Following on from my entry a few days ago about AAC, I’d like to direct you here today, to a brilliant little article by Sally-ann Garrett in the huffington Post. Garrett gives readers a glimpse of what a minefield the whole area can be in terms of securing funding, getting assessed and so on, as well as emphasising how vital it is to get those who need it the right equipment. While the huffington post isn’t mainstream in the strictest sense, it is very encouraging to see that more and more is being written about the subject.

I suspect most people would agree that spitting in public is a disgusting habit. Frankly I find it revolting, and I get slightly angry when people do it, as if it were a sign of manliness. I’m also utterly unconvinced that it is a necessity for people engaged in sport. As reported here, in what is thought to be the first UK case of its type to be successfully taken to court, two men have been fined £160 each for spitting in the street. The judge effectively classed spitting as a form of littering. I suppose that is to be welcomed, but one question occurs to me: what about we guys who dribble? Of course I’m sure most would say the difference is obvious, but when you think about it where do you draw the line. Many, albeit narrow-minded people, don’t understand how hard it is for us guys with cerebral palsy to control our drool, and object to it as they would those who spit. Might we therefore be open to persecution or prosecution because of this ruling? I admit the chances of such an absurdity happening are infinitesimally small, but I just have to raise a pessimistic eyebrow at he notion that it could now be possible.

I still feel rather shaken up about this, and it has affected me more than I thought it would. Lyn and I have a bit of a mouse problem in our kitchen, so we laid down traps. Mitchel got us a variety of traps, one of which was a sticky bit of card: when the rodent ran over it, he would get stuck. Yesterday morning, then, Marta inspected the trap, and found a small white mouse suck to it, alive and struggling to free itself. She called me into the kitchen, looking scared – she said she couldn’t handle it. We didn’t know what to do.

Even now I’m shaking as I type. I had no choice but to carry out what I now think was the most horrible, base and abhorrent thing I have ever had to do: taking the hammer Marta had handed to me, I bashed the poor little fuckers brains out and took the whole sticky mess to the outside bin. I felt utterly sick -for the first time I had directly ended a mammals life in a truly violent way. I know I had little choice, but I instantly felt deeply deeply ashamed, horrified to realise that it was so easy to end a life.

Swipe, Sky News’ cheap, tacky replica of Click on the beeb, has a short article about Lyn and her new instrument this week. To be fair, it’s quite good, and raises a few issues. for example, there is an ongoing debate in the disabled community over whether it is better to use standard, off-the-shelf equipment such as the ipad, or to ask for purpose built machines better tailored to their needs, like the lightwriter or dinovox. To be honest I haven’t decided where I stand on this debate; there is surely room for both solutions. What is clear though is the specialist equipment is usually far more expensive than the general-use stuff despite the latter often but not always being just as useful, but as the sky report shows, it need not be. Things like the Lynstrument cost very little: It doesn’t have to be fancy, it just needs to get the job done. Anyway, swipe can be seen here.

My apologies, but this Reuters article is just too ironic for me not to flag up. ”A Tunisian pilot who paused to pray instead of taking emergency measures before crash-landing his plane, killing 16 people, has been sentenced to 10 years in jail by an Italian court along with his co-pilot.” It is, of course, tragic, but could there ever be a more dramatic, brutal demonstration of the folly of religion?

It has been an awesome, awesome day, for a variety of reasons: I decided to zoom up to westminster, and was on the scene when all sorts of amusing shit hit the fan at the UKIP conference, although I didn’t see Godfrey bloom make his comments in person. It was quite a fascinating afternoon, actually,, just hanging about the conference centre talking to the candidates, although my opinion of them has not changed: I still think they’re xenophobic idiots, albeit marginally nicer xenophobic idiots.

Far more importantly, though, I have the pleasure of directing you here, to an article by Lyn in the famous huffington post about her instrument. Great stuff indeed if slightly basic. It really is exciting to see her grow and grow as a musician, and the Lynstrument is an exciting new branch of that growth.

I feel very positive indeed about yesterday. It turned out to be quite a hectic day: our original plans for the day were put on hold for reasons we need not go into, so I decided to zoom over to luke’s for the afternoon. The last few day’s I have visited, social activity got in the way of work (read: we just went to the pub), but yesterday we made some real progress on our film. Perhaps for the first time, the project felt like it was becoming a definite reality. Without wanting to go into too much detail, I had a flash of inspiration and made a suggestion which Sally called ‘genius’; it made the entire thing much more feasible. I now feel much, much happier, and truly eager to get down to work. I’m such a lucky git to have met those guys.

It has been a long, busy, great day. I can’t write much tonight, other than to welcome to the world James Nicholas Flackett, born today at 10:46 am, weighing 5 pounds 7, to my great university friend Chris and his wife Melissa. Mother and baby are both doing fine, and I couldn’t be more happy for them.

Your nose touches the glass screen; and then…

A type of magic – the very stuff of life, of dreams –

Flashes from the pad. Thus it seems

From your nose comes so much wonder, so much joy

And so much beauty.

—

Your nose touches the screen, and music comes

Wonderful song, unusual and electronic:

with a head-nod you summon into being sound and rhythm like no other. Like the choir of heaven creating the world You create sound – and life!

—

Your nose touches the screen, and pictures form vivid, unbelievable real faces emerge, from hours’ toil.

Stunning an viewer yet done for fun. Relaxation on a sunday night for you,

But to me, utterly remarkable.

—

Your nose touches the screen, and my love redoubles!

While I’m not sure about this story, as I suspect we aren’t being given the full picture, I think it is worth linking to anyway. It concerns a severely disabled young man who, even though he can neither walk, talk or care for himself, has had to undergo a work assessment and is now at risk of loosing his benefits. The problem, as far as I can gather, is a lack of coordination between authorities as he goes from child to adult services. Yet this is nevertheless more evidence of the pressure we disabled people now face; the government is trying to squeeze us however it can, so much so that work capability assessment firms don’t give a fuck about putting this man and his mum through this ridiculous process. It is quite wrong and very worrying.

I think I really need o direct you to this highly articulate, very well-informed young man. In this video he trounces UKIP, in an entertaining thorough way, but if you have time take a look at his other submissions – he seems to have a lot to say, and thusfar I agree with most of it.

Sometimes odd little pieces of ephemera catch my eye which demand to be noted – just tiny little details which catch my eye that I suddenly feel I need to record here. One such incident occurred today – well, more of a punctum in real time than an incident. Lyn and I were having lunch in the local cafe when a woman came in wearing a pink London 2012 hoodie. That in itself is nothing uncommon, but the I noticed it was, like her jeans, smeared with white paint; she had obviously been decorating in it. Something in that image pricked me. It was like a statement saying the olympics of last hear have become mundane, the praphinalia from it has now joined the rest of the clutter of the city, Londoners disavowing it of its original meaning and value and using it as they would anything else. Thus clothes from London 2012 have now become just work clothes, proving once again that there is no room for sentimentality in the maelstrom.

I received email conformation earlier today that my masters thesis has been printed, bound and submitted to the appropriate people, something which both excites me and fills me with dread. I have been working on it for six years: on the one hand, given that it was only supposed to take year I feel quite ashamed of that fact; after all, London planned and put on the olympics in less time. And yet, this is something I’ve worked very hard on for over half a decade, pouring my heart and soul into the longest piece of work I’ve ever created, apart from this blog. I am bloody proud of it. Yet now, I suppose, all I can do is wait, and hope the examiners pass it – the fear that they might not is pretty indescribable. I would like to thank Esther for her help on the early stages, and my parents for helping me get the document ready for submission.

It is the time of year when I wish my good old friend Charlotte a happy birthday. This time last year, of course, we all had the jubilation and merriment of the paralympic closing ceremony, but today, the rain starting to pour, I can’t help feeling a little low. Of course, Lyn and I have many cool things to look forward to; it is just the fact that it has been months since I saw my best friend from university. C has an infectious energy about her that just makes one want to party. From what I read, though, she is doing well: Charlotte’s singing group, The Harmonettes, looks like it’s getting ver popular, and sounds wonderful. Wherever charlie is tonight then, I hope she is having fun, enjoying her birthday and keeping out of the rain. See you soon, mate!

In terms of coolness rating, today was sub-zero. A few months ago, a Spanish film company asked lyn to help them create the score for their documentary, The Unstoppables. This she did, and they were very happy with her work. So much so, indeed, that they then decided to make a second, stand alone film about Lyn and her music making. Shooting began today, and although it’s only going to be a short film my eyes really have been opened to how intense the film-making process is. The crew of three were here for about seven or eight hours and worked constantly, setting up shots and shooting, and even so they need to come back and do more.They just filmed around the house, but even so I think we are both knackered. Nevertheless, I found it absolutely fascinating and can’t wait to do more. They were awesome guys to work with – professional, expert but fun. I’ll post a link to the complete film as soon as I can.

My love of film as an art form grows even deeper.

Sitting in the park yesterday, drinking too much beer,

Watching the Mighty 8 cricketers, giving them a cheer.

A great day for them, and quite a comfortable win

How we talked and chatted, many quaffing gin. Watching the wickets fall, there we all sat; for my support this year they gave me a hat!

A truly great afternoon, then, out in the park

And then a barbie at the club, as it grew dark.

‘Though I don’t play, it’s like I’m on the team.

Yes, they are now my friends these men, these cricketers of esteem.

I think I better just mention the rather cool inclusion of voca-using comedian Lee Ridley on this week’s edition of Click, the technology show on bbc news. They were doing a segment about the use of technology in comedy, so Ridley who uses a communication aid throughout his performance, was relevant. It is only a brief mention, but it occurs to me that we voca users are slowly becoming more and more visible in the media. I’m Spazticus on channel four is a great move forward in that area, as is, I think, the paraorcestra. At last it is not a rarity to see a crip on telly, and that must surely be a great thing. I daresay that the producers of Click might be interested in Lyn and her use of the ipad to create and perform music – reckon we should contact them?

How can I sum up the events of yesterday? The truth is, I don’t feel I’m qualified to give an overview of the politics behind it all, yet it is clear to me that we disabled people are being hit hard by the government cuts. Clear enough, indeed, that yesterday I felt compelled to join my comrades on a protest up in westminster. It turned out to be an incredible day: as usual I went not knowing what to expect; I met a group of my comrades up in whitehall, opposite Downing street, already getting warmed up. They were a diverse bunch, the disability community now accommodating a gloriously vast array of people. Many people, not just those with the usual physical disabilities, now define themselves as belonging to our community, and a great many of them are being hurt by the tory cuts.

A short while later, after a few protest songs had been sang, the protest moved from whitehall to the DWP office in order to convey our message to Ian DuncanSmith. There we met up with other sections of our protest party who had been campaigning in other areas, such as the department of education. That is when it became clear to me that this was no small affair – there must have been two hundred of us. It was then, too, that I heard of the plan to actually enter the palace of Westminster and deliver our concerns directly. I had thought I would be home by seven, but this was going to be a long day.

I never thought I would actually be allowed into westminster hall, yet yesterday afternoon, having spent what felt an age going through security, I found myself sat in the beautiful millenium-old building. It is a fascinating place, labyrinthine with an ancient feeling. Portraits of prime ministers adorn the walls: I couldn’t help thinking his was where great people like churchill once walked. Unfortunately the building only has two small lifts, so getting us all to our allocated room took a while, and even then we couldn’t all get in. Thus I missed most of what was said, and indeed who said it. Nevertheless I felt it necessary to be there, sat with my comrades in the halls of power.

At this point I feel I should launch into a rant, outlining how angry I feel at the injustice this government is causing. And I did feel angry sat there yesterday in the green-carpeted corridor. Yet it was not a day for ranting, just being there was sufficient, showing our opposition to the injustices currently being meated out. The bus ride home was long and slow, and I was feeling guilty about not being able to skype my parents at the arranged time, but it had been a thrilling, amazing day – one of the greatest. I went to bed last night feeling that maybe, just maybe, I ad helped make a difference.

It has been a long, amazing day. I feel like I should try to write about it – I went into a place I never thought I would wheel into (think big, millenium-old buildings in central London) . Yet sometimes it is best to sleep rather than write, so I’ll keep you in suspense: sorry, but this one will have to wait ’till the morning.

Believe it or not I still haven’t seen ‘Star Trek Into Darkness’. I must be the only self-confessed trekkie not to have done so. The truth is, it did not appeal to me; I did not feel as compelled to go see it in the cinema as I would if it were a trek film of the old sort. You see this new type of star trek – the sort begun with the 2009 reboot – does not feel like trek should; it feels completely different from the franchise I grew up with. However, I cannot, I suppose, close my mind to it; the 007 franchise constantly reinvents itself – that is, in fact – one of it’s defining features. That is why I bought ‘Into Darkness’ on dvd today. I’ll probably post a short review on here soon, but part of me still fears that the science fiction franchise I grew up loving is now gone forever, replaced by something with the same name but a totally different aesthetic and soul.

A day to chill

Being just tired, not Ill.

I rather overdid it last night,

Out in the garden, the moon so bright. A great night in with our mates talking and singing ’till quite late.

So while such evenings tire me out

They are surely what life’s about.

[img description=”undefined image” align=”centre”]/images/shadow.jpg[/img]

(Thanks to my polish pals John and Mitchel for sharing this with me.)

Yesterday turned out to be quite cool day. We decided to take a day-trip to Brighton. The sun was out, it’s fairly inexpensive, so why not? We caught the train down from London bridge and, meeting Mitchell and a couple of other friends at the station, we were soon at the coast. I do like Brighton: it reminds me of Blackpool, but seems slightly less commercial. I like the shops in the narrow, winding back streets. We found a martial arts shop which sold replica swords – I asked the proprietor if they sold bat’leths and, funnily enough, he said they did but had sold them. I promise you, I will own a Klingon ‘sword of honour’ one day.

My geekiness aside, we then went on through the fascinating, rather quaint streets. John was pushing me in my manual chair, and I was just musing to myself about something or other, when I suddenly heard a voice from the past. Out of the blue, Hollie, an old friend from university, called to me. It turns out she is now doing her Master’s in Brighton, and was out with a couple of friends. It was great to see her. I told her we were headed down to the beach and invited her along, and she said she might join us later. In the event she was too busy, which was fair enough – it was a happy encounter anyway.

The rest of the day was spent on the pier, drinking and talking happily. There were no Spaniards or digeridoos involved this time sadly, and we caught the last train home rather than sleeping on the beach. Nevertheless, it was an amazing day, ending at about three this morning in our kitchen. Lyn, Dominik, John and myself resolved that plenty more such trips, to Brighton and other places, are definitely now in order. I can’t wait – who knows who I’ll bump into.

Pretty soon I intend to try to write something about world events. It has been a while since I passed comment about such matter,, and it will feel good to look into affairs beyond my personal here and now again. For now though, I cannot decide how I feel about syria: going to war again would be unwise, of course – conflict and bloodshed must be avoided wherever possible – yet part of me worries that the UK has made itself irrelevant. By voting against involving ourselves, have we effectively bowed out of the world stage? Then again, you could say that we cannot keep blindly following the Americans into war after war, and this is what should have happened with iraq. Indeed, one senses the shadow of iraq bears down heavily. The problem is, in this case it is obvious people in syria are suffering, and need help. Thus I find myself in two minds, unsure what to think. Either way,, the vote has been cast, and all we in Britain can do now is watch.

Last night I stayed at Luke and his mum’s place again. We are fast becoming very good friends – just as well given we have embarked on such a large project together. Truth be told, I don’t have much to report, other than the fact I woke up with a head-ache, and that it is remarkable to see Luke, apparently inspired my me, becoming more and more independent. The thought I am helping him somehow is very gratifying indeed.

Today as disabled people and other minorities still face oppression of different sorts – albeit not quite as overtly as black people in america did half a century ago – it seems appropriate that I simply direct you to this speech, made fifty years ago today. Dr. King’s dream, it seems, is not yet quite for filled. Whether against segregation or against cuts, the fight for freedom continues.

The guys who created the Lynstrument visited again today. They are now making Lyn a new mouse, or rather a device to control the curser using buttons. What they did really was awesome: they are creating it for lyn specifically, so they spent a while working on getting the buttons positioned just right. However, they intend to use the same rough format for other people, so they were using a piece of card covered with velcrow strips onto which they could stick the buttons. They’ll now go away and make a permanent version, with the buttons positioned precisely where Lyn prefers them. Great stuff indeed, if only everything was so easy for disabled people: as we discussed in brief with the guys, we often have to pay relatively extortionate prices for specialist equipment we cannot live without – or are told we cannot – yet is often inferior to cheaper alternatives. It is a problem many of us face, and so I can’t help thinking we have been very lucky in this instance.

Nevertheless, I must say that being overcharged for such vital equipment has to be one of the worst things about being disabled, and is probably something that hold many of us back.

Tonight, I don’t have much to say It has been a slow, relaxed day a highlight was a shopping trip

A swift whizz round tesco, that was it.

Oh how I love this slow, relaxed life,

Which will be great to spend with my future wife.

Cyril and Saran’s wedding was wonderful. To tell the truth I don’t know where to begin writing about it: friday was a great day, one about friends and family, set in the wonderful grounds of Dissington hall, near Newcastle. Of course, it should be noted – and I include this mainly as a reminder to myself not to be so stupid next time – that we almost did not get there. We were at King’s Cross when I realised I had forgotten our train tickets! Dominik had to come all the way back to get them. Thanks to his swiftness, we only lost a couple of hours, but it was once we were on the train that I realised I had forgotten my suit! Fortunately a few messages to mum solved that problem, but I despair at my own ineptitude sometimes – how Lyn puts up with me I know not.

My antics aside, the ceremony itself was both beautiful and utterly unique. Cyril, being a bit of a joker, included a small stunt where, at the right point, one of his friends got up and pretended to object to the wedding; Cyril then gave him some money in the smooth, cool way my cousin has, and the guy sat back down. I loved it, although I must say that for a fleeting second I did not realise it was a joke, and was beginning to worry. And then there as the couples’ first dance. They had rehearsed a kind of performance for this too, reminiscent, dare I say it, of the tango performed in True Lies. Sexy and intimate, I found it astonishing, and was sad that Lyn was out of the room when they performed it. It was one of the coolest things ever: saran and Cyril certainly have style.

We all then danced the night away, talking and drinking the excellent wine my uncle had brought. I’m not sure when I got to bed, but it was a very cool evening – I might put some of the photos on here soon. We got back here last night rather tired, having explored some of Newcastle before coming home. I still feel rather bad about the ticket fiasco: I really must learn to be more organised. After all, seeing Cyril and Saran get married in such style has made me even more eager to start thinking about our own wedding, and from what I hear, they take a hell of a lot of organising.

We just got home from my cousin’s wedding in Newcastle. It has been an incredible couple of days, but a full account must wait until the morning, as I’m rather knackered. But I’ll just note that all my cousins and brothers are now married, leaving it up to me and Lyn to tie the knot now: that is an exciting idea, although, given my organisational skills, a daunting one too.

I just feel that I ought to flag this story up tonight. Two nine-year-old girls have become the world’s youngest formation wing-walkers in an effort to raise money and awareness for the Duchenne Children’s Trust, which raises money for research into the fatal genetic disease Duchenne Muscular Dystrophy. As someone who has lost several friends to DMD, I must say these young ladies have my full support and admiration, and indeed my thanks.

Tonight it suddenly feels like all is well with the world. My parents visited earlier, and we had a good, long chat: there are one or two family matters which, needless to say I’ll reveal here in due course, but which have me very excited. My thesis finally seems ready, and I have a new project with Luke and Sally to work on. Lyn has a new song out and a couple of concerts coming up, which is also very exciting. In short, and all other concerns political or international aside, it occurs to me that I have much to be happy about. Yes, things tonight seem to be looking up, and I’ll soon go to bed with a smile on my face.

Sorry to be slightly geeky, but this morning I came across this youtube channel devoted to reviews of James bond film and games. Its author, Calvin Dyson seems articulate, perceptive and rather witty; I seem to be able to detect a certain knowledge behind his comments that set him apart from the mass of other online amateur reviewers. In fact, what he says has elements of the cinephiliac discourse, but the way in which he plays with clips is reminiscent of fandom. In a way then he straddles the two discourses – demonstrating exactly what I write about in my master’s. I find it very interesting stuff, both as a cinephile and a bond fan. i have just watched a few of his videos so far – time to take a deeper look.

It has been quite a week. Last night was my cousin cyril’s stag bash: I went, John pushing me in my manual chair. That proved to be a wise decision, as, as usual, I drank too much too quickly. That aside, it was a really cool night – my brother luke came, as did three of Cyril’s friends from university. They are all neuroscientists apart from luke who is a bioinfomatician, so there were many amusing references to things like cutting into brains. We headed home about midnight part of me wanted to stay longer, but I was tired and more than a little drunk. It was great to see the guys, though I daresay that between last night ad the events of tuesday, I need a good rest!

[img description=”undefined image” align=”centre”]/images/putn tash.jpg[/img]

(Suits him, don’ you think?)

It has been a wonderful evening: just me, Lyn and the stars. We have just been sitting talking and listening to the radio. I don’t have much to report, nor is there much to describe; yet I feel I must just record this wonderful moment involving two people, in love, at peace, under the stars. Surely this must be what life is about.

I must say that I agree totally and wholeheartedly with this Guardian article: I’m spazticus has to be one of the funniest things on tv at the moment, and my full respect must go to channel four for airing it. And I’m not just saying that because I’m a disabled man…at least, I don’t think I am. I find myself wondering if I’m being objective, whether I unconsciously feel obliged to laugh given that it my own subculture which is at last on tv. I don’t think so: any way you look at it, there were moments of utter genius on last night’s programme. It laughs with us not at us. I especially liked the ‘money for a disabled person’ sketch, although I must say that I find the actor in it, simon Stevens, a bad choice for this programme. Stevens is something of an outsider in the disabled community; his views are seen by many as discriminatory and damaging. He has written (here for example) that he thinks that the disability movement has been hijacked by those he calls ‘fake disabled people’, those he sees as having less profound impairments. Thus I have real reservations about him being on this show, but that is just a minor qualm about an otherwise great programme. I’m spazticus smashes the taboo: it is at last okay to laugh at cripples.

I appear to have alas failed in my effort to post an entry a day for an entire year. Believe it or not, part of me feels rather upset about that – I was going to so much effort to keep it up. It was, however, for a good reason: sally invited me over to their place for a meeting about the project me,, Luke and she are doing after which we went to the pub. Their place is quite a distance, but straightforward enough to get to. I had thought I’d be back by the evening, but sally and luke are fast becoming good friends, so a bit of socialisation was in order after we had dealt with the business side of things. It turned out to be an incredible night – rather than come home, they let me stay the night at theirs. Awesomely, it was also the night that Luke, a comunication-aid user, ordered a round independently for the first time. Sally, Lukes mum, says I have inspired him to do more things on his own. How cool is that.

Thus this morning I woke up in a bed I didn’t recognise,, wondering why I couldn’t feel Lyn beside me. I decided to get back here quite promptly, but no doubt I’ll be going back to sally and lukes again soon. We have a project to work on which, while still embryonic, has a very good chance of becoming huge. I am very excited about both it and my new friends. If that means I don’t post an entry every day, then it seems worth it to me.

I realise my last few entries have been fairly short and sweet, and lacking in analysis (inasamuch as I ever really analyse anything on here). The thing is there doesn’t seem to be much going on that I feel compelled to write about in depth. Of course, my views on politics haven’t changed: I’m still as angry at the tories and their ideological cuts as I ever was. Yet I fear there are only so many rants I can post before it gets boring. Of course, that situation isn’t helped either by the act that it is summer and there is not much going on politically in general. Nor can I write much about events here in charlton: Lyn and are busy working on various projects. As I noted, Lyn just finished a great track and now intends to create a video for it; I have just begun an awesome new project which, while I don’t want to go into detail about it on here yet, I’m very excited about. Also it would now seem that my masters is ready for submission. All in all, then, these are exciting times: the problem is that I can’t seem to convey any of that excitement onto my blog, for the moment at least.

And I promise to post a proper rant on here as soon as I find something to get sufficiently agitated about.

My older brother, Mark, is 32 today. Happy birthday bro! For one reason or another, we rarely keep in contact – I know he’s in paris, but because we both lead such busy, hectic lives, I don’t talk to him very often. I still think of him, of course, wondering what he and Kat are up to. If only he had a blog too, allowing people to keep tabs on him as mine does with me. Nevertheless, if you’re reading this bro, have a great day, and I’ll see you soon.