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.

12 Responses to “ My multiple sclerosis and web accessibility ”

Comment by JackP

as I’ve given up smoking and taken up karate.

Presumably the theory being if someone attacks you, it’s quicker to hit them back than to breathe smoke over them repeatedly and wait for them to get lung cancer…?

Comment by Ben 'Cerbera' Millard

The use of title for human-unfriendly data is frowned upon by the WHATWG contributors I’ve seen comment on it (Henri Sivonen in particular).

Describing XML webpages as an “obsession” is funny because it’s true! :D

Btw, the phrase “rule of thumb” is said to come from how big a piece of wood you could beat your wife without without leaving a mark. Once I heard that explanation, it became a chilling phrase whenever I see it.

Comment by Richard Rutter

I was wondering how your MS manifests itself, Bruce? In my experience (my mum and some friends) MS seems to strike in random ways – reduced motor control, lethargy, eyesight, and so on. It’s kind of a private question so feel free to reply privately or not at all. Does it affect *your* ability to use the web?

Comment by Bruce

Yeah, sometimes it does Richard. For me, when I’m feeling bad, it’s visual difficulties (small fonts hurt my eye) and motor problems (clicking tiny links is hard—but I like to use the mouse rather than the keyboard).

Comment by Anne van Kesteren

FWIW, with HTML 5 you can unambigiously parse HTML as well. Unambigious parsing is not really an argument for creating something that bails at the first error. That might be/seem the easiest way to define a language though.

Comment by Julie Howell

Funny how things turn out.

Dear readers, Bruce and I both knew each other before we knew each other.

Bruce knew me because he’d used my website, the online community of people with MS that he mentions in his post here.

I knew Bruce as he failed to turn up for a meeting with me about six years ago. I hadn’t met him at that point and the meeting was about work stuff (Bruce was thinking about commissioning a book about web accessibility at the time and I guess he’d heard I knew something about it). Bruce’s colleagues apologised to me for his absence, and one made a passing comment; the sort of comment that never passes me by. ‘He’s not well today’.

The ‘frequently asked question’ popped into my mind. ‘I wonder if Bruce has MS?’ The rest is history.

This year is the 16th anniversary of my MS diagnosis.

A lot of water has passed under the bridge in that time. If having MS (I was 19 when it started) has taught me anything, it’s to be pretty damned appreciative of the fantastic people in my life and all of the great things that I’ve seen and done.

Don’t get me wrong. MS is sh*t. But people with MS aren’t. I probably wouldn’t have got to know Bruce as well as I have had it not been for MS. I can’t regret that.

Happy Sad Anniversary, Bruce. Keep doing what you’re doing for all the myriad reasons. The world’s understanding of MS is better as a result of it and every person with MS yet to be diagnosed (and there will be many) will get an easier, better time of it pre and post diagnosis because you share what you experienced.

It may be small consolation to you, but to the tens, hundreds and thousands of people brand-newly diagnosed with MS, who will Google it and find you here it… well, it’ll give them permission to think things just might be OK. That’s a huge gift to the world. Innit.

Keep on keepin’ on. x

Comment by John Dunagan

I learned about MS when I met Bruce, too, although not directly from him.

It was when Jeffrey Zeldman and Dori Smith started yelling at each other on stage at Web Design World about 8 billion years ago, because Zeldman.com wasn’t completely accessible to Dori.

Dori, who finally shouted out, “I HAVE MS!”, was of course, objecting. Zeldman was protesting that it was his personal site, and that it didn’t need to be totally accessible as his personal expression.

(And then I got glared at for being the next guy on line for the mic, and I hadn’t even started the fight! Can’t we all just get along?)

Anyway, there’s so much I don’t know about that disease, but some people I highly respect have endured it. This man is one of them, and my best wishes go out to him.

Cheers, Bruce. I appreciate who you are, and what you do.

Comment by Bruce

Thanks man.

I was there at that conference – it was Web Design World 02 in Seattle, where we met Danii and the other guys.

It wasn’t Dori Smith – it was Shawn Lawton Henry, now of the w3c.

Comment by John Dunagan

Yeah, your memory gets spotty when you’re my age. :)

Of course you were there. That’s where we met.

But now I remember – I ate with Dori. Watched Shawn argue. Zeldman glared at me on the ensuing smoke break.

Good times!

Comment by ravi

hi bruce and others,
I am a student doin a project for finding solutions for providing existing information regarding the impact of cognitive issues of MS for people with MS who are living in remote areas. I was thinkin that the internet was one of the effective ways to get around. can u suggest the probable barriers(problems with double vision,lack of energy levels while operating the system or others) that u have come across personally while using the internet to access information regarding MS. what are the other modes of communication do you think through which information can be provided in a useful manner? your response would be much appreciated.
cheers
ravi

Comment by Gill

Well a few months late but as you saw in my BADD blog, I’ve joined the ranks of the “not well todays”. Like you, I appear to be relapsing-remitting and like you, I’m getting on with it.

At least I don’t get asked if my interest in Accessibility is because of my MS. I have a documented history of pulling people up on poorly developed sites that goes way back before my diagnosis.

Keep up the fight. Next time I see you at one of the events, we can compare lesions ;-)