One in five (21%) British adults surveyed think disabled people need to accept they can’t have the same opportunities in life
one in four (26%) Britons think bars and nightclubs are not places for people with wheelchairs
42% of people with MS admit to being concerned about telling their employer about their condition in the current economic climate
Over half (56%) of people with MS find it harder to socialise since their diagnosis, with around two-thirds (67%) saying their MS has hampered their ability to enjoy everyday social activities like drinking, eating out or shopping
The report concludes
MS is unpredictable and, perhaps largely because of this, widely misunderstood. It is different for everyone, and everyone responds to it differently.
But what most with MS have in common is a desire to live as full and active a life as possible before the condition strips more and more choices away from them.
I’m lucky; I travel a lot, do karate, and live a normal life. There’s a lot of ignorance about what MS is. The problem is that it’s different for every person. I was diagnosed in 1999 after I lost my vision in my left eye and the use of my left leg and arm. This is why my dancing is so crap.
Nowadays symptoms are
Tiredness. That’s why, if you invite me to speak and ask me to take a long haul Economy flight, I’ll need 2 nights e.g. a full day before the gig to recover
Clumsiness when tired, and slipping over on Oslo pavements in winter
Dry mouth and swallowing difficulties, which is why I drink gallons of water at conferences and then have to rush to the loo. (Apologies if I rush past you if you’re waiting to ask a question – I’m not being a diva, just seeking a pissoir)
Trigeminal neuralgia, random sensations like electric shocks, when touched unexpectedly, particularly on the face
It was my privilege to present at Dibi Conference in Gateshead this week, where I performed as the Web Devil against Chris Mills’ Web Angel. This photo by @fuselagetown shows that I looked menacing and rather dashing:
This was the second time I’ve dressed as the devil. The first time was as a young man, and I used to do volunteer work at my local theatre.
In order to raise money, we would offer a singing telegram service by volunteering our time for free and using the theatre’s extensive costume store.
That’s how I found myself in a car, fully-costumed as Satan with red makeup on my face and a false goatee beard, driving to a pub in the Worcestershire countryside to sing Happy Birthday to a woman in a pub.
I stopped to ask a somewhat puzzled local where the pub was – a mile down there, on the right – and raced into the pub, desperate for a pee.
As I was wrestling with my costume (you try standing at a urinal in a one-piece jumpsuit with a zip up the front) the man at the next pot asked me, “Are you with the church?”. Of course I am, I replied, to help his joke along. “By the way, it’s that door across the corridor” he told me.
Naturally assuming he was part of the party who had booked a singing devil for their friend Lisa’s birthday, I flung open the door, roared and waved my pitchfork – to find about 20 vicars in dog collars sitting behind remains of a meal and listening to a speech by one of their number, with facial expressions ranging from amused, to shocked, to angry.
I was unsure quite what had happened – but it was evident that the room was Lisa-less, so I apologised repeatedly and obsequiously and backed out of the room with considerably less gusto that I had entered it.
In the public bar, the barman (who was the helpful man in the toilet) told me that the pub I was supposed to be at was a quarter of a mile further down the road. I quickly got back in the car and completed my journey.
An early 90s live (and unusually mellow) version of a song I wrote about someone who wasn’t called Jacqueline. In fact, while writing the song its working title was “Marigold Says” until I settled on “Jacqueline” because (a) it scans and (b) the only Jacqueline I knew was Jackie Foster at school, and I quite fancied her. (“Caroline” was another possibility, as it also scanned and I fancied Caroline Fowles, but that bastard Lou Reed had already recorded “Caroline Says”.)
Jaqueline wants, so Jacqueline gets.
How long she’ll keep it for is anyone’s guess.
Mary gets drunk, Mary gets to her knees
She never wants the things that you know she needs.
I am sick and tired of you coming round
And falling down and going home.
I’m sick of getting no response.
Won’t you tell me what Jacqueline wants.
Mary should know but it’s been a long time
And you soon forget those once-intimate signs.
Jacqueline wrote, and Jacqueline said
“I drown as the world comes round and fucks up my head”.
She said “You are you and I am me;
what other way could it be?”
I might have thought differently once”
Won’t you tell me what Jacqueline wants.
I recall the boys in the band taking the piss out of me for “going all prog rock” on account of a D diminished chord in the chorus.
Here’s the normal, rawer (and worse recorded) rehearsal version.
Brand-new presentations to be written in web technologies, eg with Vadim’s cross-browser Shower
Become a better scripter
After last year’s heroic lost cause of attempting to prevent people using the term “HTML5″ for everything, this year I shall be putting my finger in the dyke of everyone shouting for joy when a vendor uses first-mover advantage or market dominance to attempt vendor lockin
Learn to love Git. This one may prove tricky.
Personal
Diet – lose 10 kilos. This is closely related to…
Get my next karate belt, and train at least once a week.
Read more classic literature (I have 200 unread books on my shelves)
Take a photo every day
Play rhythm guitar in a band
Learn to play the bass guitar part to The Beatles “Rain” as well as this bloke does.
Regular readers will be familiar with my unique blend of misanthropy and parsimony, and will no doubt blame that for the fact that no festive card from me has dropped through their letterbox, especially if you’ve sent me one (thank you for that).
But they’d be wrong. It just seems to me a little wasteful to transport bits of paper to faraway towns or distant countries (half of our family is overseas) just to send you pre-printed religiously-based greetings which then go in a landfill.
So I don’t send cards. Instead, I donate what I’d usually spend on paper and postage to a charidee where it does good instead of polluting the place.
So, your Xmas card this year is a small part of a donation to Medecins Sans Frontieres which is “an international, independent, medical humanitarian organisation that delivers emergency aid to people affected by armed conflict, epidemics, healthcare exclusion and natural or man-made disasters.”
I hope that’s OK with you. And, even if it isn’t (you miserable sod), I hope you and those you care about enjoy your holidays and have a happy, healthy and peaceful 2012.
For Father’s Day, my daughter painted a picture of me riding a unicorn, with Turkish dancing girl attendant. I’m killing two goose-stepping Nazis with a “lazor gun” below a caption reading “with the power of HTML5″.
It’s going on the door of my newly-decorated office.
My second SxSW is over, and all I have are some photos, fewer memories than I have photos, and an aircon throat.
I have mixed feeling about South By Southwest. There’s the torrent of emails they send you for months leading up to the event, requiring you to register to their different systems. Once there, I get little time to meet new people and little time to spend with old friends because the conference is too big.
I get pretty nervy for my talk, which this year went well (slides). I usually include a lot of humour but our American friends have a very different sense of humour than Brits, so I play safe and also add liberal quantities of what I call useful information, as SxSW has more than its fair share of circle-jerking panels heavy in “inspiration” but devoid of content. The trick seems to have paid off; I had a full house in Ballroom C and a hundred people lined up outside in case other people left.
The best thing about SxSW is meeting our users. Our PR folks kitted us out with a huge giant rotating Opera O, so it was easy to find our booth and, once there, developers and consumers asked us everything from how to edit a speed dial on a BlackBerry to how to do remote debugging with Opera Dragonfly, We had comfy chairs at the booth, too, leading to a steady stream of visitors from Our New Best Friends, such as chums from Adobe, Microsoft and Google.
I met a penguin
two Slappas (for those who don’t know, a Slapper is a woman of easy virtue, so making two booth babes wander around with t-shirts marked “Slappa” is unfortunate)
Down at my Dad’s house, I found some old cassettes of demos I made in the early 90s. So bad luck, blog watchers; expect to find the tech content of this blog spoiled with hissy wow-and-fluttery vanity posts.
Anyway, here’s one of the favourite songs I wrote during that period. I was obsessed with TS Eliot’s poem Marina, a monologue inspired by Shakespeare’s Pericles. So I ripped that off, nicked a line or two from The Waste Land, pinched a bit of Shakespeare’s The Tempest and, while the literary store detective was looking the other way, ran off with a bit of Dylan Thomas too.
It’s a 4-track demo, hastily recorded in order to test out the harmonies swirling in my head, and the cassette suffers from being in a cupboard for 20 years, but maybe you’ll like it.
Aquamarine –
I’m a ship becalmed after stormy seas.
You’ve been silver and green;
I love you best now for your clarity.
You sing to me in sharpened keys.
You bring me emeralds and harmonies.
I will be here for you if you’ll be here for me
Sometimes, the tide turns
and everything becomes monochrome.
Aquamarine –
Your wet hair dries in the warm sea breeze.
Lie still and dream
Of the mountains – there you feel free.
Sail across still memories
Under sleep where all the waters meet.
Aquamarine -
This music crept upon the water to me
I’m a machine
Powered by your electricity.
You ebb and flow with melody;
You bring me emeralds and energy.
What seas, what shores,
what great rocks?
Sieze what’s yours;
What grey rocks?
What islands? What water laps at the bow?
The sea’s daughter, you ebb and you flow;
The sea’s daughter, in emerald green;
The sea’s daughter, my Aquamarine.
Lie still, be calm, and dream.
O my daughter.
A decade later, my wife had a dream of a baby girl swimming to her through water so took a pregnancy testing kit the same day. 8 months later, our daughter was born. We named her Marina.
I’ve had a the first HTML5 book published with my marvellous co-author, Remy Sharp, which is now in its third printing. Other personal highlights include an invitation from Martin Kliehm to speak with him at South By South West; our panel was voted joint third best of the whole conference.
I’ve travelled to Sweden, Poland, Japan and Australia and met many fabulous people. Special shout outs go to my fellow HTML5 Doctor Oli Studholme, whom I met for the first time last month and who shares the mantle of Nicest Guy On The Planet with Roger Hudson, who organised and guided Steve Faulkner and me for our Australian tour, and who has a fascinating store of traveller’s tales from his days in the movies; he was a scriptwriter for the legendary Aussie soap The Young Doctors (here’s a photo of one his original scripts) and now works in accessibility. From screenwriters to screenreaders; what a career trajectory!
Personally I’ll be glad to see the end of 2010. My Dad had heart surgery. I got sick. My two much-loved grandmothers died; they were both very old, and died without pain and without lingering which is the way to do it, but it’s odd not buying those Xmas presents this year. Tragically, a friend’s baby daughter died.
Festive charidee
Regular readers might recall that I don’t send Christmas cards: polluting the planet to transport someone else’s pre-prepared greetings to be stuffed in a landfill seems like a bad way to spend my money, so I give donation to a charity instead. This year, that charity is Amnesty International because we need freedom of conscience, freedom of thought and freedom from cruelty.
In the UK our government wishes to censor the Internet. In France, the home of chic, they have laws telling women what they can wear and, flushed with the success of that, the government has taken to rounding up members of an ethnic group for resettlement in the East.
Meanwhile, the junta that illegally controls Burma had a pretend election that – surprise! – they won again. Liu Xiaobo, the Nobel Peace Prize winner, languishes in a Chinese jail as a political prisoner. Mad people in the USA are calling for the extra-judicial murder of Julian Assange over Wikileaks. Iran, jealous over the publicity that Sudan got for its superb theocratic misogyny video, sentenced Sakineh Mohammadi Ashtiani to death by stoning although she was acquitted of any crimes. In Malawi, Tiwonge Chimbalanga and Steven Monjeza were sentence to 14 years in prison for being gay and showing no remorse about it.
So instead of sending a card to you, I’m sending some cash to Amnesty; please consider doing the same for me.
My global tour continues, and I’ve moved from Tokyo to Australia, where I’m touring Sydney, Canberra, Melbourne, Perth and Brisbane with organiser and all-round-great-bloke Roger Hudson and The Mighty Steve Faulkner, for the Web Industry Professionals Association. We’re talking HTML5 and WAI-ARIA. (So far, there are a few places left for Perth and Brisbane: book here.)
I’m very much enjoying Aus. It feels like England done right: good weather, laid-back attitude and fabulous hot-pants (not me, obviously). The only downside is the vast pantheon of comically venomous creatures that lurk round every corner. In Canberra I was even warned about evil swooping magpies.
The tour so far has been great; sell-out crowds and really, really clued-up (“cluey”) attendees and great people like Russ Weakley, Ruth Ellison who I’ve long admired but never met.
The flight from Canberra to Melbourne yesterday was somewhat fraught; we took off two hours late due to what was variously reported as “mechanical trouble”, “bad weather in Melbourne” and “a catering mishap that was particularly unpleasant”. (At least it wasn’t exploding engines.) On arrival the doors wouldn’t open and the fuselage rocked as the ground staff attempted to bash the doors open with the airbridge. We arrived at the venue with only minutes to spare.
Now I’m having a weekend (shifted forward by a day as I fly to Perth on Sunday morning) in Melbourne with my old and dear friend Pippa. We’ve already seen a park full of flying foxes and are off to see Kangawallabats at the zoo tomorrow. Tonight I’m cooking us pork stirfry noodles and gyoza and there is a case of beer to drink.
