not something these people at much good at, I think. Even when they offer any, they so often expect their reward not to be in heaven, but in your acceptance of them and their ideas. That you should reward them, in fact. I can't forget one who started off offering to push me around Tate Modern in my wheelchair, who grabbed it, quite unnecessarily, and pestered me with the same spiel. I had  to flee to the loo, and if there hadn't ben a queue for the 'non-disabled' one next door who gave him some odd looks, he'd have followed me in.

Fortunately, that must have embarrassed him. even though these people seem to find that very little does, or I'd have had to hide there even longer than I did. There really aren't enough public loos, especially wheelchair-accessible ones, in this part of London to hide from these people in, I've just realised. And would they be charitable enough to give me the twenty pence to get in, I wonder?

Full of the Chablis of Human Kindness

I'll explain that later.

First, after being practically smothered in kindness by the staff at the London Colisseum which I went to see Sleeping Beauty on Thursday, I've ben wondering if one can have too much kindness . . .

It all started when a friend got an offer for half-price seats a few days before, asked if I'd like to go, and I said yes. She's just—rather late—discovering ballet; I'm not actually all that keen on classical ballet, I always preferred contemporary dance. Not that I've seen much of that of late. I think it's because I've feared seeing all that athletic dancing about might bring back too many memories of what I could do before I got crippled.

I was (you can believe me or not) actually a very good dancer. Discos, though, not princes in palaces. Actually, sometimes, I suspect I might still be a much better dancer than a lot I see in discos these days. Either on crutches or even in my wheelchair. Actually, I did feel some regrets watching Sleeping Beauty. Though not as deeply as I feared. After all, I thought, I never could really leap a metre into he air and scissor my feet together at the top of the jump. Well, not consistently reliably, anyway.

I was a little more worried because the afternoon before the performance, I'd had an unexpected bout of pain that lasted off and on, and despite the painkillers, for a good eight hours and left me hopelessly lame and having to use two crutches to get even from my bedroom to the kitchen, and having to 'bum it'   up and down the stairs to my bathroom. I don't much fancy doing that in public, so I decided I'd take my wheels to ENO.

Not done that before, so I phoned and asked if I'd be able to park my wheelchair somewhere outside the auditorium. (Mercifully, our seats were on level ground, I didn't have any steps to get to them.) Answer, 'yes', no problem. First obstacle surmounted: most public venues are happy to either find you somewhere to park it, or have someone who will do the disability equivalent of 'valet parking'. Only they don't, neither at the Albert Hall nor the Barbican (and not at ENO either), ask for tips for doing it.

On the other hand, they don't give my wheelchair  a quick polish and empty the ash tray either, but you can't expect everything, can you?

Well, I got there, and everyone was kindness personified. Did I need to take the wheels right up to the seat row? If so someone would take it out and park it at the refuge point by the lift. Would I need the loo? If so, there was a disabled loo just to the right behind the lift on the floor I was going to. Which floor would I like the lift to go to? The cloakroom? No problem. Was I coming back to the bar or going straight up to my seat? Someone would radio up (or down) so they'd be ready if I needed help. The cloakroom (I'd forgotten) is actually tucked away up a short flight of steps. Would I like, an attendant, with radio in hand asked, him to take my coat to it? Thanks, but my friend would take mine along with hers. Oh, and did I know where the disabled loo was? Yes, thanks; my friend will take me in and hold it for me while . . .no, don't be unkind.

Back to the bar where we ordered interval drinks. Barman points to a table, says we'll reserve that and put your drinks there so your friend can get his wheelchair in easily. By this time, I should have been feeling thoroughly pampered, but actually I was beginning to feel slightly embarrassed. As I've said before, I really prefer people not to notice I'm disabled (though admittedly, that's a hard trick to pull off in a wheelchair) and all this kindness and the offers of help were getting a bit too much. I could get used to it. And imagine the outrage you'd feel if somewhere, later that night, or the next day, people weren't that kind and helpful. As sometimes, they aren't.

As we discovered at the interval. Our table didn't have our name on it; it didn't have our two glasses of Chablis on it either. It did have two people sitting there who ostentatiously failed to observe a somewhat upset Squirrel in his wheelchair trying to espy two lost full glasses of Chablis anywhere.

The barman came to our help—one of the advantages of being that night the only wheelchair user. (Do others have the same suspicion that all that energetic prancing about might bring back unwanted regrets, I wondered?) He said he thought someone must have stolen them, it having taken Squirrel, of course,  considerably longer to get even the relatively short distance from seat to wheelchair to bar than most of the eager drinkers. We were surprised. Well, shocked, really. It's never happened to us at Covent Garden. "You'd be surprised," he said darkly, pouring us two glasses of white wine. Well, yes, we were. "I'm really sorry," he said—and gave us our money back!

So that is why on Thursday night, the Squirrel cup overflowethed (is that really the past tense?) with the  Chablis of Human Kindness at the Colisseum in London.

That is, until I tried to park my wheelchair in its spot by the lift. And nearly missed the start of the third act. Because there was a rather peculiar woman, dressed mostly in red, using that corner like a bag lady.        She'd emptied half the contents of a large handbag and two shopping bags there, and didn't sem to grasp that it was my 'parking space'. Any more than your average SUV driver seeing a double yellow line or any plebeian vehicle within two metres of the door of the shop they want to flash their platinum credit cards in.

As I hopped into the auditorium, I looked back, and it dawned she wasn't there for the show.  She hadn't (as I'd thought at first) been hunting for her ticket. Though in fact, she would have known that they don't ask you for your ticket after the intervals. She'd settled, bag and baggage, into an armchair just outside the bar.

Was it her, I wondered, who'd hoovered up our Chablis unnoticed amongst the first rush and dimmed the warm glow of kindness Squirrel had been basking in? She had, I recalled, as I sat down, sounded less than sober. As well you might if you'd just gulped down two large glasses of white wine in a hurry less than fifteen minutes before.

It was a lesson, I thought. The wine of kindness might flow strongly in the veins of the front-of-house staff of ENO; but it still runs vinegary in some people.

Though not, mostly, that night.

Excepting the woman with an enormous two tier buggy full of shopping who didn't even thank Squirrel for folding in his footrest to let her get the damn thing in. It was a few minutes before I, my friend, and the Spanish girl next to her, after peering at it that became less and less surreptitious, that there were no children in it, on either tier quietly suffocating. Just shopping. What is it with these buggy drivers? I've noticed that TfL must be getting pissed off with them too. Some buses, I've noticed, now have big notices telling people with buggies to fold them up if the wheelchair space is being used. But some of them are so big, it'd probably be quicker for me to fold up my wheelchair. 

And while I'm at it, does a two-seater buggy really need cup-holders attached to it on each tier? Hmm . . .I wonder if I could fit one to my wheelchair? A cup-holder on one side, and a wine bottle holder on the other? I've seen vans in France fitted with both . . . Maybe I could fit a waterheater thingy like you plug into a cigar-lighter in a car? I could maybe plug it into the motor's 12V battery? Have a hot tea stop every now and then in the cold weather . . .

This government's plans for us being what they are, maybe I could even make a small mobile drinks business out if it? A holder on one side with a stack of disposable cups like they have for water coolers; sachets of sugar and milk in the little pouch on the back? Have to think where I'd keep the water, though. A plastic tank under the seat? Get one of those clip on trays and sell sandwiches as well, even? 'Squirrelbucksmobile' here we come. Just remember, I thought of it first.

But that aside, all the bus drivers seemed to have taken pride on Thursday in stopping very neatly right opposite my wheelchair at the bus stops to let the ramp down so I didn't even have to manoeuvre an inch. I was impressed. And a young black guy passed me on my way home from the bus stop, even pausing his phone call to smile and say "Goo'night, take care man". I got that nice warm feeling you get when human beings are kind to you without being asked and with nothing to gain from it. And I'm almost positive that wasn't just the Chablis.

Light Relief

I mentioned before that travelling around on wheels at night (or even in the daylight, which we're getting to be a bit short of now, of course) can be a bit scary when you either have to take to the road or cross one.

Bloody boy racers.

And then, of course, there are the pedestrian lights, which also seem nearly always timed for boy racers. Or fit sprinters, anyway. It can be unnerving even if you're crossing slowly on crutches; some drivers seem to think they're F1 racers, and somehow, if they're not shooting forward the second the lights change they'll miss out on the fizzy stuff.

And I've discovered being in a wheelchair can be worse. I've become used to pedestrians not seeing me in a wheelchair. Especially all those busily chattering on their mobiles, focus fixed somewhere dead ahead at normal chin height. Which means they simply don't seem to be able to see someone sitting down,  even when they're right in front of them. I've become quite adept lately at making crash stops to avoid breaking their ankles with my footrests.

But any other kind of crash I've become nervous about. There's so much in the way of reconstructing pavements going on in London now you simply have to take to the road instead of the pavement often. And if you're invisible to half the pedestrian world when you're in a wheelchair, the same is even more true of motorists.

So, since I'm intending to be out and about at night—I don't see why I should be restricted to daylight just to make myself more visible—I've been adding lights to my wheelchair, so it now looks like a Christmas tree.

Red bicycle rear lights; bright LED bike front lights. The latter a new idea, since I'd become very twitchy about not being seen side-on crossing streets and I thought bicycle reflectors on the wheels might not really be bright enough. I found some that can be seen from the side, as well as the front. Cheap, too; a quid each from Poundland.

And a fancy touch, just for fun. Although I got them because I did want to be visible from the side when crossing roads. A thin red (I wanted orange, but they sent red) optical fibre tube that flashes and I've fixed under the armrests and around the side panels.

Overkill, maybe. A bit flashy even, you might say. But nobody will be able to say they didn't see me coming. Or going.

Next step, of course, should be sponsored neon advertising on the backpack fixed to the back of my seat. Any offers, Heineken?

Transports of Delight . . .Part III

That trip to the Barbican Centre . . .was a bit of a disaster. Again.

We abandoned the Tube after the last attempt, and went for the bus instead. The bus from Paddington towards the Barbican is run, it would appear, by Stagecoach. 'Nuff said. Well, no, I've quite a bit to say about them . . .

As comedy is all about timing, voyaging in a wheelchair is about planning. As comedians can never have enough jokes, if you're taking a trip on public transport, you can never have enough maps.

We thought we'd recognise the nearest stop . . .We didn't. Somehow, we ended up going round in circles. Literally. Around Finsbury Square. Twice. Passers-by were helpful . . .sort of. A young couple, though, suggested heading for Liverpool Street station. Been there, done that. Twice as far away from the Barbican as we thought we were. and no, you can't get a wheelchair on the Tube from Liverpool Street to Barbican Station as they suggested, though admittedly they couldn't really be expected to know that.

Another directed us to Moorgate station; which we found, eventually. But then, confused by roadworks and dug-up pavements, which of course, neither an A-Z nor Google Maps on a smartphone had any knowledge of, took a wrong turning and ended up at Finsbury Square. Again.

Still, we did make it eventually.

But the way back . . .I'm going to abandon the 205 route. The buses are old . . .obviously recycled from somewhere near a scrapheap. My spine felt every damn jolt. And we had to catch two buses; one abandoned its struggle for life somewhere around Baker Street. And the ramp had stopped functioning.

At least the driver was ready to help, and came round to lift the wheelchair off; he was actually ready to lift me off in it as well, but I can at least stand and walk a bit, so I managed to save him from the kind of spinal injury that put me in a wheelchair in the first place . . .

And the second's wheelchair space was obviously an afterthought. I've never seen a bus quite like it: the exit door and ramp were almost next to the front door, and the wheelchair space a metre away from it. Not an easy manoeuvre to get into.  Or out of. People had to get out of their seats and stand so I could get in.

Stagecoach, eh? Wild horses are not going to get me onto one of their damn buses again.

Perchance to Sleep

Ben Mattlin, in the New York Times, on an 'assisted suicide' proposal in Massachusetts:

"I learned how easy it is to be perceived as someone whose quality of life is untenable, even or perhaps especially by doctors. Indeed, I hear it from them all the time — “How have you survived so long? Wow, you must put up with a lot!” — even during routine office visits, when all I’ve asked for is an antibiotic for a sinus infection. Strangers don’t treat me this way, but doctors feel entitled to render judgments and voice their opinions. To them, I suppose, I must represent a failure of their profession, which is shortsighted. I am more than my diagnosis and my prognosis.

"This is but one of many invisible forces of coercion. Others include that certain look of exhaustion in a loved one’s eyes, or the way nurses and friends sigh in your presence while you’re zoned out in a hospital bed. All these can cast a dangerous cloud of depression upon even the most cheery of optimists, a situation clinicians might misread since, to them, it seems perfectly rational.

"And in a sense, it is rational, given the dearth of alternatives. If nobody wants you at the party, why should you stay? Advocates of Death With Dignity laws who say that patients themselves should decide whether to live or die are fantasizing. Who chooses suicide in a vacuum? We are inexorably affected by our immediate environment. The deck is stacked."

. . . .

"To be sure, there are noble intentions behind the “assisted death” proposals, but I can’t help wondering why we’re in such a hurry to ensure the right to die before we’ve done all we can to ensure that those of us with severe, untreatable, life-threatening conditions are given the same open-hearted welcome, the same open-minded respect and the same open-ended opportunities due everyone else."

I'm on record as being generally supportive of one's right to choose when to jump off this mortal coil. Not that I myself am yet in the sort of situation where I might want to take it. But Mattlin puts his finger directly on the reasons for the reservations I have about it too. I would want to choose for my own reasons.

Of course, that's selfish, in a way. But I do not want to find the society around me forcing me into that choice, as, in the UK, government policies increasingly may. To make your own choice as to whether or not you live or die should depend on the society around you—whether it's friends, relatives, or the broader society of local or national government—having done all it can for you.

So that your own decision is one that is in fact entirely your own.

But that is not the way I see things going. Mattlin is absolutely right in wondering why societies often seem to be keener on ridding themselves of 'useless mouths' in as brutal and coercive a fashion as the commanders of besieged towns in the 15th and 16th centuries did, instead of giving them the wherewithal to live.