Thursday, June 18, 2009

Not Hitting Your Head

I was going to write about something serious, but thought it would be funnier to write about accidents.

One story that always worried me was that brain cells don't grow back if they get damaged. I was running this past a scientist friend, worrying about the number of times I bang my head. It turns out the scientific lowdown is that I should stop falling down stairs. As if! Here's a day-in-the-life-of during one of my travels, based in the Sino-Western tourist village of Yangshuo on the superbly picturesque Li River:
Today I woke up, breakfasted, broke the restaurant's sign leaning on it going down a step, had a calligraphy lesson, fell down the stairs going out, got a discount on the lesson, walked away bruised and laughing, ate lunch without anything going wrong, had an exceedingly painful massage, ate dinner with taiwanese sisters. It's unclear where the evening will take me now. I think a second dinner might be on the cards
The wonderful thing about falling down these very uneven concrete stairs was that I landed first on my shoulder, only afterwards hitting the rest of me. Which means that there was no blood, and none of this going to the hospital to get stitches business - hence my nervous relief. My teacher, who hadn't accompanied other trips I've taken down stairs was really quite unsettled by the affair. From then on he was even more generous than he had been to start with.

A few months earlier - on a different set of travels - I'd just met some Spaniards, we'd had a drink, and decided to roll on to dinner. While sliding on to the fairly high seat of their 4x4, I slid straight off; landing on my back and head. A dismayed voice tells me that the latter is bleeding, and this writes off the rest of the evening. They're very kind, and I decline their offers to take me to a hospital, and we say our good-byes. In the bathroom of my hotel room, I try to rinse the blood off my coat: in the cold (no heating, or other warm clothes) I look at myself in the mirror above the sink and feel intensely lonely. Not unhappy, lonely, and not telling or wanting strangers to know or to notice what was going on.

There are many many more of these incidents - I'll trouble you with just another, more recent. About a month ago, a few of us had got back off the ferry from Niteroi after some beer to celebrate a fellow-anthropologist's birthday. I'm campaigning for the next party, but some go straight home by bus, a girl walks me to a taxi waiting in a side-street and then goes home herself. The taxi-driver doesn't like my ideas of a party either (Lapa is too close) and wants me to pay above the metre. I say no, ask the other taxi whether he's keen, and the pair of them play a little game to pretend they don't know where the place is (they do). Fine. What's the problem? I stride off to the main road to find someone less of a jackass.

And happily stride off I do. About half of the way, when on one of the uneven bits of the road my foot gives out. Well, shit. There's no one around - which I had been worrying about because I might get mugged, and now I'm worry about because I won't get helped. Perhaps it was imagined, but maybe I see one of the taxi drivers looking my way - but I'm certainly not crawling back to him. I'm not entirely sure what my plan was, or where my confidence came from. I do remember looking across the road - there are two steps as an entrance to a house. I decide not to go for them because I'm not sure if I'm able to use them, and don't want to crawl across a side-street. So I go for it, all a'crawling. I don't crawl on my hands, I crawl on my elbows (because my wrists aren't strong enough). Head down, off we go! Even (especially?) now lowered pavements are useful and I crawl from the road onto safer ground.

I take a pause to look up and work out where I've got to. A man is passing! I try the 'I'm disabled' line that I boasted so much about in a previous post. This was the line that always works - it doesn't this time. He wags a finger at me, and doesn't come even close. Sod all my clean clothes and presentably middle class aspect, crawling has ruled me out, and I'm not surprised. I call out after him that I really am disabled, and he sensibly ignores me. Fine. In what looks like the distance I can see a low wall that's the edge of something (steps?) and the main road. Head down, and it's that way we're going. My elbows are hurting, I can smell piss, carry on. Thank goodness the wall is sloped! It's not really a wall at all - I can sit on the lowest bit off it, bottom shuffle up to a higher bit, turn around and I'm standing up again!

I'm a bit dazed by the affair, and I walk gingerly towards the road. My jeans are very bloody at the knees, and so are my elbows: the first being due to falling and crawling, the latter just due to crawling. I don't wave for a cab because I don't have the confidence yet, but before I need to one has seen me and slowed down for me. It surprises me to realise that I'm a citizen again, and that someone might treat me as such. I complain to the driver about being refused a ride, and am soon in the centre of thriving night-life and have met my English friend who's having going-away drinks.

All of this is after my first two blog posts. In the first one I'd cranked out the phrase about 'private celebrations of athleticism and cunning' and by this stage of the evening I'm even more enthusiastic about this philosophy, describing briefly what's happened and rounding triumphantly off with 'I've won the olympics while you've just been drinking beer'. 'What do you mean, just?' Dan retorts, leaving it pretty unclear whether he accepts my disabled-champion thesis. He remains pretty skeptical, and starts getting pedantic with questions about how far I crawled - I gesture confidently at a distance, but really have no idea. I was too busy on elbows-and-knees to know, after all. Maybe 20 metres? Maybe not. The night carries on, we sit down and drink beer - I've refused to go into a show. (A story about a different night where I was dropped on my head by a friend and went on to the a nightclub regardless doesn't need to be told here.)

So what? The question that remains is what role these little accidents have in my life, apart from scaring my parents. As you can see, falling down the stairs or breaking things in restaurants in China was something that I could easily write home about. It's something that fitted into the scheme of my life as I perceive it, and if I tell it the right way, I might come out looking brave and adventurous. But the other two - apart from on the evening itself, after having arrived in Lapa, I don't think I've told anyone about before writing this. After the falling-out-of-car, I felt a lasting regret and incompetence; the day after all the crawling I felt hungover and pretty stupid. The people who'd gone home early asked me how the party had continued, and at no point did I tell them about this all-fours business. Neither of the incidents fit into my individual project: yes, I want to make new friends easily, yes, I like to stop people ripping me off. And here we are - 'Look what a keen negotiator I am: they can't overcharge me. Whoops, fell over afterwards, perhaps I should have just gone along with it'. I need a form of dignity that better accommodates physical fragilities, and I'm not sure if I have one.

Life goes on, eh? Especially for other people. These fluctuations and rude punctures of my reality don't make other people's realities any less strong. As Dan pointed out, what happens to me doesn't make other experiences weaker: there wasn't any 'just' about the amount of booze he'd been drinking. These little hiccups in my life where I am jarringly broken out of normality are followed by uneasily breaking myself back in: carrying on with the rest of the day or the evening, probably feeling weaker, often with bloody knees, perhaps resting the next few days. It's no coincidence that I've not told you about things that ended in hospital (as I say, there are more stories). Medical discourse, while bringing different complications, imposes a formal structure of Visits, Treatments, etc. If I had let the Spaniards take me to a doctor, then I wouldn't have been alone - I would have been transformed into a medical object to be treated or not according to the competences of the local system. Which would have then been very easy to verbalize.

I don't know if there are any snarkers in the audience being puritanical about alcohol: if there are, I'm going to tell them the same excuses I tell myself (and for this discussion we are not including anything that happened during the first year at university). I felt pretty/relatively sober in both of the incidents that involved drink before; certainly merry coming from Niteroi, but no more. I've drunk a lot more without incident, and soberly hurt myself a lot more. And it's certainly not just alcohol that makes my knees a bit weaker: so does carrying a heavy bag, or being tired. Fortunately, most of the time I know to be a lot more careful on, say, stairs if I'm tired or excessively 'cheerful'. But certainly worrying about this responsibility is something else that made the incidents harder to talk about.

An argument along the puritanical lines, or one that says that if I didn't travel in the developing world then there wouldn't be so many dodgy staircases to fall down are both saying that the way these accidents should relate to the rest of my life is as a guide for what not to do - that I should embark on a full-time restraining of my behaviour as a prevention. I feel very fortunate that I have had the chance and independence to make these mistakes (have these mistakes happen to me?). It is a liberty that someone trying to be too nice to me might want to take away.

Sunday, June 7, 2009

Bad for You

While I am innocently loitering outside the library, I start talking to a teacher.

She says to me, "These steps are bad for you."

"Just fine for me, actually. Impossible for me to actually go up or down of course - but as you can see, hanging around out here isn't so tough. I open the door, catch the attention of one of the cute librarians and get them to fetch me my learnings. Which is wonderful, because if you actually let me into a library then we'd all (limpingly) find out first that I don't understand the numbering system for the books, and then second that if they were too high or too low I'd come back crying for help anyway. For me on the outside, things are just dandy."

And that's just the first half: "But what about these steps for you, professor? Isn't it bad for you that one of your students can't use the library? Does that bother you? How come all this accessibility is only my problem? I carry on with my life and if I can't get somewhere then I can't - maybe I ask for help or maybe I just don't try. Surely the people for whom it's bad are the people that know me and who carry on prancing up and down steps all over the place. They are the ones that should be thinking, hang on, I know someone who can't do this. And that should be something bad for them - at least every now and again. If I let all the steps in the world be bad for me, there wouldn't be time left for any good, so I don't."

Obviously I didn't say any of that. I bought into the whole thing, very appreciative she was asking - and I cheekily asked whether the library would be accessible when the renovations are finished. Look how easily I was divided and conquered! The problem is made about one person: who is this 'you' for whom the steps are bad? What about everyone else in the world for whom they're a problem, and for those for whom they will be a problem later in life? Singling me out is a euphemism for what in this case is systematic inaccessibility.

But a problem with being divided and conquered by a tyrannical system is that the system sends nice people to do it. Everything I know about this teacher suggests she's beloved by students and staff alike, and that she was asking me out of a genuine concern. And even if I didn't want her to like me too, I still think the above would be an over-reaction to say to anyone - politics and everyday conversation don't really go well together. If I were to say these things, I'd hope to say them in the way she might help me if I said something dumb about anthropology - sweetly and gently. Sweetly and gently making something a little less my problem and a little bit more our problem.

[In part this is a response to incurable hippie's post on inaccessibility, who as she mentions is in a 'beyond diplomatic' stage that I'm not yet brave enough to adopt.]

Sunday, May 10, 2009

Asking For Help

I've started writing online, mainly to talk about disability. It's a bit of a minority interest for my real-life conversations, and quite hard to express, so the plan is to enter into dialogue with the other disability blogs out there. I'm also posting to Facebook.

The starting point for this post came from reading two opposite statements. One was offended that people do not offer help in public when it is obviously needed; and then the second was a rule that 'don't help me unless I ask for it'. These are two different perspectives from people in very different situations, and it seems that both are right. The world of disability is a contradictory place - one rule is unlikely to fit all of it, and so much depends on personal biography.

Let me illustrate with a situation fundamental to my own life. I walk limpingly - and everything is fine and dandy provided there aren't any steps. But in lapses of concentration, in being bumped into, in irregularities of pavements, or - as some friends like to suggest - lapses of sobriety, I fall over. On average, this happens a few times a month. And when I'm down, I'm down. It's quite a production for me to get up unassisted, and something I normally only do if I've fallen over at home (steps or beds or sofas are excellent things for me to gain a sufficient height to stand up). My strategy after falling outside of the home is to stay on my knees as I landed and look around for a man - if I can't see one, I wait. Then I look directly at him and say something like 'excuse me, I'm disabled, can you help me?'. Sometimes I choose the euphemistic 'can you give me a hand?' but I feel guilty about how much this understates the case. If they then offer 'a hand' I have to explain they have to use both, grab my armpits and lift me bodily upright.

My strategy has, so far, been a Winner. And globally so - I've tried this on wide-ranging travels, with greatly differing levels of linguistic competence and on the whole it's worked. There have been rejections - the first hurt terribly - and, in foreign parts, confusions about what I needed, but nothing beyond typical linguistic and social misunderstanding between a tourist and locals.

But, as I've said, one needs to get into the details of personal biography to understand these things. When I am on the floor, who am I? Still me, obviously, but people who don't know me can't know what that is. Over recent days I've been thinking about who else is on the pavements of Rio de Janeiro, and how many people I (and many others with me) have refused to help in one way or another. There are people asking for money, or for food, there are people trying to sell things, and there are people not asking anything at all but to whom one might still give something. I'm reluctant to use the word 'beggar' because it seems to make the assumption that the person is doing it full time, and you don't know this from only seeing them once. In the ratio of helpers to non-helpers, these are plenty of people getting a much higher percentage of non-helpers than I do.

It is especially easy for me to get help if someone has seen me fall over, knowing I at least used to be part of the good, upright, people. Even if they haven't I am usually not identified as a beggar or a low-life to be ignored. I am male, white, short, young and (usually) have presentable dress and good hygiene. I ask for help directly and apart from slight panic in my voice, assertively. While in the UK my accent will mark me as quite-educated; outside the UK I'm often in developing countries and will perhaps be given a high status as rich foreigner/gringo. In short, I appear quite a safe choice for someone to do their good deed for the day. It seems to me in appearing temporarily in need of assistance one does a lot better than the people who give the impression of being more permanently in need - another thing that helps me here is my position on the pavement; in the middle rather than on the side with my back against a wall. I do not know what would happen if any of my characteristics were different and how much changes would affect the ratio of helpers to non-helpers.

And notice how sneaky I am! I identify myself as disabled before asking for help, and it's wonderful what this category can do. The examples I have recently are from India and Brazil. In India there is a great deal of pushing and shoving in situations where Englishmen would form a disgruntled queue. On two occasions people were pushing in front of me, in what seemed from the murky depths of my English education, to be obnoxious and self-centred. I fixed them with my eye, and said in my best Bengali 'I'm disabled', and open sesame! they seemed to positively enjoy utterly changing their behaviour and giving me priority. Brazilians require foreigners not on a tourist visa to register themselves in the great mess of brazilian bureaucracy. I turned up mid-afternoon to their federal police, and a petty official was saying - not without a certain pleasure - how I needed to print something out from the internet, go to a bank, and then come back at 7am to get a number for the queue. After he finished I said hopefully 'I'm disabled... is there any other way?' He asked, 'what type of disability?' to which I promptly did my lopsided waddle and lo and behold! our official became a paragon of helpfulness. Of course we could do it that day, he would print things off for me, there were banks very close... and what takes most gringos many hours of their life, and perhaps more than one visit, was done by disabled me in one go and less than two hours. Which brings us to another facilitator: my disability is easily understandable as a mechanical difficulty of weakness/slowness. People with invisible disabilities report other reactions to requests and they meet little despots with little theories about how 'it's all in the mind'...

And what a slippery category disability is! Each person with a disability is affected in different ways, and more of it might be around the next corner for any of us, whatever our current disabilities/non-disabilities. It is a very broad church that I claim a part of. In Banco do Brasil, which many people living in this wonderful tropical country are forced to visit, there is a special queue for disableds, ageds, pregnants, and who knows what else. Yet there are too many people using it (personally, I have nasty suspicions that some of these ageds aren't as aged as all that, and should suffer with the young uns). Which means the queue is not very special any more, and almost as interminable as the one for the non-aged, non-disabled, non-pregnant majority. I just hope that no one goes there who actually does have a problem! They'll have to make a third line for the extremely aged, extremely disabled and extremely pregnant. It all seems a little silly in a country where a nice smile and a request can get you so far... Although, to be fair, Brazilians inside the Banco do Brasil are on average a good deal less friendly and laid back about life's journey than Brazilians outside the bank. And, more importantly, not everyone who needs help has a nice smile or the energy. They might be 'already running on empty from dealing with life'.

In the bank, the institution has made a category of people who should get special treatment. In the world outside of institutions things are not so clearly marked, and crying 'disabled' is not the only way to get help: in Morocco I remember preemptively learning the arabic word for 'problem' and soon after deploying it while pointing vigorously at my leg - someone very cheefully helped me up the steps in question. I shall never know what categories of dependence he put me into that made him so willing. But it is these categories of goodness (and charity? pity?) that I am trying, and am largely successful in, accessing. Not only have I defined myself, but I am trying to bring out a good side in my interlocutors. They can't all be good people: I am sure there is many a man that will be kind to a stranger even though at home he beats his wife.

This is one of the features of dependence: one is dependent on such a wide range of people. Not only those close to you, but also chance acquaintances, officals, strangers, neighbours. Once, in an Hour Of Great Need, someone whom I knew but wasn't the biggest fan of, immediately and unquestioningly gave me a Great Assistance. This was, and remains, a humbling episode. It makes me wary of being on bad terms with anyone: if I do not know when I will need help I do not know from whom I will need it.

Disability becomes one of one's great modes of interaction with the rest of the world, see. It no longer embarrasses me (so much) to need physical help in public, getting up from the floor, or whatever else. Crowds watching hardly bother me. A friend helped me up from some cobbles and said 'don't worry, I don't think anyone saw' - my reaction was to think how far I was from giving a damn. (Although I'm by no means always so steely-hearted; I perhaps feel most acutely when I need help in front of people I've just met, especially of the pretty female kind.)

It's easy when I'm on the floor to say I need help and ask for it, but the rest of one's life poses much greater difficulties. What does one and what does one not attempt in the first place? The uniqueness of one's situation means it's very hard to compare oneself to others as a measure of what is and what is not possible or achievable: there is no class of disableds to come top of. Those close to you are going to have their own ideas about what you can and can't do, and these ideas may be right. But no matter how much one loves you, no one is perfect: their ideas might be very wrong. I've got nothing against pity, and seeing some of my disabled friends' problems breaks my heart. But I'll be damned if I let them know that, because I think it would be an unhelpful attitude for them to have about themselves. Accepting as one's own the expectations others have of you can be imprisoning.

One way of being disabled is a fierce individualism. This is certainly not available (accessible?) to all, and nobody can keep it up permanently or without help. The individualism of disability means creating and choosing for yourself your own definition, the things you will and will not attempt to do or to be, establishing your own possibilities. Demanding to confront the world on your own terms: not to care about the staring crowd, and to be able to have a perception of yourself different from those that other people have of you. It also means making oneself and one's problems a priority - a priority either to the people close to you, the people who pass accidentally through your life, or institutions you deal with. When the other arguments fail, it comes down to yes, I ask because I need it: 'We are talking about me'.

As well as being a response to many other articles I read from BADD - some of which I've sadly been unable to find again and link to - this is also a response to something I wrote as a teenager, optimistically entitled Being Disabled.

Saturday, May 2, 2009

My Gorilla is Quite Tame

I've been browsing the posts of the Blogging Against Disablism Day 2009, and one of the most interesting things I came across was a link from the 2008 day, The Gorilla in Your House, which was an extended comparison between living with a disability and living with a 200kg primate.

A gorilla-housemate is a nice analogy for the way I've been trying to think about disability and its expression as unpredictability. How the normal course of affairs can be suddenly derailed - how a car or a person or a crack in the pavement in the wrong place might throw everything off balance. Sharing one's life with a gorilla means taking a rather short term view of the world, a view in which one does not know what is around the next corner and whether it will be surmountable. If you have a body that has a fragile relationship with the world and itself then there are a large number of things that one cannot take for granted, and that one cannot predict.

Everything has an upside, of course. There are many trivial challenges - trivial in the sense of a small step, but a small step can be a big problem - trivial challenges of, say, a toilet I don't know whether I'll be able to stand up from. But facing down these challenges can, on a good day, make one feel like an absolute champion. 'Disability is an art. It is an ingenious way to live' [via] and it comes with its own private celebrations of athleticism and cunning.

Also, it's not surprising that gorillas make for good rock music: Spasticus Autisticus from Ian Dury; 'as I walk past your window give me lucky looks'. [via Floating In space]