Let me start this entry by admitting that my parents were right about two things: they were right when they said that I am crap at planning stuff, and they were right when they said that Hebden Green was a waste of time. Both of these things I realised, once and for all, yesterday.

I had been invited to a meeting of a local disability network by Becca – who, I should say, is fast becoming a good friend of mine – part of whose agenda concerned inclusive schooling. I am becoming increasingly aware just how sinister the segregation between mainstream and ‘special’ schools is: report after report shows the gaping divide between these two types of school in terms of quality of education. Socially, the fact that students with special needs are taken to completely separate schools, using completely different school busses, is reminiscent of apartheid. Thus, when Becca invited me to a meeting where this issue would be discussed, I thought it a valuable use of my time to attend.

The problem was getting there. I had to ask Luke to take me, which, noble man that he is, he agreed to do, even though it meant him taking hours out of his time. This was not helped by the fact that the directions and map I got from the internet were as accurate as using a toothpick for a compass needle, and to cut a long story short, we arrived over an hour and a half late at our destination…

…which, thanks to the beurocratic nature of such organisations, meant we arrived during an opening discussion on how minutes were taken. We entered the meeting hall, and instantly were invited to sit next to Becca and Katie, who I had communicated a lot over the net with, but had never actually met. I must admit that I am very much impressed with Becca’s vast knowledge of the issue, her resolve, and her determination: due to Katie’s condition, bringing them both up to Manchester from north London must not have been easy, either. Nevertheless, we had arrived well before the discussion on inclusive schooling was to begin, which meant I had time to get a cup of tea, and assess my surroundings.

Most people there had disabilities of various kinds. I think me, Katie, Becca and Luke were the youngest people there. Gemma, an highly articulate woman with CP, was the chief speaker, but Felicity – an AB former teacher – seemed to be chair. However, it soon became apparent how much in fighting and petty beurocratic squabbling there was even within this meting of some ten people. Myself, Becca, Katie and Gemma seemed united over the issue, which, since we had all experienced the special school system to varying degrees, I think is quite natural, yet various other (older) people seemed only to care for their particular social subgroup, and, it must be said, were cantankerous almost to the point of being an obstacle.

Nevertheless, one of the outcomes of this meeting was the idea that we should set up a specialist conference about the issue of inclusive schooling, with workshops about the various aspects of the issue. There are many hurdles to overcome, both physical and social. On the physical side, there is the problem that many existing mainstream schools are not adapted for disabled pupils – there are stairs where lifts are needed, doors are often too arrow for larger wheelchairs, and so on. However, it seems that the social problems involved are far more insidious: although what physical problems there are can be overcome by making adaptations to the school, whether they will be made by a council which does not seem to want to make them is another question entirely. During the meeting, Becca pointed out that only one English borough had signed an international accord on inclusive schooling. Time and time again, such councils find reasons – a more appropriate word would be excuses – not to implement inclusion, a fact which this report clearly shows. When governments choose to send kids to different schools, for whatever reason, there can only be one term for it: apartheid.

Like the struggle in south Africa before 1992, the struggle to make education truly inclusive will be long and hard. But yesterday, I vowed to see it through, helping Becca and Katie however I can.

The other day, I was looking up stuff about brian lara, tthe west inddies cricket captain. Do you know he once scored 500 not out? I mean, that is mucho impressive.

[btw england just got lara out. its 178-4] anyway, I found a site which suggests cricket isactually played in the states! ha. I wouldn’t have thougt they had the ppatience, but this generalisation may be wrong.

yet, on second thoughts, the generalisation may be accurate: test-mach cricket is quite a slow sport, whiich requires patience to play. if american forign policy is anything to go by, the americans seem too eager to have tthingshappen at that moment. they rush all over tthe world, seeking members of a loose organisation, rather than waiting for them to make a mistake. if u set your field too aggressively, u sttand to get struck by ttthee ball on your head.

link

It’s a nice day, and should the cloud cover we’re currently experiencing go, it should be a scorcher. Pretty much the first this year/ on days like this, I like to get out and about, for while I can spend hours behind my computer, surfing the web, I like to get out and about. I woke up this morning and thought it a perfect day to go out on my F55 wheelchair. While I am fine walking about the house, where there are plenty of soft things to land on should I fall, going outside is another question. The answer is the Defiant, named after a ship in star trek; a fairly nippy little chair which allows me to roam independently as far as Swettenham.

So, I got up, dressed, and during breakfast asked Luke if he could get my chair out of the garage. He asked me if I had dad’s permission. This is a problem – I have no doubt dad would say yes, and that it was fine for me to go a-roaming, provided I had made a blog entry. Recently, he’s been reminding me to make more entries for some reason – I think he just wants something interesting to read when he’s at work.

The problem isn’t that writing blog entries is a chore: it can be very interesting, and somewhat relaxing. When I am writing about something which interests or angers me, writing is very easy, and about three hours later, I have a page of fairly eloquent text to add to my blog. For example, a recent entry on inclusive schooling was banged out one afternoon after a conversation on MSN Massager with my friend Becca. I feel very strongly about that subject.

The problem, however, is finding a subject interesting enough to write about. I could go off on one of my political rants, but they might be getting lame; I could launch into a tirade against bush, but I think most people who are reading this know what the W in his name stands for, and anyway I need to read up on the 9/11 report before I can write again on that subject with any authority. I also need to read the Butler report.

Which brings me to a second subject which I could have a good rant about. This week saw Tony Blair talking in the commons with more authority than he has had in quite some time. His party seem to be behind him again, and chances are that he’ll regain some of his popularity. The question is, how did Blair do it? Of course, he is greatly helped by the Tories being in such an amusing shambles: most media commentators say Blair trounced Michael Howard in the commons on Tuesday, and I personally like to think his days are numbered as Tory leader. How, then, after Blair lead the country into a deeply unpopular and barely legal war, can he be allowed to escape? When labour’s popularity should be at an all-time low, the opposition leader insists on making ludicrous comments along the lines of “if I knew then what I know now, then I wouldn’t have supported the war”, and then going on to say that he still supports the war. Eh? How can anyone make such a stupid comment, and expect to win the confidence of voters? Its quite funny, really.

Also, I heard quite an alarming report this morning on the BBC which stated that global warming posed ore of a threat to us than terrorism. This I do not doubt, and, like many people I find it worrying. We need to do something about global climate change. Why, then, do conservatives, and particularly conservative Americans, ridicule those people who care about the environment as hippies? They seem to thing their right to drive hugely polluting vehicles outweighs their duty to the environment. They care ,=more about the war on terror because they get to shoot things.

There are many more things I could rant about here, like affairs in Israel and Africa, and peter mandleson, but as I said, it’s a lovely day, and I’m off to watch the cricket!

mums away on busness, and mme and luke were instructed to finnish off some bacoon and egs in mum’s filthfydirty fridge. ok, so .it eemerges that: a. luke is, gor some odd reason, watching his weight, and only i will be eating the fry up. 2 luke has never made a fry up before

INGREDIENTS

eggs – 2.

bacon – 2 rashers button mushrooms – lots butter – 1 shitload milk

I ate this in about 15 minites, and guess what! I wont get fat! I wobble so much due to my cp that i don’t ever put on weight! hahahaa! jealous yet?

🙂

I’ve been looking at the types of film in production recently, and there seems to be a distinct trend towards the fantasy and superhero genres. This interests me, as it may reveal things about the collective western mindset.

The two most obvious examples of recent fantasy films are the Harry Potter (HP) Series and the Lord of the rings (LOTR) trilogy. Both have strong central characters trying to save the world from a force of evil, but in this there is nothing special – the good versus evil theme is centuries old. What is interesting to me, however, is that they reveal a desire to break into a fantasy world where things like good and evil are well defined, and can be fought for or against. The division is Nott so clear cut here, and, as SLS points out, the lines between good and evil are blurred; a man seen as evil can be a force for good.

As the books upon which they are based, and the films themselves, were created and were in creation before 9/11, I doubt that HP and LOTR can be seen as truly reflecting of the current social mood. However, the current wave of ‘superhero’ films can be seen as reflecting of the status quo as they were created after 9/11. they too paint a world where there is a battle between good and evil, but unlike Frodo and Harry, their main protagonists have overt superhuman powers, or at least powers which excel their peers’.

The recent superhero films such as Spiderman are all about people with extra powers coming to vanquish the force of evil. We can read into this a desperate need in popular culture for such people, which reflects a certain nervousness about ourselves. Yet, in post-9/11 culture, if we read the forces of evil to be terrorists, we can see almost the exact opposite: we, or rather America, now sees itself as a force of good, and one with superhuman powers at that. Moreover, it now sees good and evil as two absolute extremes, rather than taking the more liberal stance that they are blurred, and this I find disturbing.

We have already heard bush refer to ‘’Evil’ in his speeches. This is juvenile: while someone may be misguided, he or she will always act for what they see as good. Hence, outside of fiction, the idea of evil is subjective. But bush is fuelling the idea by using such language that America is a force of innate good fighting the evildoers.

We’re living in an action movie! Aaaaaaargh!

It has been quite some time since I had a political rant, and, like the London busses of cliché fame, two subjects arrive for me to discuss. The first is obvious: The Butler Report.

‘Rant’ might be too strong a word for me to use here, as, unlike Hutton, which was so blatantly one-sided that one couldn’t help but cry “whitewash!”, Butler seems more balanced. Granted, it did not openly blame Blair, or any cabinet or intelligence official, as many expected, but nor did it exonerate them. Blair will receive much flack over this, especially from the conservatives (who, as any fool can point out, supported the war in the first place) but he will not loose his premiership over this. At least, not just yet, anyway.

The question, therefore, is “How?” Yesterday in parliament, when I half expected him to announce his resignation, he came out fighting: he eloquently accepted the findings of the report but strongly justified the war. Indeed, his prohibition could now be stronger, as Butler accounted for the lack of WMD in Iraq by citing muddled intelligence, not a lie on the part of the prime minister. Butler also dismissed claims that this war was all about oil. Thus, because this is a document that we all can respect due to it’s balance, Blair can stay to fight on. While he has certainly lost respect in some quarters, he may yesterday have gained some in others.

Nevertheless, I still do not trust him: the fact remains that, as Lord Butler noted yesterday, the September Dossier missed out several qualifying phrases from the intelligence it was based upon, and we would therefore lied to by omission. Blair’s forward was also disproportionately strong. I would feel very uneasy about voting for a man who would go to war on such loose ground, and, what’s more, one that would follow a blatant homophobic bigot so loyally. Butler dismissed the supposed links between Hussein and Al Qa’ida, making bush’s position barely tenable too, especially after Ashcroft.

However, although one can sigh at Blair (to say the least) and scream one’s head off at bush, both have a modicum of respectability. Neither, for example, denounce whole swathes of people. Bush may be a red-neck, but he is not a fascist.

In other words, there a set of people, here in Britain, who worry me more than Bush. People who I have no respect for, yet pretend to be a political party: the BNP. There is a documentary due out tonight about these people. To be fair, one must question, as an impartial viewer, whether the BBC is biased on this front: it has a somewhat leftist-liberal stance, but as all major political parties of both sides of the spectrum dismiss the BNP as little more as a pack of barely potty-trained hooligans, we can accept the BBC’s judgement. Indeed, I might point out, as an aside, that Butler seemed to confirm the BBC’s pre-Hutton claim that the government did indeed ‘sex up’ the dossier, if just by omission.

Thus, if we can take the bbc as not having any innate bias on this – and I believe we can – then, small as they may be, I am very worried about the BNP. They espouse the most abhorrent of views, it’s leader, Nick Griffin, denouncing Islam as a “vicious wicked faith”, while trying – and failing – to project a veneer of respectability.

Thus, just as I hold Butler to be the pinnacle of political refinement – the hefty report presenting both sides of the argument, before coming to a well-rounded conclusion, I hold the BNP to be the antithesis of this: neither balanced or respectable. I find it interesting that we are to see these two faces of politics within 48 hours.

apparrently, my website was down yesterday and today. according to kyle, its now fixed. I simply gad to go grunt at my bro, and wave my arms at my pc. Luke thereafter made a loud, high pitched exclamation which sounded likee YOU MORON, and fixed the problem. so, if your reading this, well done.

also, i’ve began to experiment with a little art. Using my pc to merge 2 pictures together. this was inspired by reading “the art of the fellowship of the ring”, a very interesting book about the design process behind the films. maybe i can put some art up here eventually.

[quote]’Frasier’ Star Lands Monty Python Role

Former Frasier star David Hyde Pierce and Rocky Horror Picture Show actor Tim Curry have been named among the cast of Eric Idle’s new Monty Python musical.

The acting pair and funnyman Hank Azaria will take the leads in the Broadway-bound production of Spamalot. The King Arthur legend spoof, which became cult Monty Python film Monty Python & The Holy Grail, will be directed by Oscar winner Mike Nichols. Pierce, who played Frasier’s brother Niles Crane in the hit sitcom, will play Sir Robin and Curry will play King Arthur. Azaria will take on the role of Sir Lancelot. The show is set to debut in Chicago, Illinois, in December, before beginning a Broadway run in February. [/quote] ni!

sttolen from imdb

I just read this bbc neews report. apparently,blair has been urged not to resign by ministers after being on the brink of doing so. with leaks of the butler report not sounding favourable, and the ennet report devistating the CIA inteligence over iraq, is this blairs last week at no. 10?

ccould welll be, but leaving office in the middle of the pre-election run-up, with debtes welling over education and the NHS would leave the famous black door open for michael howard. then we’d really be screwwed!

On this site, I have discussed many themes surrounding disability. In my essay on Harry Potter and disability, I discussed how inclusion 9of disabled characters in literature can help overcome many of the boundaries disabled people face, such as prejudice. In my short story “bionic matt”, I explored the possibility of finding a ‘cure’ for CP. However, both of these pieces rely heavily on the medical model of disability, which holds that a disability should be seen as a medical condition, and disabled people should be treated as patients. Many people hold that it is, in fact, society, rather than biology, that disables a person: it is society that refuses to install ramps in buildings; it is society which refuses to employ us so we have to rely on benefit; and it is society that sends us to separate schools.

In the piece on Harry Potter, I assert that there is a need for thee segregated schooling of students with special needs. This is not exactly true, and this is the issue I want to deal with in this entry. Indeed, the story on which that essay was based concerns a disabled student going into mainstream entry, and the protagonist’s disability is used largely as a dramatic tool (to counterbalance Snape), and not as the central theme. The point is, there is a huge benefit to be gained from inclusive education, and the risks of not implementing it are truly dire.

Indeed, I am not a fan of the special school system. I left my school with a handful of GCSEs and one A-level, to my knowledge the only student who did A-Levels at all. When I visited my old school this Easter, the news that I was going to university was greeted as if it were something truly rare. Special schools, it must be said, are not places where academic achievement is encouraged: with some notable exceptions, most of the examination reports from special schools are abysmal. For example, most people in my GCSE year did not achieve above grade D.

The case for inclusive schooling is therefore very strong indeed. It is not only beneficial for the disabled student but for other students too, as it helps to break down prejudice. Any barriers soon begin to break down when this segregation is halted. In Berlin, I flourished: all those around me accepted me for who I was, and exactly the same thing will happen when all children are taught together.

However, there will, of course, be problems in achieving this. Nature has not made the playing-field level, and disabled students will always need help. One way of doing this is providing them with Learning support assistants (LSAs), who will help a student do a thing he or she cannot, such as taking notes. However, LSAs are only useful up to a limit – they cannot, for example, make a child friends – and nobody wants to be shadowed continuously throughout the school day. Disabled students should be encouraged to be as independent as possible.

There is a conflict,, therefore, between a need for help and the need for independence, and this is solved through technology. Mobility problems are solved through the use of wheelchairs, communication problems are solved –although addressed would be a better adjective – through the use of communication aids.

While mobility has a bearing on education – after all, one needs to get to class – it is the latter field that interests me the most, and has the most bearing on education.

If one cannot communicate, there is no way to assess one’s ability, which causes the education of many disabled students to suffer greatly. For example, getting my Lightwriter when I was 11 meant I could communicate more fluently, meaning I could do GCSE English and A-Level English at the comprehensive near my special school. Yet I was lucky: to my knowledge, I have no learning disabilities (save for the one that prevents me learning that beer is bad), and I was reading and writing by the time I was 5 or 6. Hence I can access a communication aid with a qwerty keyboard, and can thus use the full English lexicon. What places students at a severe disadvantage is when they are not literate enough to access the normal writing system, so a series of alternative writing systems has been invented.

As a philologist and communication aid user, these systems interest me immensely. It must be said that they strike me as very limited as an alternative to normal writing, but that does not necessarily matter. Bliss, for example, is made up of 2000 symbols, each representing a word. Although the combinations of symbols one can use means ones vocabulary is virtually infinite, this still compares starkly with the 500,000 words of the Oxford English Dictionary. How can a student be expected to learn efficiently, or respond articulately to media if he or she only has access to 2000 words? Where at all possible, literacy must be a priority. Yet here again we see a failure in special schools, because they teach kids with learning disabilities to use systems like bliss. It would be, thereafter, harder to teach a child the normal alphabet because he or she has grown up using symbols.

Writing systems aside, how a child actually communicates with his teachers or classmates is another problem. My Lightwriter – in my opinion, the ideal device – is simply a qwerty keyboard, 2 liquid crystal displays, and a voice output system. Using this, I can say anything, from ordering German food to discussing the work of Tolkien. Yet the communication aids other children are given are not as versatile because they lack the physical or cognitive ability – special schools claim – to use things like a Lightwriter. Thus such children are ‘fobbed off’ with the simplest of communication aids, some containing no more than six words (unless more options are offered by an LSA). How can one expect a child to show the full range of his knowledge with only six words in front of him? On the other hand, some Voice output Communication aids (VOCAs) can store enormous vocabularies of up to 10,000 words, which, together with the use of a keyboard, mean a user can swiftly access the full English vocabulary.

There is a case, therefore, for teaching kids together, and with as little human assistance as possible. Disabled children are being failed by a special school system which does not allow them to access the curriculum properly. Many students with communication problems are dismissed as having learning difficulties, and so are not taught to their full potential. I find this state of affairs quite sickening, and I have decided that it is my duty to try to help.

just read this.

this professor-fellow is scary.

ok, we were sitting at dinner lst night, tallking about schools, when it emerged that tthe king’s school in macc – a public schoolwhich both mmy brothers attended had spent a whopping one million quid on…wait for it…a pipe organ! HAHAHAHAHA! stupid toffs! they could havev bought phek knows how many books, computers, even a pacific island, but no, they bought a pipe organ – a maachine capablle of giving the entire staff faculty simultanious bblowjobs, probably because tighter paedophile laws mean they can’t get them from the students!

seriously, though, contrast this with the state sector, many of whose schools strugggle tto find funds for books, and one starts to feel quite sick. why should the public sector be at lliberty to waastte such huge suums?

also, i justt checked back at kittyradio .com, whhere I postted quite rregularly aat one stage, only to ssee that it was down and needed to raise $5000 for a new server. too many ranndom people talking drivvel. HAHA

Why is It that I get so inflamed each time I open the sunday times? this week, the news review supllement had an article on aborion. the odd thing is – and it drives me nuts to admit it – I find myself siding mostly with the anti-abortion Right in this debate. There are times when abortion is needed, no doubt aabout it, and a woman has an innate right to control her body, but what I object to most severely iss when kids are aborted because they have svere medical contions. some people have argued that it is “more humane” to abort such children rather than making them live life in a faultty body.

WTF? firstly, there is a very small gap between this and killing kids after birth, for ‘euthinasia’. this may have meant my own death, and that of those of my friends. sometimes,, in the evening especially, I get very tense and my body is almost uncontrollable. Objectively, this could be seen as ‘suffering’ (although the best cure is a trip to the beer cabinet). would the pro-choicers argue that it is more humane to lett me die? and what of my terminally ill friends, or those like Kirsty (see below). these people live good, happy lives, and are no less deserving of life than anyone else. I have written extensively on the fact that I hold these people in the hightest esteem. Thus, to say that it might be more humane to abort kids with medical conditions is utter bullshit.

Secondly, where does one draw the line. Some women chose to abort kids because they have things like cleft pallets. this is curable for crissake! just because a kid might be a little uglee doesnt mean it isnt a good kid! then what? aborrting al kids with anythhing other than blonde hair and blue eyes? thirdly, who the smeg are we to decide who lives and who dies? babies all grow into kids with the ability to chose, and they, I suspect, would chose to live.

there are, however, prooblems with tthe above. forcing a mother to carry a kid to term if she doesn’t want to would breach her human rights: the final say must lie with the mother. moreover, if a child, oncee born will live in an unnstable environment, e.g a broken home or with abusive parents, then abortion might be the best option.

so, which is it: a babies right to live or a womans right to chose. I want to side with the first, as I feel most strongly that aborting kids because they have disabilities is wrong. but then…….aaaaaarrgh! i give up.

How does one sum up the best week of my life? Let me begin by saying that it was probably very bad for me: I sat in my chair and got pushed everywhere; I was fed everything; I did absolutely no exercise or physio…

So, Berlin ruled! I’m not sure where to start. Firstly, I should say the staff from college were fantastic. I was very impressed with my PA, John White, who managed to cope with me very well, although perhaps his feeding technique was perhaps a little too slow for my liking, and sometimes he seemed to forget he needed to put food in my mouth too! He coped with the usual footwear, bedtime and toilet problems very well. Also, I like the fact that the other staff sometimes chipped in to help – I dined with the staff 2 or 3 times, as me and john often seemed to stick with them, and they all seemed to chip in, shoving the odd spoonful into my mouth and wiping my face etc. I especially liked the fine meal we had on Sunday evening of three courses with spirits afterwards.

Fine meals with the staff aside, the major fun was had with my fellow students. While John is a top bloke, I felt it wise for us to spend some time away from each other for both our sakes. I really enjoyed sitting in the bar with the guys, buying and being bought countless drinks. Usually in such situations, I like to sit back and just observe, but this time I really felt part of the action – watching thee pool, talking, laughing. Often people who I hadn’t spoken to came up and steadied my drink so I could sip from it. There was a huge Cuban cigar being passed about at one stage, and I was offered a try. Although people still made allowances for me, it was like my CP didn’t matter: I was one of the guys, and I felt totally free.

One night, having spent the day with john and the staff at checkpoint Charlie, we arrived back at the Generator, the hostel where we were staying. One of the guys approached me:

“hey, matt. A whole load of us are going out. Wanna come?”

“Sure.” I went upstairs where john changed me into my good button-up shirt (I can never do buttons) and sprayed some lynx over me. Within 30 minutes, there were about 40 or 50 of us, going along the streets of Berlin to a night club. No “adults”, no restrictions: even stairs weren’t an obstacle as about 5 of the lads would simply pick my chair up, me inside, and carry it down. No problem! With surprising organisation, we all made it to the club, where I danced my head off. People seemed quite happy to steer me along the dance floor like a maniac, stopping now and then to feed me a swig of beer. I felt absolutely elated.

However, when we tried a similar thing the following evening, it didn’t go as well. I was being pushed along by Hayley and Janine and the girls, and suddenly most of the boys deserted us. We got to the bar, where we waited, and waited, but the boys didn’t show. There was no way of those with me being able to get me home via the tube, so we rang a taxi – john had lent me about 20 Euro for just such an occasion. Thus about 4 of us (me and 3 girls – hehe) took the taxi home, leaving Hayley and the others to walk back (should I tell Kyle what happened then, hayley?). once home, I was able to extract a reasonable apology from rich and the guys who deserted us.

For any wheeled readers I might have, I should point out that Berlin is a nightmare to get round: most tube and train stations have lifts, but many older ones do not. It was often simpler and easier for me to get out and walk up the stairs. One evening, when me and John were making our way home, we found the lift we needed was totally broken. After about half an hour of head scratching, we decided to get a taxi home: there was no way John could handle me and a heavy wheelchair alone up several flights, especially as I was rather tired.

The trip itself went well. Most museums, bar the one at checkpoint Charlie, were fully accessible, and I could manage the stairs at the checkpoint. Although there was rough ground to walk over, I enjoyed the trip to the beach, which was rather like a certain scene from James bond….ahem.

Oddly, though, our trip to the concentration camp was not as moving as I thought it would be: one couldn’t see the physical evidence of death – the gallows, gas chamber etc had been destroyed by the invading Soviet army in 1945, and all that remained were a few huts and exhibitions. At one point, however, when I saw the archetypical Auchvitsian gatehouse with its clock tower, it hit me that below those gates had passed 200,000 people never to return. All I felt was numb.

So, save for the concentration camp, trouble with trains and John’s bad jokes, it’s been quite a week. No doubt I have left details out, due to too much brain-pickling, but I assure you I lived every moment of it. It is sad to think that, because of university next year, I probably will never see the students who came with me again

As part of my debate with the folks from http://www.grouchyoldcripple.com this morning, I needed to find the proper usage of the term ‘atrophy. Remembering the term had something to do with Muscular Dystrophy (MD), I plugged the term into google, and came across this Reuters report. It’s about a poet, Mattie Stepanek, who died earlier today of an MD-related condition, age 13.

This boy – although he was indeed a man – apparently inspired America: he appeared on Operah, and spoke to Jimmy Carter. Reports say he had wisdom beyond his years, and this I can believe. Although we didn’t always get on, I felt my classmates back at school had a kind of wisdom: they saw their fate, accepted it, and simply got on with life. They are indeed braver than any soldier of Agincourt, the Somme, Ypres, or any battle. Reading the article, I thought of Andy Fox, as my mind frequently does, and how he could see any situation as it truly was. A man who did not deserve his fate, but bore it as if it was weightless.

‘he ain’ heavy, father, he’s my Brother.’

So, now Reuters has reported on something I thought was confined to the deceptively cheerful walls of Hebden Green School, or the writings of La Guerra: the dark side of disability; of grieving parents; of kids who deserve more. This subject used to make me angry – the day Foxy died, I came home and smashed up my room/ but there’s no point. Like Andrew Wheetly, Lee Donnelly, Phillip Littlewood, Dave Giles, Andy Fox and Mattie Stepanek, one just has to accept fate, which is even more sad.

The week after Foxy died, I had a speech therapy lesson. The speech therapist, Ms Hickson, whom I had known since I was six, often decided to forgo any structured therapy and just let me talk. This time, we discussed foxy.

”They’re all going to go, aren’t they?” I said. It was true – most of my classmates had some form of MD, and would sooner or later die.

”Yes” Mrs Hickson said. Then she did something unique: she broke with the school’s optimistic air and spoke with realism. ”Which would you prefer, Matt: to die young like Andy, or to live a long life in a body like Kirsty’s?” Kirsty had a very severe condition where she couldn’t walk, talk or move properly although her mind seemed to be fully functional. She would probably be placed in an institution after leaving school, and live a long life. Clearly, there were fates worse than Andy’s.

This is the darkness that pervades what I consider ‘my world’ – the world of disability. Yet within darkness there is always light. My friends always had a boundless kind of optimism. We would all do well to learn from them.

This is a story inspired by a article I read this morning.

—

I opened my eyes. The first thing I noticed, apart from a queasy feeling in my stomach, were the irregularities in the plaster on the ceiling. They were perfectly clear, like a perfectly white sea, turned upside down and frozen in time.

“Well I’ll be. It worked!” I said, to myself.

“Clear as crystal.” My father’s voice was a mixture of wonder and euphoria. He was not speaking to me, but someone else in the room. “Told you I could do it.” I heard Luke say. “all it took was a thousand lines of Perl and a few microprocessors.”

“and who designed those processors,, eh?” this was mark.

“Oh shut up you two!” said mum. I smiled at the realisation that I was taking my traditional role as spectator in my brother’s arguments. Old habits die hard.

“Quite.” I said “it just occurred to me that I can move my legs with greater precision than ever before, and unless you want me to kick both your arses, I suggest you shut up.”

There was total silence in the room. As usual, I was unsure that anyone had understood even a word I was saying/ I began again “I said…”

“we understood you matt.” Mark said. I heard mum start to weep. I smiled, and decided to try out a few things. Under the hospital coverlet, I touched my index finger with my thumb. “So far so good” I thought ”now for the others. One, two, three, four. Good. Now for the left. One two, three four. Excellent.” I lifted my head, and saw my family at the foot of my bed. They were standing there in silent awe, tears of joy rolling down mum’s face. “now this is rather cool”, thought.

I turned my head to look at the bedside table, upon which sat a glass of water with a straw in it, which I had drank front to swallow the anaesthetic roughly five hours before. A idea occurred to me, both mischievous and poignant. I lifted my hand from beneath the cover, and slowly it glided towards the glass, reaching up and behind me. I must admit it felt odd doing this: there were none of the usual tugs of tension, my arms did not feel as if they wanted to suddenly jerk back into the Moro position; all I felt was freedom.

The processors in my cerebellum were working. They had been implanted by Professor Tipu Aziz, whose pioneering work using computers to replace misfiring neurons successfully treated conditions like Parkinson’s and motor-neurone disease. Similar work had been done by Ed Tarte, of Cambridge, in the area f spinal chord injury. It was, however, my brothers who had posited, after I had made a particularly large mess one mealtime, that similar technology could be used to bypass damaged neurons responsible fore movement.

When quite large amounts of the brain have been damaged, for example, through oxygen deprivation at birth, surrounding brain tissue is gradually trained to replace the function of that which is lost. Such training is never perfect, and thus we get the decreases body co-ordination we see with cerebral palsy sufferers, for example. However, if neural implants could be used to replace damaged tissue, .recovery would be much better because, my boffin brothers suggested, the computer programming would be much more efficient than the tissue the brain uses to compensate with.

Of course, there had been some debate over the possible abuse of this technology. It had been argued that it could lead to a ‘bionic man’ being made. Others had argued that it could lead to a form of mind control, and I had been quite amused that bioengineers at the State university of New York had given one lab rat implants which effectively turned it into a remote controlled toy. Nevertheless, my family had felt, like the majority of the scientific community, that the benefits of this technology by far outweighed the dangers.

Thus these computers, tiny as a grain of sand, were calculating the trajectory of my right arm as I reached for the glass. I suddenly felt he cool container between my fingers and thumb, and knew, in an instant, how much pressure to apply. And then, in a moment that I had waited twenty-five years for, I picked the glass up, put it’s rim gently to my lips, and drank from it.

See Sunday Times magazine, 20th June 2004, p45

I was watching the news last night. Arab terrorists beheaded a man in Saudi Arabia simply because he was an American. I know I’ve been known to criticise the yanks here, but this man didn’t deserve to die. by doing this, the terrorists have shown they do not discriminate between combatants and non-combatants, thereby losing any scrap of moral superiority they ever had.

I refuse to believe in ‘barbarians’: no person can be innately violent, so any violent act must have a motive. Yet this rule has been breached by Hitler, Stalin and countless others. If man can be violent for violence’ sake, then these terrorists are indeed barbarians, as were the Abu Grahib guards.

What a disgusting war this truly is?!

I got an email from palinstravels.co.uk, which – as a Palin fan – is enough to make me smile for days!

[quote=”Michael Palin”]Dear all,

I apologise, grovellingly, for not having reported back to you for so long. I thought of making excuse like a severe case of YRMLS (Yak-Butter Related Memory Loss Syndrome) or simply that I’d fallen off a mountain onto my writing hand. The reality is much less interesting as it involves very boring things like writing deadlines and delivery dates.

Our last day of filming in the Himalaya was in early April this year, and as I have had to write the book in breaks between filming trips, over half remained un-written when I got back to London. With the help of my wife, who is getting better and better at ignoring me, and our three cats who say and do very little during the daytime, I was able to sit undisturbed in my room, watching spring turn to summer in the gardens of Gospel Oak and tap out a rough and ready account of 3,000 miles of astonishing travel.

Over in Washington, Basil Pao was working equally frantically, looking through his nine million photos for 300 which would be good enough for my book and a further 300 even better ones that would be good for his book.

Anyway, it looks as if the seven day a week, no alcohol before 7 p.m. regime has worked. Both books – Himalaya and Inside Himalaya by Basil Pao – are just about ready to go to the printers in north Italy, and we’re looking at publication in late September. I would love to go to north Italy and keep the words and pictures company as they churn through the presses in the shadow of the Dolomites, but after a short pause for breath I have to start work writing and recording the commentary for our six episodes. So that’s another summer devoted to the Himalaya!

What makes it all worthwhile is that we have some fantastic material, both written and visual, to work with, and as everywhere we went through was pretty difficult to get to, as well as new and strange to me, there is a real sense of adventure in the project.

The highest point of the journey was just over 18,000 feet (5,500 metres) and the lowest was on the very last shot of the series, floating out into the sunset on the Bay of Bengal. The mountains take no hostages. Conditions above 15,000 feet were always difficult, with lower oxygen levels making moving, breathing and sleeping more difficult. As we had once again set ourselves a lot of ground to cover we had very little recovery or acclimatization time and our ace BAFTA award-winning sound recordist John Pritchard, suffered a bad dose of altitude sickness and was hospitalized in Lhasa, Tibet. He’s now made a full recovery I’m glad to say. Both myself and Basil were struck down by a nasty virus that reduced us too coughing wrecks on one part of the climb. You’ll be glad to hear that all my misery was faithfully and unblinkingly recorded on film by our ace BAFTA award-winning cameraman Nigel Meakin.

All six programmes have now been edited down and I’m very pleased that each one has a distinct and different feel to it. Pakistan starts the series, and that’s very different from India, and Nepal and Tibet are both different again. Yunnan in China, at the far eastern end of the Himalaya is an eye-opener, and very beautiful, and Nagaland and Assam in north-east India are strange and lovely. To round off the trip, we have the high and the lows in Bhutan and Bangladesh, both fascinating places, but as different as chalk from cheese. Though the scenery is breathtaking, it’s the people we meet who, as usual, make the programmes work.

So that’s where it’s at the moment. Can’t give much more detail because we’re still fine tuning everything, but I am quietly excited and looking forward to the first transmission, which we hope will be in early October, on BBC 1.

I shall be doing a book signing tour here in October and hopefully visiting Australia and New Zealand in November and Holland in December. Travel begets travel, but at least I can leave my sleeping bag behind!

Soon we’ll be able to have more material about Himalaya on the site, and we’ll be keeping you updated about where and when you can catch the series. Meanwhile watch the old ones on UK TV Documentary channel!

Thank you for being patient during my absence. Talk soon, as they say.

Michael[/quote]

[img align=”centre”]/images/me-04-06-18.jpg[/img]

This is what happens when you tell a wizard his pointy hat looks gay.

It’s just under 2 weeks till i go to berlin with college, and i cant wait. There are times when i feel i just have to travel, anywhere. of course, watching michael palin DVDs only makes this feeling worse.

I love the feelling of waking up, at maybe 4 or 5 in the morning, and thinking “today, an adventure will begin. tonight i will sleep in a bed 1000 miles from here”. i adore the feelinng of actually moving: watching lanscape go by, perhaps changing gradually. i love new foods, new drink, new people. oh i just cannt wait!

In it’s brief evaluation of Fanfic, the bbc Ouch! website quotes professor Henry Jenkins as saying fan fiction is “born out of a mixture of fascination and frustration”, as the original material captures the imagination but fails to satisfy. Writers placing “marginalized peoples” at the centre of their stories, “play out a drama about acceptance, tolerance, even an embrace of their difference.”

In saying this, Jenkins has seemingly captured the raisin d’etre of Fanfic perfectly. It is a medium where fans can take the components of established, published works and examine them through their own writing. This essay will examine fan fiction as a mode, reflecting upon points for and against it.

Fanfic can be criticised on the basis that it is not original. It is an embellishment upon another artist’s work, and some hold that this makes it less artistically valid. Many philosophers hold that one of the main aspects of all art is originality: Bizet did not copy themes from Mozart, nor Tolkien from Tolstoy. Every art work should be utterly unique. It follows, then, that as pieces of fan fiction have as their basis other works, they are less valid.

Indeed, the ouch article points out, “[i][Fanfic exists][/i] in the grey areas of copyright”, meaning that it is not fully recognised under law. It can be seen as immoral in that writers steal ideas from others. This is certainly true, but writing, I would argue, has no formal rules on this subject: it, like all art forms, is forever evolving and changing in a way similar to genres.

Toderov proposed that genres are in a constant state of flux – elements of one genre move into another, then another. For example, in the Harry potter novels we see elements of fantasy, adventure, melodrama, and so on. Writing is similarly fluid: it comes off the page and forms a life in the readers mind. In this sense, it no longer belongs to the writer but is the reader’s property. By it’s very nature, writing invites interpretation by readers.

There are many ways this can be achieved. Usually, a person will read a book, think about its themes, perhaps incorporate them into his or her world view, then move on to another book. Yet if he or she has the power, money and inclination, a person might chose to make a film out of a book. This is similar to the generation of Fanfic, as a director will ultimately have to interpret the text to make the film. It is unlikely that the text’s original author and the director would have the same vision, so the film can be seen as merely taking the original as its basis.

This is exactly what Fanfic seeks to do. Another form of reflection upon an original texts, it gives the writer the ability to explore certain elements, characters and themes. They are indeed valid forms of writing in their own right, merely having used another piece of writing as a reference point, just as film adaptations ultimately do. They are thus paying tribute to the original text for being versatile enough to allow such exploration. To dismiss Fanfic as somehow less worthy than other art forms is therefore folly, and would, in my view, betray one as ignorant and snobbish.

Worth a look: http://www.fictionalley.org – “FanFic in All Shapes, Sizes & SHIPs!”

I should pooint outt that last night, having watched england lose sso dramatically at football, and having drank one too many beers [stella through a straw is damn daangerous] I made some quite xenophobic comments here. The french are nice people, who make good wine, and i just want to point out that what i said last night did not reflect my world view.

but they’re still lucky!

trafalgar meann anything? we beat hat little arse napolion. and you wwere somewhat quick to surrender to mr hitler, ehh? you got blloody lucky toniight!

We just got back from the cinema, where i saw the new harry potter film. i was glad to see that the film, like the books, are becoming more adult as they progress, and the prisoner of azkaban is thus a much more sophisticated film. This may, of course, have been connected with th change in drector – if ever one needed proofe of “auteur theory”, here it is.

indeed, the differences between chris columbus and Alfonso Cuaron are remarkable: Cuaron employs a far darker, more aatmospheric style; there is mmuch more emotion in the new film; the mise-en-scene is much more textured and is almost painterly – certain shots reminded me of the paintings of John Howe. compare for example the shots of hogwarts in the rain to very similar paintings of middle earth by howe and alan lee.

Thus this is a far more adul film – the ever-present quidditch scene is done in the rain. while alan rickmaans snape is as always broodingly excellent – i’m afraid la guerras unnatural liking for him seems to have rubbed off on me – the other characters, lupin and cirrius black are also highly impressive. They seem to have real emotion and depth. the acting, needless to say, has also improved, although there is hardly a scene without potter, granger and weasly in and i’m a little unsure about the new dumbledore.

while i still think that this series could do with a disabled charachteer, an that miss stanhope runs mr potter into the ground in terms of depth etc (see samples of my work), this is a vast improvement over the last two films, which look like kiddies cartoons in comparrison. I cant wait to see what Cuaron does with goblet of fire.

Contrary to my brother’s beliefs, the pikelet and outcake shop in Congleton can go on hoiliday:

[img align=”centre”]/images/shop-on-holiday.jpg[/img]

twilight is the period between the end of ones exams and results day. its a period when one is suddenly free from all work. theres little point to worrying about exam results. in short, twighlight is bliss, and i look forwward to it all year. I have no work, no revision to do; no exams to worry about; I can just sit and chill: maybe read a bit, maybe do some writing, maybe get out my python DVDs.

ahh…twighlight is good. and in 2 or 3 weeks, i’m off to berllin for 10 days, which is gonna rule!

my final exam of the year, AS history, was tjhis afternoon. think I did o.k. I’m just happy they’rre over, and I now have about 3 monthhs to chill. woohoo. expect lots more blog entries from me guys!

I stood under the branches of the tree which overhung the driveway, a soft wind rustling the leaves.

“Beautiful, isn’t it.” Dad smiled. I could tell he was impressed. He was looking at the bike, but his sight, I could tell, stretched back some 25 years, to his own youth.

“why don’t you start it up, so we can see how it sounds?”

my brother stepped forward with the key. He slotted it into the ignition just behind the two gauges. Almost immediately, like a newborn kitten the bike began to purr.

It generated a gentle put-putting sound which reminded me of old biplanes from the twenties. I suppose my brother can be compared to those first brave aeronaughts. I couldn’t help feeling jealous, and proud.

At length, after the two men had talked about it and eyed it like workmen preparing to build a wall, my brother lent forward and gently squeezed the throttle: the putput disappeared, and the kitten turned into a lion, proud as any in Africa. My father was in love/

Of course, my brother was under strict orders from my mother not to let dad get on the thing. She knew that dad would simply fall in love with the damn machine at first sight, and she was quite right. Mum had been totally against Luke buying what she saw as a toy in the first place.

“It’s dangerous.” She had said, probably half a thousand times. “if you killed yourself, I don’t know what I’d do.”

For my part, I had to agree. I hated the idea of my little brother hurting himself. Truth be told, I’m very fond of him. Yet before me sat this great half-ton lump of plastic and chrome which sang like Hendrix’s guitar, and all I felt was admiration.

Luke’s gone out riding, playing with his new toy. Which, I suppose, is part of the problem: mum still likes to think of him as her littlest son, still wrapped in a white blanket. Today I saw Luke, a man with a damned fine motorbike, ready to make his own way n the world.

this evening, mum cooked the most delicious meal. it had beenn a long afternoon, and i’d had onlyy some bread and pate for lunch. its just me and mum at home tonight – dads away on business, lukes at tesco – so i was just expecting mum to do something simlple, like beans on toast. on the contrary, she usedd the occasion to make a risotto with button mushrooms and a butter and white wine sauce. it was delicious. I had the remaining wine – a rioja, which, althouugh clearly intended for thee cooking pot, was nevertheless palateable – to drink, and we sat and ate and spoke as evening fell through the kkkichin window. It was quite heavenly, and i’ll go to bed happy.

ok, i know its a day in, but so far i’m really greattful 4 this half term. last week shattered me, but now i’m full of vim and vigour. wattched a bond and aa jackie chan film today, and mum got return of the king on dvd! feeling good! revisions going well too.

the debate on how the disabled are or should be referred to often comes up on the ouch messageboards. the debate interests me. just how should we be defined. of course, it depends in part on weather we are a specific sub-group – is there a “we”, or are the disabled merely a set of unrelated humanns with some physical quirks?

The answer, I think, lies domewhere in the middle. Essentially I am no more ‘related’ to another disabled person than I am to eminem – we have different views, diffrent likings and diffrent political stances – yet, o the other hand, all disabled people share certain things: the special school system, frustrations at restrictive beurocraccy, a hatred of steps (especially the blond welsh one).

therefore, given that we are indeed a social subgroup, how are we defined? people who wear black and llisten to thrash metal are usually called “goths”; people who wear socks outside their platic trousers and baseball caps are called “scallies”, although “2complete retards” seems more accurate; so what is the collective term for isabled people?

I often refer to myself as “cripple” or “spastic”: these are derogetory terms which, rather like the term “nigger” in americcan culture, we have claimed for ourselves. they are postmodern terms, used for ironic purposes. Yet were anyone to refer to me as a spastic – that is, anyone other than my close friends and family – I would find it extremely offensive, just as a black person would take offense were I to call him a nigger. Jackie chan illustrates this very point in “rush hour”.

We can therefore see how this debate is so diifficult. euphomisms like “the ddisabled” and “the physically challanged” smack of the medical model, which attempts to treat us like hospital patients; South Park clearly illustrated how “the crips” is already taken; “spastic” reminds me of the 1970s andd is too derogiterry.

Whatevver the word, there will be problems with it, so why dont we just call all bets off. shakespeare wrote “a rose by any other name would’st smell as sweet”, so does it matter wht we are called? I think not. we are disabled, and we are proud!

this week i had three long exams on wednesday, thursday and friday. the thing is, they were all supposed to take place on wednesday, but due to the extra time i get it was thoought that doing examms for 12 hours in one daay would be a breach of human rights. Thus i had 2b persona-non-grata for three days. I was begining to get interne withdraw;l sympoms. At least now i can rest for 2 or 3 days before pressing on with revision. yay!

In other news, my site is getting more and more hits. so welcome newcomers etc.

in other other news, bush iis gettingon my nerves.. I’ll write about him smetime soon, but now it’s tome for fiends. does chanel 4 show anything else?

cp (ceribral palsy) + md (muscular dustrophy) = mp, which explains why all politicians are weak in the hheaad.

ok, its crap, but it amused me. not veryy pc either.

last night was very cool indeed. as planned, I was picked up at 8, and was in crewe by half past, I was aken in by clive and KJ. Strange how people made a fuss of me – finding me a suitable chair [i.e one i could”t fall off], saying “hi” and glad you could come”. I decided I like being made a fuss of.

anyway, i was sitting in a very dark, smokey room with a screen covering the stage at one end, onto which were being projected music videos. I got chatting to KJ, hayley and a few of the guys. Clive bought me a stella, and I sddenly relaxed. I thought “this is cool”, and felt like I was just a normal person out with mates.

I fell into my old habit of watching people as the place filled up. I used to think goths and bikers were scary people, but tonight they seemed, well, normal, and slightly comic for all their talk of death and suicide. I would once have been petrified of setting foot into such a place, but with Clive and the guys about, it felt cool. couldn’t help wondering what all the beardy bikers thought of me, but i’m pretty certain they didn’t mind – one even commented on my h*a*s*h tee shirt.

After we had arrived, with me sipping the Stella through the straw somewhat too quickly, I suddenly heard the opening bars of one of my favourite songs – Basketcase on the big screen! From then on, I knew it was gonna be a cool night!

as 9 approached, Kyle and the guys went backstage. Suddenly, the projection-screen lifted, and the most almighty din ensued. Kyle was shouting into a microphone like something satanic, Mark and Lee were on guitar, Dar was on Keyboard and charles was on drums. it all could have been imposing, if it hadn’t occurred to me that these guys wouldn’t hurt a fly, and indeed a few hours ago had been helping around the student council. Lee often helps me with my coffee. my point is that, i think the goth people have a bad reputation which is unwarranted. appearances often deceive.

Well, theres not much more to tell, other than I bought the 2nd round, had a thoroughly enjoyable evening, and got home shortly before 11. I wonder when their next gig is.

Scapegoat’s site

tomorrow night, i’m going out with a few of the guys from college. theyre playing at the limelight in crewe.. clive, the head of the student council and top bloke, is gonna pick me up from home about 8. after all these years of sitting, getting bored at home, i finally have a social life!

its somewhat liffee affirming!

I am now officially booared. just spent 4/5 hours revising. dulll. so, if anyone wants to msn me randomly, feel free to do so.

I just have to blog this – i was eating lunch at college in a conservitarry-type area thing, and down thee college road comes a big black van with a red stripe which took me right back to the 80s watching the A team with my older bro.

do you have a problem? yes lunch isn’t here yet and no-one else can help. no, esters fetching it.

then you must call…THE A-TEAM. Err, no thanks mr. beraccus, me and my LSA can cope, now go play somewhere else.

I just went downstairs again, and stood by tthe back door. the air now seems clear and fresh. I seldom go in to the garden, or any province of my father much, and so I lack knowledge of it. What I said earlier here was thus unfounded – for the most part. looking from tthe back door into the garden, I remembered the times dad had taken me there, onto the lawn, into fresh air. anger vaniishes like dawn mists, and I thought of Heaney’s poem: [quote=”Seamus Heaney”]DIGGING

Between my finger and my thumb

The squat pen rests: snug as a gun.

Under my window, a clean rasping sound

When the spade sinks into gravelly ground:

My father, digging. I look down

Till his straining rump among the flowerbeds

Bends low, comes up twenty years away

Stooping in rhythm through potato drills

Where he was digging.

The coarse boot nestled on the lug, the shaft against the inside knee was levered firmly.

He rooted out tall tops, buried the bright edge deep

To scatter new potatoes that we picked

Loving their cool hardness in our hands.[/quote]

to a certain extent, the fate of people with disabilities is to bottle things up: to keep quiet about frustrations, to relax because you know that some people somewhere have things much worse. I can do this usually: the indignity of being fed, getting messy, being spoken down to. But tonight dad was bemoaning how i have it easy; how he suffered most after my birth; how cp ruined his life. well poor you, dad, sitting there with your steaming tea and fluid arms, heranging mum for not having dinner cooked after she’d done a days work; taking the piss out of my speach when you just cant be arsed to listen.

well, bite me! in this malfunctioning body a bad decision gave mme, I put up with about ten times the stresses you do. and at school i saw people with problems ten times greater than mine.

was reading ouch tonight. I found a link tlo the blog of a lad with cp. although he goes to a mainstream school, he faces many off thee problems i face, like exxam board stress, lack of a social life etc.

i feel less and less lonely these days. strange, really heres a link