I whish to clarify something which may have been ambiguous in yesterday’s entry. I did not mean to imply disabledism doesn’t exist, but that it is fundamentally different to other ‘-isms’. Whereas racism and sexism are both born of blind hatred, what can be called disabledism is born of such things as concern, care, and laced with a dose of fear. They don’t plonk us in special schools because they hate us, they plonk us there for such condescending reasons as ”my son couldn’t cope in mainstream”. Further, disabledism is caused by factors in our environment: the lack of ramps, hearing loops, large-print signs. And while we’re at it would it hurt libraries and internet cafes to have key guard or two lying about?

I guess I was indulging in a little academic pedantry yesterday. Of course disabledism exists but only as a shorthand. For example, I was patted again yesterday, in the canteen on the shoulder: you might term this condescending act disabledism as it is born of prejudice; but you could also call it a misplaced display of friendship and care. My concern with labelling it disabledism is that implies hatred, loathing, something which it manifestly isn’t. I feel the term as a whole carries with it overtones of manifest repression: disabled people are not hated, as black or Jewish people sometimes are. People care for us and worry about us too much; they do not hate us. This is what I meant yesterday when I wrote that disabledism exists only as a shorthand for a set of other factors: its far more complex than simple hatred, and to see it as such is as unhelpful as it is paranoid.

The good news is that this would suggest that disabledism can be overcome. Hatred is blind, but people can learn what sort of behaviours are bad and patronising, and will, in my experience, happily avoid them in the future. The environment can change, and is changing to accommodate us cripples. Architecs do not put stairs and steps in buildings just to repress us – some people seem to think our environment is deliberately repressive, which I find absurd. Things,, I feel, are getting better as people become more aware. I guess in a way disabledism can be seen as a lack of awareness: if so, as I said yesterday, we simply have to teach people.

I know I missed blogging about disabledism day, as set up by the goldfish. I blame my memory. Mind you, I’m unsure disabledism exists as an entity in itself. While disabled people do indeed face certain factors which hold them back compared with others, these are environmental issues which can and will be overcome. More and more these days we see ramps and lifts being put into place; people are becoming more aware of disabled people, our needs, our differences.

Thus disabledism is, at best, a shorthand for a set of other issues. It is not, I’d maintain, of the order of sexism and racism: surely no one thinks they are superior to disabled people, as white people once thought they were innately superior to black people. even if some do, by and large this stops as soon as people get to know folk like me.

There is no denying there’s much work to do. Education is the way forward – we must help people learn to accept us for who we are, and the only way we can do this is, as my grandma would say, to ‘mix’. We must fight segregation in all it’s forms, encourage people to accept us for who we are, and help change the world around us to accommodate us all equally.

Ah I remember now

I was thinking last night about this culture problem. The notion of disability-as-identity still troubles me. I was speaking to a guy recently who seemed to suggest that his cerebral palsy went to the core of his being; that is, he had positioned himself as ‘other’. He spoke of ‘inner self’ etc. I would hope that those of you who have read my recent witterings know how problematic a notion this is to me: I know enough about Abnormal Psychology to realise that ‘normal’ is subjective’. I mean, how do you define normal? Even when we reduce the subject to mathematical averages, any cut off point between normal and abnormal is arbitrary. It follows, then, that everyone is normal.

This has implications for inclusion. If everyone is normal, then we all have an equal right to go to the same schools. By widening the definition of normal, we must also expand the ability of schools to accommodate normal kids.

As I keep saying, segregated education fosters difference. Yet we can also reverse that: you foster difference by segregation. The notion that disabled people should render themselves as ‘other’ in order to ‘develop their culture’ or whatever, should, by rights, logically lead to a pro-segregation stance. It is as if we say ‘we are different, therefore we should be treated differently’. The notion that we are different gives rise to the notion that we should be treated differently. This is exactly what happens in the case of religious schools: they foster culture but also difference, and needless to say I am against those too. Thus I find this disability-as-identity bollox ultimately uninclusive. Hell, look at Palestine, look at northern Ireland.

That’s why I define myself as normal. Okay, I use a lightwriter and wheelchair, but they are just tools, and after all tool use is part of what defines us all as human. The fact that I have cp is no more a part off my identity than the fact that I have brown hair.

I went to a beach volleyball slash barbeque today. Basically uni dumped a shitload of sand on the field and set up a net. It was good fun, and I decided to contribute a cat empire cd for the stereo, as it seemed appropriate. Well, its better than the gangster rap or chart shit they had playing.

It was pretty informal; just some hijinks in the middle of exam season. Interestingly, however, one team – the special Olympics – had a guy in a wheelchair. He’s a sports student, in a manual chair: one of those new lightweight things with thin wheels. This rendered him totally immobile on sand, however. They had to carry him, chair and all, on to and off of the sand pit, and during matches he just stayed still, looking like a lemon.

I really do whish people would think things through sometimes. A nice idea, but fundamentally uninclusive.

this video appalls me. you can call me callous for taking that stance, but as a person who saw 13 years at a special school, who can see in this video the almost subhuman way they treat the pupils and the dogmatism of the parens, I find this video pretty revolting.

I think my recent blogs have done me good. In forcing me to question the precise nature of disability and the paradoxes inherent to it, I’m thinking more critically towards film, and have been producing some good stuff. Mind you, Alan hasn’t passed comment on my most recent submission, so, like my blog, I could just be going round in circles. Oh well, articulation is articulation. How Lacanian.

I was down in London this weekend, doing a lot of thinking. I’m not satisfied, fully, with my theories of disability. Everyone is equally different, and therefore everyone has equal claim tot be termed normal, yes, but this has ramifications for multiculturalism. Sometimes, we need ‘difference’. Its cool – yesterday in the park people with families from all over the world were walking; I love the mix of cultures, but this could be seen to contradict some of my attitudes to disability. Should I ask everyone to assimilate; do my fears concerning the disability sphere ghettoising it’s us and them mentality and therefore ghettoising themselves not also apply to any other subculture? If so, should I not attack multiculturalism rather than praising it?

Of course not. Let me put it this way: I love mixture. I love the mix of cultures we have in Britain. I love having Greek Turkish or Indian shops around the corner. To me, the danger lies in a failure to mix. If we look inwardly too much, fettishiising our disability, focussing only on disability politics and how ‘we are hated’ that the danger lies. If members of any other subculture – say, the Greeks – chose only to interact with their selves, rarely spoke to non-Greeks and found it vitally important to ram the fact that they were Greek down everyone’s throat, then they would effectively ghettoise themselves. By no means should he stop worshipping in Greek churches or drinking ouzo, just as we need to continue to use the gadgets of disability. On the other hand, a lightwriter is a communication aid, not a mark of culture; it is my voice, and I cannot leave it behind. If I, say, went from England to US, I’d theoretically swap cricket for baseball, as culture is somewhat fluid; disability is more fixed. The alllusion to culture onlyy holds so far, but it nevertheless holds. I guess a balance needs too be struck. It is only when it goes too far, and you refuse to change or mix that it becomes dangerous. Until then, vive l’difference.

Lee dropped by today. Like my father he has a habit of appearing, without warning, at my window; yet , like my father, its always good to see him. We went out to the cinema – I was very eager to do so, as I wanted to test a few theories I have, and its always good to get off campus. So down to festival park we drove, in lee’s nice new fiat. The film we chose was ‘The Spiderwick Chronicles’.

Interestingly, I doubt we could have chosen a better example of how memetics can be applied to film. It is as if the producers took 5 or 6 other scripts, cut them into chunks and mixed them together, and then piled a shitload of christen imagery on. It is about a book, which describes these magical creatures in our world. Some are good, some are evil. The evil ones need this book because it would allow them to rule (can we say ‘ring’). To win the day, these three kids must get the author of this book to return from this magical glade where he was prisoner. There was a griffin stolen directly from both potter and narnia. Almost every shot was borrowed from somewhere else. Even the name of the central baddie, Mulgarath, is strikingly similar to morgoth. So only by protecting the book can the kids defend themselves in an obvious reference to the bible. When he returns from the glade, spiderwick hasn’t aged, saves the day and is last seen ascending to the sky. I mean, this is a blatant piece of Christian imagery: comes again as if from the death, uses his all-powerful book to defeat the baddie, and then goes up to the sky. It would be fascinating to deconstruct if it wasn’t so awful.

I was thinking today about why I call myself a cripple while maintaining that I am just as normal as anyone, and came up with a theory which might resolve the contradiction. Historically, cripple was both a medical term and term of abuse. It denoted other-ness. But in using such words o refer to their selves, the connotations of otherness are removed from the word. It becomes just a word by which I describe myself, like ale-drinker, transvestite or trekkie. This makes being ‘a cripple’ as normal as being an ale-drinker – cp is just an attribute of myself, like brown hair. Inasmuch as if I have the correct equipment I can do anything I want, I am just the same as anyone. This is why I object so strongly to people calling non-disabled people ‘normals’; its as silly as people with red hair calling brown-haired people ‘normals’. Yes, we cripples sometimes have to club together to get stuff done, but I refuse to see myself as different to the rest of society. I am normal – ale-drinker, transvestite, cripple, and the rest.

Nothing much is happening this end. Something mind-numbingly stupid is happening online, but I better not talk about that, even though I’m very angry about it. I was over at my supervisor’s apartment in Crewe yesterday; Alan’s place is so cool, chock full of books, decorated in strong, vibrant, north African colours. He had invited me over after our weekly meeting, and we were talking films and sipping espresso. Alan says my thesis is going well, but I just need to be more academic and back up my ideas. He seems excited, as I am.

He told me a story I think is worthy of recording. Some years ago, Alan was burgled, and books were taken while he was living in Birmingham. Many years later 30, I think he said – Alan was in a book store on the walls in Chester. He found a copy of one of his stolen books, and looking inside found his name. what are the chances?

This subject really has got to me, and I’m furious. Some of my disabled colleagues have misread what I wrote on Saturday, and taken it wholly out of context: I want 1voice to stay true to it’s original intention, but they do not. There is nothing in it’s manifesto concerning campaigning outside of fund raising etc, or indoctrination, just empowerment. It’s about showing kids what they can achieve, that they can hold their heads up, and be proud – nothing more. For thee record, I do not hate my fellow role models. My words have, I fear, been misunderstood, deliberately taken out of the context in which they were intended, and now because of the blatant stupidity of certain people (who have little to do with Onevoice anyway*) something I care deeply for is being taken away from me.

I’m pissed off.

*not a fellow rolemodel

The more astute of you have probably spotted a small hypocrisy on my part. While I have attacked what I see as the increasingly insular behaviour of the disabled community on account that it might be shooting itself in the foot, I still partake in my own freakism by referring myself as a cripple. By using this word, I automatically allude to an idea of normal which I exist outside of. Yet in recent blogs I have shown how I believe that there is no ‘normal’, and therefore I am ‘normal’. Why, then, do I still to myself as a cripple? This occurred to me as I signed myself ‘the cripple’ in a message to a friend last night.

I like doing so. I guess I like the feeling that I am slightly different to the rest of society – a freak, as it were. I want to celebrate the power of using a word reclaimed from a term of abuse. Yet society has no normal, thus I am not a freak. How do I square the two. It goes back to what I wrote here: ” I am supposed to expect people to accept my needs and differences, but shouldn’t have to explain what those differences are to people; I shouldn’t be expected to have to conform to an essentially arbitrary status quo, yet I hate people staring at me for being ‘different’. Nor should I have to explain my views on the politics of the status quo to people. I belong to a community, a subculture, yet I am no different than anyone else.” I am simultaneously a freak and normal, and I like being both equally. Inasmuch as I am as free as anyone else, liberated under the social model, I am ‘not disabled’, yet without cerebral palsy I would not be me. The truth is, I cant get my head round it.

I have just been thinking. There is a difference between politicisation and empowerment. I am against the former, but for the latter. The disabled community has become too politicised, I think; that is to say that it has become too dogmatic – increasingly we are adopting a politics of ‘us and them’ and talking about the need to fight. There are those who use the term ‘normals’ to refer to people who aren’t classed as having a disability. To me,, this is childish. For heaven’s sake, there’s no such thing as a standard human, so I have just as much right to call myself normal as anyone. This ‘radicalism’ which seems to have infested itself in certain people will do us no good in the long term. We need to include people, to show them how our bodies move, but other than that we are just as normal as they are. We need to celebrate our normality, not push people away by shouting political slogans. It’s a case of tortoise and the hare.

Of course, we must first be able to compete. Disabled kids should not be told how different they are by being pushed into special schools. They need to feel just as able as anyone else. That’s what Onevoice does; it enables kids to become empowered by interacting with adults with the same disability, thereby showing that they too are ‘normal’. I fear that some people in the disabled ‘sphere’ would have Onevoice act as an overt tool for the politicisation of the young people involved; it isn’t.

those young people don’t need telling what to think, that they are hated by certain members of society; or that they need to fight. I doubt that this was Tamsin or Katie’s intention. They need to be inspired and empowered, not politicised. I would strongly oppose anyone who tried to turn Onevoice into such an organ.

Doubtless disabled people face certain challenges. To overcome them, we need to hold our heads up high, be proud of ourselves, sure of our abilities. We do not need to ostracise people with combative politics which underlines our differences, not our similarities.

The quickie groove I was test driving went back today. It was ok, I suppose. Apparently, the battery problem was just that particular model, but that didn’t solve the problem of the charging port being hard to get at. I need a think. On the other hand, I might just make myself one of these.

I now see why those lads drove F55s. for the last 29 hours or so, I’ve been driving about in a quickie groove, a possible replacement for defiant if and when she finally says ‘oh fuck it’. Very kindly, the guys in the shop brought it over for me to test drive. Thing is, I’m not sure I like it.

It looks good, yes, and it has a seat raising system, and it must be said it is more manoeuvrable than the f55 as its driven by the central rather than the back wheels, but it’s range is much smaller. I had barely driven it today, and was making my way towards the Plough after dinner this afternoon when the power-meter struck red! I mean, that’s rather pitiful. I had to turn back and swap chairs. Mind you, it’s also harder to tell whether you’ve plugged it in to charge properly, which could be the problem. On top of this, it feels slower, although I might test this tomorrow with a drag race. In short, I’m not sure I like it.

I could just be used to defiant. It’s heavier, feels more stable, and although I can’t raise the seat, feels more adult. I guess the biggest drawback to the groove is the range, I could live with the slower pace, but I relish my jaunts off campus and the freedom the range of the f55 gives me. Problem is, apparently they no longer make F55s.

This year my neighbour is a mature student, called Robert. I’m not sure how old he is – about sixty, I guess, but the thing is, he loves to party. He says he loves university, which has probably invigorated him as much at it has me. We have become firm friends, and last night, for the first time, he took me out.

We went into Manchester. Its ironic that after four years of being a Manchester student, I’d never been out in Manchester. We went to a karaoke night in a student bar: rob seems to love singing and describes the buzz he gets from it with great passion. Rob drove us up, and we sat near the stage, watching the acts. I had watched rob sing a couple of times when I decided, for better or worse, that I wanted a go. I asked Robert to put me down to sing Greenday’s basket case.

While I had to wait a while to sing, and at one stage I thought I’d missed my turn while in the loo, I did it. Rob was right; you do get a buzz. How much the audience understood I don’t know, but I found the whole thing highly amusing. Rob was there, behind me, singing along even though he didn’t know the song, and together we thrashed out one off my all time favourites. To a certain extent I was playing to the audience – everyone knows basket case, so the fact that I couldn’t sing didn’t matter. The audience enjoyed it, I think, for what it was: a celebration of diversity, freedom, and punk rock.

Rob rules. I’m going to buy him dookie.

I was in the wes this morning watching the news over breakfast. You know, I have relied on that TV for my daily dose of info for four years – I’ll miss it. It’s a small TV, mounted high in the corner with my neater eater in front of it. This morning, on the local news section, there was a report on this kid with m.d. in his twenties; final phase. You can always tell. He was campaigning for a particular type of therapy to be allowed. Not for him, but for others. And I thought ‘shit’.

Its not fair.

I was recently looking back over previous entries, and I realised that I’ve only missed posting on three or four days since Christmas. While I’m proud of this, it also occurs to me that most of the time I blog for thee sake of blogging, without having anything truly interesting to say. I’m aiming for quantity rather than quantity. I think it’s time for a shift in focus: no more waffling for the sake of it. I’ll still post every two or three days, but I’ll try to say something relevant more. Do you guys concur?

Have you ever noticed that Americans can’t make electric wheelchairs? All the cool chairs are from the u.k or Europe. They can put a guy on the moon (or so they claim) but they cant make a stylish mobility aid. Mind you, I just came across this video for Hoveround electric wheelchairs, which may explain a lot – satanic cripples aren’t too worried about style.

I was discussing wheelchair design with my old friend lee Mayer today; we decided that they just aren’t rugged enough. The people who design electric wheelchairs don’t realise that we crips can be as reckless as any other person our age; according to Mayer, an f55 can carry 6 people, not that I’ve tested this. yet the question is, don’t we have a right to be foolish? If so, why don’t they make chairs stronger? Part of freedom must be the freedom to be a damned fool.

It would seem that I have something pertinent to blog about, at last. Mind you, I hope I get the details right – I have a nasty knack of misunderstanding things related to practical issues like Banks.

It started early on Sunday afternoon. My mother helps me deal with the administering of my accounts, and we suddenly couldn’t access my account because we hadn’t got a pin number to use with a new card reader security machine to use with online banking. I don’t have a PIN number because it would be a security issue for me. I use a chip and sign card, as there is no way in hell of me entering a number accurately into a card reader. We therefore couldn’t access my accounts to pay my PAs.

We rang the building society. It must be said that they have been very cooperative, within their own constraints. First we spoke to a dude who sounded like he was 16, then his line manager. She, however, needed to speak directly to me, but couldn’t understand me on the phone. Using Colin would have defeated the object; anyone can use a lightwriter. Therefore there was no way of verifying I was me. She suggested the organisation’s Disability Communications Manager, with whom I have been communicating frantically for the past three days.

There has been much confusion. It seems I should never have been sent a card reader in the first place; at one stage me and dad were going to have to go to town to talk directly to the bank; at one stage I was offered an accessible card reader. At one stage the idea of giving my parents power of attorney was broached: while I appreciate my mum helping me keep my accounts and making sure my staff are paid, I refuse to relinquish full power over my affairs. Frankly, I preferred the original set up – it was safe enough, with no need for fiddly little devices I had no chance of using,

I explained fully my situation, and, with dad’s help the situation appears to have been sorted. I’m being sent a new chip and signature card, and there’s no need for that trip into town. I just wish people would talk to one another; had one department of the bank spoken to the other, they would probably have realised that there was a reason I didn’t use pin numbers, or at least didn’t have one. This is the type of problem disability legislation should be sorting out.

You know, the person I feel sorry for the most is dad. He must have spent hours trying to sort this out – time he needed to spend elsewhere. Moreover, my PAs will now get paid late; to them I apologise. These people in banks should think more!

Thirty years ago today my parents got married. These days, that fact alone is something remarkable; but to me what they have achieved in those thirty years is even more impressive. All three of their sons have or are working towards advanced degrees; they are both in managerial positions; they have a large, homely house; the list goes on. But what makes them more remarkable is their kindness and patience. They gave me a very good start in life, pushing me when needed, fostering my abilities. I admit I haven’t always been very co-operative, but the fact is I wouldn’t have got to where I am today without them: without t and c in bed on a Saturday morning, without bedtime stories, without science experiments.

My parents are, and always will be, my heroes. Happy anniversary guys.

I’m back at university. If I had started this blog entry a couple of hours ago it would have been rather miserable. I’m not sure why, but I’ve been on something of a downer all day. I love my parents dearly, and we’ve been rowing; it always disturbs me. I hate it. Yet the sun is now shining, and I know that the only thing more constant than the earth’s rotation round it’s nearest star is my parents love for me. How else could they put up with all the crap I put them through. They worry – not without basis – about my future, and they are concerned that I am lazy. But they forget that us crips can be a stubborn lot, and I can be quite the ass when I want to. I will succeed, and I feel guilty about making them worry. As the sun lights my rooom, though, and as the evenings draw out, I think about all the other summer evenings that I’ve sat here, and the sucesses of those days, and I think to mbyself that everything is possible.

Looking back over it, yesterday’s entry was a bit harsh, but the lad irritated me and I’m a bit bored of writing soliloquies on the philosophy of disability as I see it. Even so, yesterday’s entry was lazy blogging. The fact is, not much is happening away from the computer these days. I’m just chilling at home, working on my thesis, becoming increasingly addicted to msn messager and facebook. Its rather dull, but at least I have the antics of heather mills to amuse me. Who does she think she is? I admit I know nothing about her or the case, save that she keeps saying inanities, like she’s responsible for rekindling Paul McCartney’s career. I don’t remember it dying down; the guys a god! she’s a blatant egomaniac who would annoy me if she wasn’t so good to point and laugh at.

Anyway, back to uni Monday, and I need to pack. [looks around room] umm…yes. Wonder if mum’s busy. If she doesn’t help, I’ll just claim I rekindled her career and make some stupid statements about her holding my career back. It worked for stumpy.

Some people just shouldn’t vlog. In blogging, people can read at their own pace, so assuming the contents interesting (and I hope my recent blogs have been of interest – please tell me if they haven’t) people won’t get bored. Hence everyone can blog. But some people just have voices that drone on and on without saying much, like this dude, for instance. It’s just so boring, and I don’t think he can blame his cp. Nor can he blame his c.p on not having a girlfriend – what gets on my nerves about this video most is the guy’s pessimism. Anyway, who placed him in charge of who us crips can date? Oh the whole things just annoying.

The realisation that life as a disabled man is founded essentially on a set of contradictions is very satisfactory indeed. To be sure, it was only in part a realisation; it was also, in part, an admission. I have always hated contradictions and paradoxes: they don’t sit easily in my head, seemingly defying the natural order of things. That is why I like the theory of evolution so much: if someone asks ‘which came first, the chicken or the egg?’ I can reply ‘an egg laid by a bird similar but not identical to a chicken’. Simple. Yet in the world of disability I must embrace the paradoxes and the contradictions.

For example, I am special and normal. To brand myself as either is harmful. If I try to be normal, I’d endeavour to walk straight and talk more clearly, forcing myself to conform to an arbitrary idea of normal. It would also mean severing myself from disability culture, which I’m proud to be a part of. On the other hand, if I’m special why do I fight to be part of mainstream society, or take offence when people stare? Should I not accept my status as a freak and stop complaining? I intend to do neither, but relish in the paradox.

Another example is that of the disabled community. Similarly it sets itself apart from others by manifesting itself as an ethereal ghetto, while at the same time we demand to be included within society. We need it for unity, but wouldn’t it also segregate ourselves. On Monday I tried to frame this subculture of ours as a belief, thereby satisfying both needs. I still think the disabled community has what boils down to a belief system at its basis. In part this belief is, for want of a better word, a sense of pride in who we are and what ‘we’ achieved’; yet it is also a sense of common injustice and grievance. It is this that I have a problem with: there is no denying that the history of disability is a catalogue of atrocities, yet I had a happy upbringing in northern England, for the most part. I have all I need in order to live a happy, full life. I don’t believe I should feel the sense of injustice that is partly the basis of the disabled community.

Okay, that’s not exactly true. There is Hebden. Some would say I should forgive and forget; that I should let it pass, now I’m at university etc. but no, I cannot. I cannot forget those boys. It is only at special school that the things I saw went on. Segregation must stop – it can be stopped. ”That inscrutable thing is chiefly what I hate; and be the white whale agent, or be the white whale principal, I will wreak that hate upon him.”

We thus have yet another contradiction: part of me says I ought to forgive, and in so doing sever myself. Yet none of us in the disabled community can forgive or forget, lest the atrocities of the past happen again. Whether it is founded on hope or hate, the disabled community exists and should continue to do so, for only together can we change things for future generations. At it’s centre are contradictions, but I no longer see that as a problem, they are simply unavoidable.

You know, it all boils down to a set of contradictions: as a disabled man, I am expected to value my difference to ‘the norm’ but also reject the very idea of normal; I am supposed to expect people to accept my needs and differences, but shouldn’t have to explain what those differences are to people; I shouldn’t be expected to have to conform to an essentially arbitrary status quo, yet I hate people staring at me for being ‘different’. Nor should I have to explain my views on the politics of the status quo to people. I belong to a community, a subculture, yet I am no different than anyone else. To a certain extent that community is there and not there, its existence as I’ve written before is academically problematic. if it exists does it, if effect, ostracise others with a politics of us and them? we need it for the purposes of solidarity, but in a way do we not segregate ourselves further? wwe work towards inclusion, yet from certain vantagge points it is necessary to ghettoise ourselves.

I hope you all have realised what I’ve been trying to articulate these last few days. To me, these contradictions go to the heart of being a disabled man at the dawn of the twenty-first century. As all positions are equally valid – I am different, yet normal, and value my status as both – I see no way of resolving these paradox.

The whole thing is giving me a head ache.

The more I consider my entry yesterday, the more I like the conclusion I came to. Many of my readers will know how critical I have been in the past of religion, and I still find it illogical. In the past I’ve considered it dangerous – one of the factors which divides humanity. Yet it also has the power to bring people together, to give them hope and strength. This is why I am more comfortable in framing the disabled community with belief rather than politics. Politics can be and usually is founded on antagonism – if you are a conservative you are not a liberal, etc. in framing the disabled community in politics, we make it innately confrontational. Moreover, this cannot account for the social aspects of the disabled community. Belief can. It is belief which unites us: belief in ourselves, and each other. From this we can derive strength to fight the battles which need to be fought, not necessarily through confrontation but explanation. Moreover, this bypasses my reservations over ostracisation; while I still see dan as going to the extreme, I see no problem in wanting to show who you are. As long as we don’t ram disability rights down peoples throats like the proverbial Jehovah witness, our unity will help set us free.

To my mind, this goes some way to resolving my reservations over a cultural model of disability. It is not pride that unites us, but belief in our capabilities and in comradeship. It was not enough for us to, in a way, set ourselves apart from the rest of humanity without an underlying cause. Pride has negative connotations, seemed to divisive and did not stand up to analysis. Everyone is proud of who they are. On the other hand I find the concept of belief very satisfactory: one can believe in yourself and the strength of your community without placing yourself outside of or opposing any other community. It allows one to retain that slight feeling of difference from which everyone in the disabled community draws strength, without implying fundamental opposition or antagonism.

For a while now I’ve been trying to define what ‘we’ are. What is the disabled community? On the face of it, we are nothing but a random set of individuals with some odd physical quirks. Often we have nothing in common at all. By all rights, therefore, there should be no ‘us’ at all, and yet there is – emphatically there is. There needs to be in order for us to survive, to achieve equality. We have a thriving community, a strong social network, a profound sense of kindred. Last week I thought this might be politically dangerous in terms of ostracising our selves, but I just realised that it is something deeper than politics.

Perhaps it is belief. Not in any theological sense. It is a belief in ourselves and each other; a belief that, united, we can solve our problems; a belief that, no matter what our differences may be, we are just as good as ANYONE, and that we should have the same rights as anyone It is also a desire to display that belief, and be proud of who you are, and not to have to hide it away. Some people wear crucifixes, for they are not afraid, nor should they be. It just adds to the diversity of the world. People of different faiths live side by side in harmony more often than not; they seldom ostracise each other, or shouldn’t do And, as with any other religion, I feel some people go to greater extremes than others. Should we ban Islam for the actions of al qa’ida? Of course not. Religion can be a force for good or evil; illogical though it may be, it brings out the best in people. the cistine chapel is testimony not to the glory of god, but the glory of man. You may not be able to see what we believe in, or define it, but it is there. It is a belief in ourselves and the community. It gives us hope, courage,, and strength. And I am a convert.

I resent strongly the insinuation I have been recently getting from some quarters that I am politically nave when it comes to disability. I don’t think I am; I simply reject certain dogmas in the disabled community. Dogmas like the position that the disability rights movement is simply akin to the gay or black rights movement. It isn’t. disabled people are not hated in the way that black people once were, and gay people sometimes still are. By and large, once people get to know ‘us’, all prejudice goes – that is to say, it isn’t innate but stems from a lack of knowledge. This is why I reject this talk of ‘fighting’ and ‘counter attacks’. We simply need to open peoples eyes – to show them, in the end, that we are just the same as they are, with similar hopes dreams and aspirations as everyone else. With the right adaptations, we are just as capable as anyone else. It is my experience that people are more than willing to listen, and thereafter to adapt,, once we explain our views and needs. I’d argue that it wasn’t the hotheads in Dan that won us our freedoms, as much a growing general consensus that we have just as much of a fight to ride busses than anyone else. We need to explain, not argue or fight, for the latter will only ostracise us further.

The fact remains, despite all my witterings this week, that some people want disability represented in second life. While I reserve the right to criticise that attitude, and perhaps point out certain criticisms I have vis–vis pride and the way some of ‘us’ seem to shove their disabilities down peoples throats, the fact remains that some people do it simply to represent their selves. They do it apolitically, just to represent their selves. In other words, there are political and non-political reasons for the appearance of disability in second life; it is only when it goes too far, and becomes too political, that I object to it. For example, some people have tried to replicate having tourettes in s.l (you can guess how) in the online disability equivalent of blacking up. Some have stepped beyond representation in s.l into political agitationism. As I have maintained all week, it is the latter, not the former, which I object to.

Either way, the fact remains people do it. People have started to write about it, academically. I don’t think it can be ignored. Indeed, look at what people said about film back in 1895, or the net in 1985. online cultures need looking into. How do people chose to represent themselves? What is the relationship between this and other traditional media, like film? Does this, in a way, relate to cinephilia in our relation to the screen?

Ok. I’ll shut up about this soon.

Some of my readers will probably be bored of me going on about this, but I reserve my right to use my blog as an online prefrontal lobe. While I believe political agitationism for its own sake will only exacerbate problems for disabled people, there is something to be said for political activism. After all, how else can the problems we face be solved? While many problems have been solved over the past half century, we still face one or two biggies. Special schools, for instance.

The problem is, where do we draw the line? I still say that we shouldn’t draw attention to our disabilities for specifically political motives: to do so would be crass exhibitionism which will only divide us further from society and increase prejudice. For example, some members of DAN make a point of making a fuss of every small infraction of etiquette, and draw more attention to their disability than perhaps they should. What’s the point? Under no circumstances should people try to hide their disability, but some people take it too far by deliberately highlighting it. The problem is, where to draw the line? I know we live in a diverse community, and that is worth celebrating, but when taken to an extreme, the overt refusal to conform becomes counterproductive.

Now I know a little about nonconformity. How can society ever change if we all adhere to the strict codes and mores that it imposes upon us? Sometimes, stirring shit up is what is needed – we need people to walk across campuses in zentai suits, go to discos as fairies, and to have disabled characters in second life. You cant make an omelette without breaking eggs (or in my case, saucepans, cups and whatever else is in the kitchen). Everything – gender, ability, everything – is just a grand narrative to be reread. The question is how do we do this without causing more problems than it solves?

With my own activity, the buck stops with me. I don’t care if people think I’m a freak; I think it’s cool. It also has nothing to do with disability, so people aren’t likely to generalise: this cripple is a transvestic freak, therefore all disabled people are freaks’. Hence my sort of nonconformism is benign; it might even be productive in the way it breaks stereotypes. On the other hand, inasmuch as A) they are in a way meant to represent all disabled people, and B) centre their (rather more direct) nonconformism around their disabilities, their activities, it seems to me, are more likely to impact negatively on the wider disabled community. it seems to me that organisations such as Dan break eggs for the sake of it. By being so loud, obtuse, so ‘in your face’, they only ostracise the wider community. They may want omelette just as I do, but think it should be made by cracking eggs with a sledgehammer, and cooking the damn thing with a rocket engine. The result, I fear, is a few broken eggs amid the wreckage of the kitchen. Such direct, forceful action, such nonconformity without thought, seems to me to cause more problems than it solves.

Tonight I’m having a rant. Certain parties from within the disabled community – whom I chose not to name – have opted to label me as something of a traitor to disability rights and politics in my rejection of disability pride. Needless to say, I profoundly disagree with them. My point over the last few blogs was simply this: given that the disabled are such a disparate group, why should we be proud for the sake of it? Is there not a contradiction in the way we seek equality with all other people, yet continue to ostracise ourselves by adopting a politics of ‘us and them’? we demand to be treated the same as everyone else while some of us deliberately draw attention to what sets us apart for political reasons. We have adopted the ‘social model’ which states that we are all just as ‘normal’ as anyone else, and that if various societal and environmental factors were overcome we would be able to flourish, yet, in the name of ‘pride’ or whatever, we brand ourselves as different. Why is it that when I point this out that some people brand me a traitor, accuse me of hating disabled kids, and refute my right to be a role model for Onevoice?

For the record, I do not hate anyone; my work with Onevoice makes me extremely proud – proud of myself, my fellow role models and the young people, not of some loosely affiliated group. I’m proud because 1voice actually makes a difference by showing the kids they have true potential. People should be proud of their selves, their achievements, of their friends and family, not some loosely affiliated group which we are, in a way, striving to disband.

Does nobody else see the irony in maintaining a pride in disability alone, while striving to be seen on the same ‘level’ as all other people. the difference between this and other subcultures is, in a way we are trying to irradiate it by simply being seen as ‘normal’. What’s so wrong in suggesting that?

It was exactly a year ago that I was in Newquay. That was a hell of a few days. I really miss those guys, you know – of course, I still see them every now aand then but not as much as I’d like. You know how much I relish te chance to go to Chester to see Charlie, or down to stoke to see Scott and becs. Problem is, the rest of the crew are so far away. Oh well, it’s just a case of getting organised and going to see them all. Joe comes home from the southern hemisphere soon, and I need to organise getting to his homecoming.

These days, most of my friends arre able-bodied. This isn’t surprising since most people at uni are AB, and that was my first real chance to make friends. I think this has effected my attitude towards the idea of a disabled community or subculture. Back at school, I firmly believed that we were a subculture – a subset of humanity. But as I mixed my friends became more diverse, of course. I still have friends who are disabled – Katie, james, Luke barbs etc – but whether one has a disability or not should be irrelevant. Usually belonging to a subculture effects one’s friendship groups. This isn’t the case with disability, and that’s another reason why I think the whole idea of a disabled subculture is dubious. While there are advantages in shating experiences and advice, thinking of disabled people as one separate group is frankly wrong.

There is something I would like to clarify briefly tonight. On Sunday, I showed how the idea of pride may be problematic, and I still maintain that I have no more or no less cause to be proud than anyone else, disabled or not. However, I’d still maintain that there is an ‘us’ – that all disabled people, while not being a subculture per se, have between them a network. We share certain experiences; we have struggles which we can only overcome together. The old refrain holds true: united we stand, divided we fall. In a perfect would, where all obstacles are removed to equality (from stairs to special schools) there would be no need for this culture, as we would all exist on the same ‘level’ as anyone else. With the right adoptions, and under the right circumstances, we would not be ‘disabled people’, but just ‘people’.

Mind you, I still think there will always be a need for Onevoice. To me, such institutions exist outside of these arguments. Regardless of whether we are a subculture or not, and outside of all arguments over pride, those kids need role models. After all, that applies to any kid, disabled or not. In a way, 1voice isn’t about disability pride or conunity, but showing kids that they have just as much potential, just as much of a right to be proud of theirselves as anyone else.

things have got way too heaavy around here the last couple of days, so in the light of last wednesday’s performance, and it’s subsequent brilliant result (you’ll have to ask charlie) I’m sending you here

I do not think I’m being traitorous in writing this, and nor do I think I’m erring from the social model as I understand it. While I am totally comfortable with being disabled, and at times it’s very cool indeed, there are naturally times when I whish I could change things. I’d love to be able to drive, for instance, as it would make going to see friends easier. Mind you, there are ways around this, so I’m not complaining. I like being me, and I’m proud of it.

To every problem there is, conveniently, a solution. I cant walk far, so I have a wheelchair; I can’t talk clearly so I have a lightwriter (called Colin). I therefore exist in the world upon the same level as anyone else, neither inferior nor superior. I’m perfectly happy with this state of affairs,

However, I’ve been thinking recently about this pride jazz, and now think that disability pride is not as simple as it would first appear. I’m proud of who I am – of my achievements, my degree, my work with one voice etc. I’m proud of my family – mark’s doctorate, Luke’s degree etc. I’m proud of my friends – Charlie’s work as a teacher and her performance on Wednesday; Emma’s work as a councillor for school kids; Kate’s work in drama; steves adventures in America. But, if I’m no different to anyone else, why should I draw pride from the fact that I am disabled? I did not choose or earn it. It’s part of who I am, and its mostly fun, but why should I e any more proud than a non-disabled person given that the playing field is being levelled off by the adaptations I need. Should non-disabled people not be equally proud of who they are?

This brings me on to ‘the cultural model, about which I wrote a while ago. I am no longer happy with that concept: I still ” like being Matt, the guy who zooms round campus in a chair; matt who uses that odd contraption in the wes” and so forth, but given that any human being is different from any other, why should I be any more proud than anyone else? Yes, my chair is cool, but so is the ability to run. This would render the need for a cultural model moot. The only need for it is to enable one to internalise difference, which is ultimately divisive and self-destructive. In other words, I have better things to focus on than the fact that I am disabled. For the disability rights movement to adopt a cultural model would mean putting up barriers to the rest of society, and truly taking up an ‘us and them’ position. In short, it would be the very antithesis of inclusion. The concept that one should be proud of disability just because one is disabled feeds the concept that one is different in terms of value. I may do things slightly differently to most people, bur why should this in and of itself give rise to pride? All human beings can and should be proud of their selves. If we are all equal, our pride in the disabled community should be extended to pride in all of humanity.

We now return to yesterday’s subject of second life. It is a game where anyone can be anyone, so why should people chose to appear disabled? After all, it’s programming cannot replicate the effects of disability, and indeed all people on second life are given superhuman abilities, such as flying. You could argue that it is pride in being disabled, but surely then this would show a severe lack of imagination: why not chose to be someone else? Why not experiment? In a truly level playing field, why chose to be different? Why segregate yourself, especially when we are striving for inclusion? It does nothing but maintain division and prejudice, rather than breaking them down. In second life, I’d be a seventeen year old gymnast, not a 25 year old guy with cp. This does not mean I want to change in real life, just that I’d let my imagination roam. Plus, this way there’s a better chance of barriers breaking down if and when my fellow players discover who I really am, instead of maintaining that barrier within the game (cheers Luke).

Similarly, I have heard that several people in the disabled community have chosen to accent their disability, to make it more visible. Now, there’s a difference between not trying to hide a disability, and deliberately drawing attention to it and highlighting it. I am not ashamed of the fact I have cerebral palsy, so I make no attempt at hiding it. It’s just part of who I am. But I think to deliberately draw attention to it, again under the excuse of ‘disability pride is counterproductive. It is one thing to make no attempt to hide your disability, quite another to draw attention to it. The former is celebrating diversity, the latter is ramming it down peoples throats in a misguided attempt at political agitation. I freely admit I may be accused of doing this myself with my cross-dressing, and sometimes joke about it ‘giving people a real excuse to stare’, but the truth is this is just one semi-political motive for my dressing. I dress more for comfort, for fun and other things than for the sake of disability politics. It’s true it highlights difference, but its also true that many non-disabled men dress too. Thus the two are different. To deliberately draw attention to disability in the name of ‘pride’, as a cultural model would do, as some do in s.l and reality, rather than simply letting people notice it in the background, raises more barriers than it breaks down.

I rather like clubs. They’re fun. Some of my favourite memories have concerned clubs, such as the club we went to after graduation, or the clubs in Newquay. They may not be everyone’s cup of tea, and sometimes I’d rather stay home, but when you go with a load of your friends, and you’re all dressed up, there’s nothing greater.

Perhaps I have a secondary motive for going clubbing, too. As a disabled person, I want to live as normal a life as possible, participating in as much as possible. Moreover, I think it important that people see me do this – how would people realise that we crips can be as reckless and carefree as anyone else? Simply to stay at home wouldn’t just be boring, it would be perpetuating a negative stereotype of disability. At the same time, people shouldn’t think me brave for going out – it’s just normal. Having said that, I think that my presence in a club would have the effect of breaking down stereotypes; certainly, one or two of my uni friends have told me how I helped change their minds upon issues relating to disability. I reckon our presence anywhere, clubs, pubs, university bars, would break down barriers. What’s more, we shouldn’t hide who we are – to try to hide dribble and uncontrolled movement would defeat the object, as would not dressing how you want. I say if people can’t tolerate a spastic in a fairy costume, fuck them. Note the fairy costume is just my personal addition.

Now, I’ve been hearing a lot about ‘Second Life’ recently. This is an online world which I suppose is akin to the Sims, but where every sim is controlled by a person behind a computer. It’s apparently serious business, with real money exchanges. Interestingly, very interestingly, disability exists in this world. Why shouldn’t it? People want to portray themselves, be themselves in second life; why shouldn’t it be as diverse as the real world? It’s great, isn’t it?

I’m not completely sure it is so brilliant though. Yes, second life should be as diverse as reality, but, paradoxically, that might be reinforcing negative stereotypes. That is to say, I’m not sure that you can argue that disability portrayal in the s.l is equivalent to disability portrayal in the real world, as some people have. This is because the s.l portrayal of disability is simply an avatar in a chair, albeit a stylish one. To me, this is not the grand breaking down of barriers as some seem to think it is: given that only the photo* can show the Lacanian real, only it can truly reflect reality on screen. In other words, in order to get to grips with the reality of disability in an artistic framework, you need to use film. Yes, it can be described linguistically, and I’ve seen it done so with panache, but to me, only the photo can re-present reality.

Hence, in terms of breaking down stereotypes and barriers to do with disability, something like s.l could be counterproductive inasmuch as they present a sanitised, cut down version of crippledom. An avatar is not a photograph, but a computer-generated facsimile; it therefore does not dribble, or grunt, or have uncontrolled movement. The point is that, while I have no objection to people with disabilities using second life, I really do not think that one can draw parallels between my clubbing experiences (that is, physical, real events, which of course arent exclusive to me) and the appearance of disability in second life. On top of the fact that disability in s.l is sanitises, there is still the fact of the barrier – users remain at home behind their computers. There is no actual physical contact, which in a way means that stereotypes are in fact reinforced. Hence, to hail the appearance of disability in second life as some momentous, brave step, I think is wrong. At the end of the day, s.l is peopled by users behind their computers, for the barriers to break down, there must be actual physical contact or accurate portrayal. In second life, you have neither. Moreover the fact the fact that users are innately separated, kept at home, may even help perpetuate the negative stereotype pf the ‘stay at home’ cripple. It may be good fun, but, in terms of disability portrayal and rights, it is nothing compared to actually going out, physically participating,, and having a great time with your friends.

*Here I’m using a Barthesian perspective.

When I was about four or five, I remember my parents sitting me in front of an old bbc computer. It had a big black screen, and a huge white extended keyboard. I remember being struck by the stupidity of this keyboard – why did it have letters jumbled up, and not abc? Anyway, after I had figured out this stupid keyboard (before that, mum had been making me boards with pictures to press) I figured out how to write stories. Doing so seemed to please my parents.

Thus it was on an old bbc computer that I first learned to express myself. Looking back, the bbc isn’t much more than a tin can, especially compared to today’s sophisticated machines, but it stood me in good stead. It taught me that odd arrangement of letters that I still use today with my lightwriter and pc. In a way, I owe it quite a bit. It’s creators are apparently reuniting in the London’s science museum to celebrate it. I wonder if they realise what impact their creation really had.

link

Mrs Jones just dropped me off at home, albeit a little later than planned. Initially I had planned to be back around noon, but events conspired against that – we were late up, Mrs j had work to do, I lost track of time talking to my friends. I should have phoned. Sorry dad.

Anyway I had great fun last night. Charlotte invited me to see a production of Moulin rouge at the school she now teaches at, so reluctant to disappoint my friend, I went. The performance was quite amazing: Charlie teaches music, and was in charge of the music. As I saw last year with gospel choir, Charlie seems to have the ability to get a tune out of anyone, and she proved that again last night. Mind you, poppy, C’s younger sister, in the role of satine, is an excellent singer, as was the male lead. Hell, it was all very Impressive – they even had a working model of a red windmill. Moreover, I learned today that Charlie, armed only with the piano music, had transposed the entire score by ear. Her industriousness and productivity put me to shame.

I always like going to the burrow, as I call it. Its so homely, so welcoming. It’s the type of place you don’t want to leave,, and I almost took Mrs j up on her offer to stay another night. Charlotte’s generosity is almost infinite, a trait I think she definitely inherited.

either way, I’m glad I went, and certainly hope my next visit isn’t too far off. Going there, to that crazy laberynthine house makes me feel good about the world