December 2010 Archives

Today's article is a profile of an extraordinary man.

I met Adam Thomas when he came to talk at the RSA design course recently.

He was a key figure in the Rights Now campaign in the early nineties that led to the formation of the Disability Rights Commission. The Commission then produced the legislation that became the Disability Discrimination Act.

During the campaign, Adam and others took direct action such as handcuffing themselves to buses (he met his wife when they were both chained to the same bus). It was edgy stuff, but anyone who enjoys the level of access that we now have owe a debt of gratitude to Adam Thomas and others like him.

Yes, it's not perfect, but I can get on a bus, and I can complain if shops or restaurants don't make reasonable provision (I will revisit that particular fight in due course).

All of this comes down to a culture shift, which is usually described as the change from the 'medical model of disability' (the shortcomings are individual, and disabled person needs to be cured or managed in some way) to 'the social model of disability' (the shortcomings are social and need to be changed in order to be more inclusive).

This may seem a bit complex or academic, but it is really about a culture shift, and an important one at that. We are moving to a point where excluding disabled people from access to services or the built environment is now seen as unacceptable rather than 'one of those things'.

I should explain for those of you overseas, we are having a bit of a Dickensian winter spell. I don't mean kids up the chimney, but rather a thick blanket of snow and empty streets. With the exception of the high streets, the snow in London creates a rather enjoyable peace. The traffic is greatly reduced, the snow muffles the sound, and people who are out and about tend to be in cheerful mood.

This idyll usually lasts a couple of days, before white becomes browny-grey, and everyone gets mightily annoyed by the piles of icy black slush that make the pavements lethal and the roads look like drainage ditches.

Against all the odds, I have been getting out ion the snow. We've even built a snowman. It is still fun. I am pleased that I bought a pair of chunky tyres for the beach, as they are coming in handy for the snow, too.

But even with these wheels, it's very heavy going, trying to get around in a wheelchair when there is four inches of snow on the ground.  I am also conscious of just how cold my legs and feet get, and with the issues around my diminished circulation (as my leg muscles aren't busily pumping the blood around), I have to make sure that I don't get frostbite.

It's one thing to lose a few toes while conquering the North face of the Eiger, quite another to do so while building a snow man in a front garden in Hackney.

On the plus side, I have been able to point out to concerned passers by that, while pushing a wheelchair in thick snow is very hard, at least I don't have to worry about falling over.

For a fraction of a second I pondered the possibility of going sledging in the park with Rosalie (for any Australian cricket fans, I 'm talking about sliding down hills in the snow, not standing around swearing at people). But the prospect of watching my feet catch in the snow before disappearing under my backside as my hips are dislocated to the horror of everyone else on the hill has rather put me off.

Instead I will spend the afternoon making soup and biscuits. And sending Rosalie out in rags to beg a plum pudding or two. Gawd bless us, one and all!

As I lurch forwards, blinded by the dazzling aura of technology which is so very last year, I find myself pondering the need for a smartphone.

To those who have been iPhone-ing or Balckberry-ing for years, this may seem an absurd subject to consider. For the people who sit dribbling on the bus or in cafes while they scroll up, down and sideways through life, I might as well be pontificating on the relative merits of having a skull to keep my brain in.

I can see the value, especially as a journalist (not a title I'm yet comfortable with. I'm convinced someone is about to unmask me as an impostor any day), and there have been occasions when being able to access e-mails on the move would have been very useful.

Such thoughts inevitably make me think back to rehabilitation in the spinal unit. In these memories I am wheeling nervously around the hospital in loose fitting comfortable clothes with a mobile phone on a cord around my neck.

I was nervous because my balance was poor at first (learning to sit up is commonly one of the biggest first hurdles one has to conquer after a spinal cord injury). But the phone was not a glorified personal panic button. The mobile enabled me to speak to friends and family at any time of day or night. The phone meant that moments of isolation could be filled with words.

people called me from all over the world to have a chat, and this helped to counter the inevitable feeling that I had of having fallen through the cracks. While my log term future seemed to have vanished, I could devote time to more modest, immediate plans. I could ask friends or family to bring me obscure food stuffs or arrange for personal belongings to be brought up to the hospital. Through this time, I found I would often try and imagine what rehabilitation would have been like had I had my spinal cord injury before the advent of mass electronic communication.

 So now I am getting sucked into the next level of distraction. I have an increasing feeling that silence will be presented in museums, along side dial phones, fountain pens and letter paper.

But for all that, I have the confidence to do many things on my own because I feel that help is mine to summon easily should I need it. this makes driving or even pushing a fair distance much less intimidating. And I can also remember what it feels like to depend on the phone for my sanity. The old adage is "Don't shoot the messenger." It's not his fault if we burden him with sacks of junk mail.

My article in today's Times is in support of the Spinal Injuries Association, one of the newspaper's nominated charities for Christmas.

I will put a link here, but due to the online content no longer being free to access, you will need to be a subscriber to read it.

In summary, I wrote about the important role of the SIA's peer support worker who came to see me when I first got to The National Spinal Injuries Centre at Stoke Mandeville.

There is a tacit understanding between people with spinal cord injury which is difficult to put into words, just as it is difficult to put into words the feeling of having a spinal cord injury, and facing a life with paralysis (I should know. I have made a career of it, after all).

We are a funny lot. People with SCI come from a wide range of backgrounds and life experience. We have widely different levels of paralysis with widely different implications on health and independence. We are parents, siblings, children, lovers, pensioners. Some of us are bloody minded, some of us are angry, many of us are happy, many of us are supportive, a few of us are pretty unpleasant. Just like everyone else. That's the point. We are everyone else.

But what we all share is a common experience. Even though there difference between a C4 and an L5 spinal cord injury is immense, it is still closer than the difference between SCI and non-SCI. While we aren't all able to offer support to each other, many of us are. Just like everyone else.