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 am not naive

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.

and theres more

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.

the two types of nonconformism, or the best way to make an omelette

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.

for the record

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?

newquay 1 year on

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.

more on pride

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.

hey sister go

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

iis disability pride useful?

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.

nothing can replace reality

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.