August 2011 Archives

When telling a story of adversity, of heartbreak, suffering and triumph of the human spirit, of heroism, many people will reach for a cliché or two. There is also a tendency to simplify details in order to find the 'human interest.'

This can be frustrating, particularly for anyone with personal experience of the adversity/tragedy that besets the subject of such inspirational tales. When it comes to spinal cord injury, as well as emotional turmoil, most people affected find themselves plunged into a bewildering world of 'levels,' symptoms, mobility issues and long term conditions.

Despite the massive potential for different symptoms and outcomes (some people even manage to break their back but not damage their spinal cord), the simplified version of events prevails in most media coverage. All too often, the story told is one where our hero is told he will never walk again, only to defy the medics and achieve the impossible.

Don't get me wrong, I am pleased for anyone who defies the odds and makes any kind of unexpected recovery. But it's frustrating when the story suggests that it's not the complex nature of spinal cord injury that leads to such a wide range of outcomes. No. It's all about the guts of our hero. If you are bloody-minded and determined enough, it's possible to beat the prognosis.

It's a heart-warming tale. Inspirational. But what of those who don't defy the odds? My paraplegia was instant and (so far) permanent. Is this because I'm not determined enough? should I have ignored the medical professionals? Was I too quick to accept my fate?

Of course not. I am diagnosed as T12 ASIA A. This means that I have no movement or sensation anywhere below the nerve bundles that leave my spinal cord from my twelfth thoracic vertebra. My spinal cord is 95% severed, my T12 vertebra still out of position and fused with my L1.
 
If I put calipers on, I can get up on two feet. But it's hard work and very few people of my level ever master functional walking this way.  An incomplete injury (some function below my level of injury), or a level or two lower, and I might have found it possible to get up on two on a regular basis.

But all of this takes some explaining. It's not a single line story. And no amount of 'Rocky'-style training montage would have got me running up a flight of stairs again. Would it?

My observations about Incapacity Benefit are now on The Guardian's website.

The discussion around benefits is often a heated one. The lines seem to be drawn between those who believe that the system is being exploited by most claimants and those who feel that they have been marginalaised by society because of their circumstances.

In my opinion, neither the old nor the new system is fit for purpose.

There can be little doubt that Incapacity Benefit was used in the past to massage jobless figures. It is surely no coincidence that the level of Incapacity among men of working age increased in areas like the North East of England at a time when many industries were in terminal decline.

But there are also many people who have a genuine case, but who would be deemed fit for work by the new system. There is also a wider issue. Many employers are reluctant to employ people with disabilities, particularly those with chronic conditions or who have a history of mental health issues.

Society needs to be able to provide meaningful and adequately supported opportunities for people with disabilities, we need a safety net that recognises health issues and the difficulties involved in finding alternative income. Until then, the existing system remains the only way of preventing many people  from slipping into homelessness and despair.