The Funny Side of Disability

Fortunately (or unfortunately, depending on your point of view), my life is about as ordinary as most "normal" peoples' lives. Aside from having a few more doors held open for me - which is most appreciated, by the way - I'm glad to report that people in general treat me like a regular citizen of the world.

However, I can think of a few anecdotes to regale you with - experiences that went beyond the usual handshake and pat on the back I get from strangers. There was that guy by the Duomo in Florence, for instance, who genuflected when he saw me. Then there was the young drunk man I met in Bournemouth over ten years ago (drunk or high people react very amusingly around me - perhaps they think I'm a figment of their hallucinations) who performed a cross between a high-five and a hand shake on me, without saying anything at all.

It's enough to make you feel famous.

For me, the world is teeming with half-strangers. I'm sure you know what it's like to run into one of your old teachers and have them remember (as only teachers seem to do) exactly what your name is and the names of your brothers and sisters whom he or she also taught. If you happen to have no legs, though, the effect is doubled. Everyone seems to remember you. Even the old guy down the road whom your mother chatted to while you sat in your pram. Random people wave at me all the time with expressions of genuine recognition on their faces. I wave back, of course, out of politeness, feeling bad that I don't remember them.

More recently, I was in central London waiting for my brothers and mum to come out of a Mcdonalds when I became aware of a female traffic warden coming towards me. At first, I thought she was just going to walk past, but then she stopped right in front of me and said: "Good morning. If I offered you something, would you accept it?" I asked what it was and she said, "Some money - ten pounds..." "No, no thank you, I'm not homeless - my family are just in Mcdonalds there".

When I'm out and notice someone giving me a sympathetic look, I have this habit of looking at my reasonably pricey wristwatch so they don't think me homeless, so I did that on this occasion.

"If I don't give it to you," she continued, "I'll have to give it to someone else." "No, but thanks very much."

To which she pulled out a white envelope, placed it in my hand and walked off without saying another word. I watched her disappear down a side road, still not quite believing what had happened. I mean, a generous traffic warden - what are the chances of that? Where had this angel been when I received a parking ticket for being in a disabled space but with my blue badge facing the wrong way? I really could have used her then.

Sure enough, in the envelope was a crumpled ten pound note. I told my family about it and we had a good laugh over our calorie-packed breakfast. Traffic warden jokes never get old.

I still have that tenner. Maybe I'll frame it some day. Would she have given it to someone else? Probably. She seemed a lovely lady and I'd have much preferred a friendly chat to charity - one human being to another. Charity seems to be the default response to disabled people, which isn't necessarily a bad thing. After all, many of 'us' need help in life, and I'm certainly no exception to that rule. I just wasn't on this occasion.

That's got to be my weirdest experience of being in a wheelchair. If you're out there, traffic warden lady, thanks so much for the cash, but next time please just come up and say hello. There are plenty of homeless people in London to give your money to.

Tony Nicklinson: A Woolfian Argument

The big news story today is that of Tony Nicklinson's victory in getting his right-to-die case heard at the High Court.

For those of you who haven't yet read about Mr Nicklinson, he is a 58-year-old gentleman who suffers from Locked-in Syndrome, a condition whereby, due to a stroke, one is left physically paralysed but mentally intact. For the film lovers among you, it's a condition that was very poignantly portrayed in The Diving Bell and the Butterfly, starring Mathieu Amalric.

I have read about Mr Nicklinson today for the first time and even heard him 'speak' on BBC Radio 5 - very powerful stuff. His plight once again raises the controversial debate over what constitutes murder and what is a merciful, dignified death in twenty-first century Britain.

As it happens, my partner is a rehabilitation nurse who cares for a remarkable man who also suffers from Locked-in Syndrome. He has been making excellent progress since she first met him, but there will always be a limit to how much he and other sufferers will ever improve.

Like Tony Nicklinson, the only person who truly knows his quality of life is him.

It all comes down to quality of life and self-determination. Taking the first one, I am a 'disabled' person who happens to enjoy a very high quality of life, but that might be because I've never known anything different. People say to me all the time what a shame it is that I was born without legs, but I always tell them to save their pity for someone paralysed in a wheelchair. There was a young rugby player about ten years ago, I recall, who was paralysed below the waist by a bad tackle. Shortly afterwards, he went to Dignitas in Switzerland to die... Now, I believe that he had much to live for, with full use of his upper body, but that's just me. I can't even begin to imagine the shock of being an athletic young man one minute and someone who is confined to a wheelchair the next, so I can't and won't judge him.

Sometimes being 'disabled' is difficult to live with. Across the huge spectrum of disability, from blindness, to Locked-in Syndrome, what's lost is far more than just a physical or mental function: the constant need for assistance means one loses absolute control over one's own life. Mr Nicklinson has lost this in the worst possible way. His condition means that he does not even have control over whether he lives or dies, a power which most people possess, but, thankfully, never have to use.

In this over-legalistic world we live in, severely disabled people are denied this fundamental human right. The UN values national self-determination, it seems, but what about individual? I know the counter argument: you can't have greedy relatives or malicious doctors going around legally murdering people, but those are the sensationalist cases.

For me, Tony Nicklinson's case is not a grey area. It's black and white. He is able to communicate his thoughts and feelings, to express that he has no quality of life and his wish to end it. Were he able to kill himself, he would; but he can't, and the law will almost certainly rule against him as it has ruled against every other person (to my knowledge) who has made the same attempt in Britain.

So where does Virginia Woolf come into all this? Almost a century ago, she wrote something which I feel is appropriate here: 'Death was defiance. Death was an attempt to communicate, people feeling the impossibility of reaching the centre which, mystically, evaded them; closeness drew apart; rapture faded; one was alone. There was an embrace in death' - Mrs Dalloway. I'm not suggesting that Woolf would have been in favour of assisted suicide per se, but she clearly believed, both in her writing and her life, that individuals should control their destinies rather than be relentlessly powered over by the legal and medical establishments. Woolf's novel teaches us that life is entirely subjective, that we and only we know what it's like to live inside our own bodies. What gives anyone else the right to control me? Who voted for that?

Tony Nicklinson's fight is for all of us. We're all a blood clot away from ending up like him.

Department Stores

One of the best (and worst) things about being in a wheelchair is that you get to see on a regular basis just how insane the world really is.

I was in a department store the other day and I couldn't for the life of me navigate my way around it, such was the layout. The clothes racks were positioned so close together that I simply couldn't squeeze between them without my wheels making contact with those nice, crisp, brand new shirts.

Next time you're in a department store, take a look at this and ask yourself, 'if I was in a wheelchair, could I get through that gap without making a mess?' Now, I understand we're a minority and shops have to to be crammed full of stock to make a profit, but come on. Use your common sense. I'm sure if it had been a wet day and I'd been rolling through mud, and my wheels had spoilt a load of clothes, that I'd have been made to pay for it. Maybe I should do just that as a protest - nah.

I really think that imparting a bit of wheelchair wisdom to these corporations is my calling - I could charge a fair bit whilst making the world a better place.

Preliminary Observations

While I enjoy commenting on a wide range of issues, it's true (as I've been reliably informed) that my area of 'expertise' should be telling people about the life of a disabled person.

There's my first generalisation, for what exactly is a 'disabled person'? Is he or she physically incapacitated in some way; have they been born with only one arm; or were they involved in a horrible accent? Does this person have a learning difficulty, or, after enjoying 70 years of perfect health, has their knee, eyesight, hearing, heart given way? Society would classify all such individuals as 'disabled' - a term which my girlfriend thoroughly objects to - but we must remember that their needs and experiences of life are totally unique.

To the eyes of the world, I am disabled. One hundred per cent - born without legs in fact, though the doctors didn't know why at the time (maybe after 25 years they do now; maybe I should find them and ask them!), but the world isn't a silent, totally black place for me like it might be to a blind or a deaf person, nor is it an electric wheelchair from which there is no escape.

I realise, therefore, that, while I can give you my perspective on disability (sometimes serious; often comic), it is my own unique perspective. I do not claim to speak for all 'disabled' people. However, I also believe that every 'disabled' person would strike on some common themes if they did the same thing - their narratives would overlap ever so slightly, and I can only hope that mine will do so as well.

To begin, one of the things I've noticed about so-called disabled people is that they have an unspoken 'understanding' with one another. I walk (or push myself in my wheelchair) through a shopping centre or other public place and fellow wheelchair users will give me 'the nod'. This is a strange but universal phenomenon, I've found, for it has happened to me in the U.K, Australia, as well as the 'comfortable, convenient, friendly disabled waiting areas' of the many international airports I've frequented. This nod - a slight inclination of the head, often accompanied by an attempt at eye contact - appears to mean 'Hey, mate, how's it going? I KNOW HOW YOU FEEL. We're brothers in disability'. Or words to that effect.

I haven't got a big problem with 'the nod'. I'm not one of those 'disabled' people who tries to avoid other 'disabled' people because they somehow break the illusion of my own independence (although I think we're all prone to doing that from time to time). Seriously, though, what makes these people think I'm 'one of them'. Just because I'm sitting in a wheelchair and am clearly missing a couple of legs? A wheelchair, after all, can be a quirky fashion accessory.

What I prefer is when someone on crutches who has been injured, or someone pushing somebody else in a wheelchair for what might be the first time, comes over to me and says 'I never appreciated my 'ability' (as opposed to 'disability'), but now I do; you only miss independence when it's taken from you'. Those moments are nice, because they contain an important moral which I'm not ashamed to repeat here - enjoy your life, enjoy everything you're capable of doing while you can. I've often dreamt of running around a field as fast as I can, but I know that I'll never be able to this. Then again, if I'd been born with legs, I'd probably put them up on the desk, drink my can of coke, and watch TV like lots of able-bodied people do - who knows?

But 'the nod' - just don't. I have nothing in common with you other than that I'm in a wheelchair. I will treat you with the exact same courtesy as an Olympic athlete - no more, no less - so please return the favour.

Surprised by my irreverent attitude to disability? I surprise myself sometimes.