Archive for the 'Multiple Sclerosis' Category

My multiple sclerosis and web accessibility

With all the excitement this week of my wife and kids going on holiday, and my crazy bachelor life installing Ubuntu and upgrading WordPress (don’t tell my wife, will you?) I completely forgot to mark an anniversary—it’s eight years since I was diagnosed with MS.

I’m pleased to say I’m still well. In fact, I’m better than I was three years ago when I bid my MS a happy fifth birthday, as I’ve given up smoking and taken up karate.

One thing that has changed in three years is that I do more speaking at conferences about accessibility, and I tend to mention the fact that I have a disability. It’s not because I’m trying to claim any moral authority (after all, I have a disability but I’m not disabled) but because I’m declaring a personal interest.

Recently, I was asked whether my interest in web accessibility is solely due to my MS. After a good hard think, I declare my answer to be no.

My first encounters with the web were in 1999 when my wife was pregnant and I could get no English-language information out in Thailand, so went to the Web. When I was diagnosed as having MS, my doctors gave me a photocopy from an English medical book talking in doctorese about how to recognise MS from autopsy photographs of brains. Not that useful, and not exactly encouraging, so I remembered my happy experience with pregnancy sites and turned to the Web again for information, and found it via Jooly’s Joint—a large community of people, many far less mobile or dextrous than myself, working together and supporting each other. And just, well, getting on with life. So I decided to stop feeling sorry for myself and get on with it, too.

Community and communication are the things that I love about the web. For example, in Iran, mad theocratic regimes try to ban free expression, but there are Iranian blogs everywhere, with people telling their truths to anyone who’ll listen. Online communities gather around music, sports, eBay crap, politics, even web standards. The driver for this was the simplicity of html, and the forgiving nature of browsers, that made “making a website” a reasonably easy task.

Preserving the low barrier to entry is why I find the obsession with serving webpages as XML to be foolish. What’s the point of a site that breaks completely if there’s an unencoded ampersand? Sure, data for banks, finances, payrolls needs to be unambiguously parsable well-formed XML, but Web content needs more forgiving consumption, because Web content isn’t merely data—it’s communication. Imagine refusing to take your fingers out of your ears until your foreign friend speaks perfectly grammatically correct English.

I’ve given the HTML 5 crew a hard time, and some of their participants seem shamefully dismissive of people with disabilities, but their belief in “fault-tolerant” browsers and markup, and their wish to make the core elements of the language as accessible as possible are entirely in keeping with my views on the absolute necessity of making web content easy to write.

That low barrier to entry for writing web content needs a parallel low barrier to entry for accessing that information. The web is such an exciting medium because it’s the easiest to access for people with disabilities if you code it correctly, and for the most part, coding it properly is not hard. Headings, sensible link text, alt text sorts out most problems.

I passionately believe that communication should be easy, and I’ve an opportunity to influence the development of the web by evangelising to organisations, individuals, producing books, articles and participating in mailing lists and forums.

One reason that I mark the anniversary of my diagnosis is that there’s a rule of thumb that says your condition ten to fifteen years after diagnosis is a rough indicator of your long-term prospects. There’s no guarantee, of course: in five years time I could be in a wheelchair or unable to speak.

Even if that does happen, I’ll still want to read the news, chat with friends, buy music and generally surf the web, and I’ll be on your case if your websites are inaccessible to me.

It’s true that my own circumstance makes my evangelism more urgent, and (perhaps) more heartfelt. But it doesn’t mean that if you’ve got no disability, you shouldn’t care. You should.

Orange belts

It took us 10 months to train for this, twice a week, but both Marina and I passed our orange belt Karate/ Kickboxing gradings with a grade B. Not bad for a fat old fart with multiple sclerosis, even if I say so myself.

Here we are, very sweaty and dishevelled, after sparring. Warner and Sean comprehensively kicked my arse.

Woe betide anyone who disagrees with me now about the accessibility of microformats or PDF!

40 year old man, 8 year old girl, with boxing gloves and helmets next to punch bag

See me …. then see Me

Regular readers will know that when I go out, it’s either with middle-aged punk rockers or web standards wierdos, so when I received an invite to a posh art gallery for a private viewing of a new collection by Melissa Mailer-Yates, I was excited to see how the beautiful people live, with their wine and canapés rather than Stella and crisps. I took my daughter Marina with me, to distract people’s attention from my scuzziness.

The exhibition includes nudes of women with multiple sclerosis, and one of the models is my old mate Julie Howell. It’s an odd feeling, looking at a painting of a mate’s nether regions and trying to say sensible things, so I failed dismally and told Julie that she has a nice arse. Oops.

The paintings are quite attractive, although with some of them, I didn’t really understand what they were “trying to say”. There was also the irony that the gallery had hung some on a small mezzanine floor, accessed via a narrow spiral staircase and therefore completely inaccessible to one of the models who was in a wheelchair.

8 year old Marina and Julie Howell

Anyway, if you get the chance, go see the exhibition. It’s raising money for the MS Society.

Wanted: people with Multiple Sclerosis for website testing

If you are recently diagnosed with MS, and would like to help the MS Trust user-test their website, Simon Webster wants to talk to you.

We are looking for people who have been diagnosed with MS for no more than five years who are willing to travel to Birmingham to ‘test drive’ the site.

Sessions, which should take about an hour, will take place at Evidence Base’s lab in Birmingham on 25 and 26 January.

Travel expenses will be paid plus £20 for each participant. (More)

Curse This Nice Weather ..

Serves me right for posting how my MS doesn’t affect me too badly. Now the weather’s turned warm and humid, I feel as limp and useless as the Pope’s dick.
Last year was worse, but I was working from home, so wore shorts and had an industrial-strength fan aimed at me; my new company’s office allows no air circulation at all without clambouring, like spiderman in a business suit, onto desks and opening two windows. And, think of my dignity, dahhhling…

Of course, should the weather cool down, I will still complain. I am British, after all.

Happy fifth Birthday to my Multiple Sclerosis

It was five years ago today that Dr Naraporn Prayoonwiwat of the Bangkok Nursing Home diagnosed me as having Multiple Sclerosis. After a short-lived period of semi-paralysis of my left leg and arm in 1995 which seriously impaired my enjoyment of a gig by The Stranglers, and a bout of optic neuritis in 1996 that was cured by steroid tablets and two anti-inflammatory injections into my eye (the second most hideous medical procedure ever inflicted on me), it took a period of spazziness and trembling of my left arm in 1999 to bring me to Dr Naraporn’s clinic. I was very lucky, because although MS is highly unusual in Asian people, Dr Naraporn had worked in the west and knew MS when she saw it.

As quick as you can say "Yes, I have medical insurance", I was in a private room with 1000 mg of methyl prednisolone dripping into my left arm, and undergoing a lumbar puncture. This is the most hideous of medical procedures; you curl tightly into a foetal ball while a hypodermic that makes a knitting needle look like a flu jab is shoved between your spinal discs and cerebrospinal fluid is withdrawn. Should this ever happen to you, here’s my advice: drink gallons of coffee as caffeine prevents the LP migraine, demand pre-skewering valium, and don’t move a fucking muscle for the 20 minutes that the needle’s in there.

The next day got me an MRI scan (the third most hideous … you get the picture) and a formal diagnosis of Multiple Sclerosis. I was given some prednisolone steroid tablets to shut down my immune system so that my nerves might be given a chance to repair themselves, something else to counteract the acne that the steroids cause, Triludan to stop the neural pain and something to counteract the abdominal spasms that the Triludan cause.

Then, it was to internet cafés for hours to google for English language information. It was Jooly’s Joint that I found, and that helped me a lot (so it’s especially pleasant that a few years later I met Jooly in connection with Web Accessibility without even realising it was the same Julie Howell). Also, my colleagues at Bell Thailand made it bearable by covering my lessons and being lovely to me.

Five years later, I’m still well – I get tired quicker than I did 5 years ago, but then, who doesn’t with two young kids and a rock-star lifestyle? I still work, drive, drink, and smoke, although seldom simultaneously these days. My comparative wellness is not a sentimental story of my Herculean willpower triumphing over adversity or any bollocks like that, but purely the physical lottery of the disease. I’m simply lucky to have only 2 lesions, in the top of the spine and none in the brain. The only things I don’t do any more are womanise (and that’s nothing to do with MS, that’s because I’m terrified of my wife) and play guitar, as the last MS flare-up damaged fine motor control in my left hand. Some people who’ve heard my songs might consider the guitar-curtailment a blessing, however.

For me, to be honest, the worst thing about MS is the uncertaintly. Prognosis can only ever be statistical, rather than individual; I may never have another relapse again – or I may wake up tomorrow and find myself permanently in a wheelchair or blind in one eye. It’s purely a percentage game. It makes getting a simple cold a nightmare – could this be the time when my immune system, awakened by the bug, starts again at destroying my own spinal cord?

If you’re unlucky enough to have been diagnosed as an MSer recently, don’t despair; don’t deny it and wear yourself out, but don’t let it limit you – or even worse, define you. Here endeth the feelgoodbullshit psychobabble: Happy Birthday, incurable degenerative spinal disease – you bastard!