Ivan Cameron – a death not in vain

Yesterday, when there was a fatal plane crash in Amsterdam and several British soldiers were killed on duty in Afghanistan, one other story dominated UK headlines – the death of six-year-old Ivan Cameron.

Normally, I’d consider it inappropriate for such a private tragedy to be given priority over other news that is arguably far more important, particularly when it involves the child of a serving politician as I don’t generally consider their children any more deserving of column inches than the children of the not-famous.

Yet, for once I was pleased that Ivan’s death pushed everything else off the radar. Ivan was profoundly disabled, diagnosed from birth with Ohtahara’s Syndrome – a rare and extreme form of epilepsy that is virtually untreatable and guarantees an early grave. Disability is seriously underreported because it is not “sexy”. When it does make the papers, the disabled are usually described as “brave” or “plucky” or something else equally patronising. There’s nothing brave or plucky about quietly getting on with living life to the best of your abilities despite what fate has thrown your way, because it’s just normal. More than anything, the disabled long to be seen as normal.

If Ivan Cameron achieved anything in his short life it has been to highlight awareness of disability, the possibility of living a meaningful life even when as severely disabled as he was, and the realities for thousands of parents of being a fulltime carer of a disabled child who needs constant looking after. Even David Cameron, born to privilege and educated at Eton, could not be cushioned from that. Yesterday’s coverage rightly included reports on how Ivan’s disability had changed his father’s views and experience.

Epilepsy is the commonest neurological condition, yet often shrouded in myth and stigma, and much misunderstood. There are 450,000 people in the UK with epilepsy and around 70% will gain good to complete control of their seizures through drug treatment. Sadly, 1,000 will die every year from SUDEP (sudden unexplained death from epilepsy), and 400 of those deaths are preventable. Few new patients, when diagnosed, are ever told of the risk that they can die from a seizure.

Perhaps Ivan’s death will now mean that more funding finds its way into epilepsy research so that better treatments can be developed. Perhaps it will mean that more help will become available for carers. Perhaps it might even lead to those who need to claim disability benefits not being treated as potential fraudsters. And maybe, just maybe, if the Tories return to power, it might mean a little more care being taken of our wonderful NHS, which served the Camerons daily for six whole years.

Sifting through some journalistic comment late last night, it was disappointing to see the predictable complaints about “tabloid hysteria” over Ivan’s death and coverage of the Dutch plane crash and other stories being pushed further down the agenda. Such cynicism makes me want to cry. Journalists should be looking for stories that resonate with readers. Ivan’s was a profoundly human story that will have done just that for millions of families in the UK who deal with disability on a daily basis.

The press should remember that. At a time when the industry is in crisis, it’s not a good idea to alienate the readers who help keep journalists in work.

RIP Ivan.

(Declaration of interest: I have epilepsy and will shortly be publishing a book about it.)

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4 thoughts on “Ivan Cameron – a death not in vain”

  1. Hey, Bendy Girl, good to see you here and thanks for the comment! Hardened cynical hack that I am, I’ve been deeply affected by the coverage of Ivan’s death – it’s hard not be aware of your mortality risks when you have epilepsy and it’s left me oddly teary. But on the plus side, when such a publicly prominent parent loses a child like this, it does give hope for the future for those of us who have to fight daily for our rights. If Cameron ever becomes PM, I hope he’ll have the courage and wisdom to protect health services and disability rights.

  2. Just to add – a quick glance at today’s front-page splash in the Sun sees Ivan described as “courageous”. Given his severe disabilities and developmental delay, courageous is hardly accurate for him. Even dad David said Ivan’s life was “very tough” because he was almost totally unaware of anything going on around him. A good example, then, of patronising press coverage. And thumbs up to David for being so honest about the reality for Ivan.

  3. Totally agree with every word. I have a couple of cousins with varying degrees of epilepsy, and a friend whose brother has Down’s Syndrome. Coverage of disabilities is one of those things that gets to me. Great post.

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