Rights and wrongs of miracle cures

Rights and wrongs of miracle cures

Following the announcement of yet another means of rectifying paralysing spinal injury, Peter White says that such developments are usually a mirage and do nothing towards the real empowerment of disabled people.

You would need to be a monster to grudge Darek Fidyka the joy of walking again, or a father the right to raise money to find a cure for the spinal injury to his teenage son after a diving accident. I grudge neither. What I do worry about is the lack of proportion in our reaction to these events and the idea that some kind of ‘miracle cure’ is the only satisfactory end to a story about disability.

It’s an idea fostered, whether deliberately or not, by journalists in search of dramatic headlines, doctors in search of renewed medical grants, and a public longing for happy endings.

Let’s be clear – and to be fair the doctors in Darek’s case have been pretty clear – the technique of using cells from the nasal cavity to grow and enable Darek to take a few steps using a frame will still, even when perfected, only help a very small proportion of those with spinal cord injuries. As I understand it, the stab wound which caused Darek’s injury resulted in a relatively straight lesion. Most spinal injuries are far more complex than this and will probably not respond to this treatment alone.

No matter, one understands that medical progress is all about tiny, incremental steps. What’s worrying is if it’s treated as if it’s the only thing worth fighting for.

I met the Superman star, the late Christopher Reeve, for a couple of long interviews about his determination to walk again and his wish to use his money to make this possible for other people. All perfectly understandable, but I couldn’t escape the feeling that this had now eclipsed everything else in his mind, including all the other aspects of living which still remained to him.

This idea was far more eloquently summed up than I can manage by Jane Sowerby of the spinal injury charity, Back Up, on the Today programme the other morning, when she described why walking a few steps would be no substitute for the mobility given to her by a decent quality wheelchair in order to get on with all the other things in her life she wanted to do. She also raised the other important issue to which this gives rise: the false hope one individual case can generate for thousands highly unlikely to be affected by it.

I may not be able to claim direct experience of spinal injury but if I had a quid for every ‘bionic eye’ cure for blindness story I’ve had to try to put into perspective, I wouldn’t be needing to write this column. The truth is that they all invariably involve wearing amazingly clunky equipment for tiny improvements in sight.

What’s frustrating is that there is a ‘cure’ for disability. Not complete, maybe, but one which can affect millions rather than tens. It is fair and caring social policies which give people the resources to pay for the human and technological help which can even up the scales a little bit.

And we seemed in my lifetime to be getting there with benefits such as the Disability Living Allowance which was designed to compensate for the extra costs of daily living. But we are now in a situation in which this help is being systematically eroded (with the support of all the major parties) in the sacred name of clearing the deficit (that’s the one we’ve been living with since the end of the Second World War, by the way).

It’s not necessary for me to list all the ways in which that help is being eroded, I’ve done it too often before in these columns. What I will say is that we’re constantly being told how ‘vulnerable’ we are as a group. Well, if that’s true, we are vulnerable not to the chances of jealous husbands stabbing us in the back – as in Darek’s case – or with diving on to sandbanks. What millions are vulnerable to is the belief that the relatively small amounts of help that were going to quite large numbers of disabled people were being abused and were the result of a scrounging mentality.

I’m still haunted by the question an editor wanted me to ask when issues of benefit cuts cropped up, “Don’t you think disabled people ought to be prepared to face their share of austerity cuts?”

I had thought that most of the changes brought in over the previous 20 years or so had been an attempt to even up the score a little bit. Believe me, it was redressing the balance far more than a handful of ‘miracle cures’ however dramatic.

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