Wednesday, 25 February 2009

Ivan Cameron

A short life with a big heritage?

This has been a very busy week or so for me many things being pushed aside to await the attention that they need. Apologies therefore to those who have been waiting . It’s a busy life, being retired. So busy, in fact, that I altogether missed this morning’s news that Ivan Cameron has died at the age of six.

Ivan was the son of David Cameron, Leader of the British Conservative party, and his wife Samantha. Ivan was born with Ohtahara syndrome.

The Great British Media are having their wonted feeding frenzy. It does no harm to mention a couple of things in a more measured way.

Ohtahara syndrome, not cerebral palsy, not CE either

Ohtahara syndrome is a metabolic disorder, manifesting in very severe, very frequent epileptic fits, accompanied by very severe mental retardation and by motor-disorder. See for example:

http://www.ninds.nih.gov/disorders/ohtahara/ohtahara.htm

The condition is very rare. I have never met a child with Ohtahara, nor ever had the need to read about it, but I see no reason to expect other than it must have the most serious systemic effects upon all aspects of a child’s development and upon family life.

Children with this syndrome do not ‘have cerebral palsy’, though from the media coverage, you might be forgiven for thinking that Ivan Cameron’s primary developmental disorder was in control of movement and posture.

One cannot blame the hacks for this (though some medical correspondents really ought to be able to find better advice): there are plenty of vested interests using the opportunity to advance their profile and agenda. And just perhaps some cooler, more informed public discussion will emerge before the story is dropped… we shall see.

This morning I was called up by a couple of broadcasting stations (apparently because I ‘deal with cerebral palsy' – another area of misunderstanding, this time about Conductive Education) that refuses to do away). They both asked to contribute to on-air discussions. I managed to field one call, explaining that this was an epilepsy issue, not on of cerebral palsy, and the researcher went off happily to find somebody to talk on epilepsy. It was too late to divert the other one, Sky News, since an on-line discussion board has already been set up and announced. Sky already had an epilepsy charity and another with cerebral palsy fixed up and, making my position clear, I agreed to speak up for Conductive Education.

It would after all be nice to be putting the word about again for CE, after a several years’ gap. I am not sure how much it is possible to say anything terribly coherent in such a situation but it at least gets the cause a little exposure, and you never know! Judge for yourself at:

http://news.sky.com/skynews/Home/UK-News/Cerebral-Palsy-After-Death-Of-David-Camerons-Son-Ivan-Find-Out-More-About-Illness-In-Web-Chat/Article/200902415229485?lid=ARTICLE_15229485_CerebralPalsy:AfterDeathOfDavidCameronsSonIvanFindOutMoreAboutIllnessInWebChat&lpos=searchresults

And I promised to post a list of places where conductors work in the United Kingdom, here on Conductive World. I shall do it this evening.

Politics, philosophy and economics

David Cameron may well be the next Prime Minister of the United Kingdom. He and Samantha have faced the problems known around the world to the readers of Conductive World, writ all the larger perhaps because of the particularly devastating effects of Ohtahara syndrome. They even had, when he was still a back-bench Member of Parliament, their rite de passage brush with the local education authority and with an educational psychologist who felt that Ivan should be included. Ivan was six years old when he died, long enough for the Camerons to have become members, and this usually means life members, of a great invisible club.

It is being said that the experience of bringing up Ivan has done much to create David Cameron's liberal ideas on welfare reform. When he was elected Leader of the Conservatives his first act was to create a Commission to enquire into ‘special educational needs’ That this laboured mightily and produced but a mouse was not David Cameron’s fault but that of a committee that took evidence presented almost wholly within existing paradigms, shrouded in a smokescreen of vigorously advocated special interests, without itself having the tools or framework to cut through the smoke and identify fundamental issues.

We should not blame his committee for this. Mary Warnock, a professor of philosophy at Oxford, was similarly blinded by the smoke when she chaired her committee all those years ago and failed to see the underpinning philosophical problems. And the Government has had two committees report with a third on its way (I have to admit to losing count: they all chew over the same tired old gristle and come up with nothing new).

A Royal Commission on the state of services for children and adults with disabilities, their families/carers, now that might offer the structure and the tools to do the job.

Just remember, whatever happens, there is a cost. The human one will fill the British media for a few days, after which it will be the economic one that again becomes decisive.

There are so many competing and legitimate claims. One can but hope that Ivan’s life will remain with with David Cameron the man, when David Cameron the politician has to take the lead on the priority that society might grant to bringing up its disabled citizens and their lives as adults. Ivan's life has run its course. David Cameron will 'understand', and may one day be in a position to do something for all those families whose children live on.

2 comments:

  1. Andrew, the link to the Sky News discussion works but its an enormously long URL. You might like to visit www.tinyurl.com where you can transform long URLs into something like this:
    http://tinyurl.com/df2xyt
    which is the 'tiny URL' swapped for your long one - much easier to copy and paste, if need be.

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  2. This morning's Guardian newspaper carries an interview by Joanna Moorhead with Jo Baker of Megan Baker House.

    The interview is the only published response so far from institutional Conductive Education in the UK to the death of Ivan Cameron.

    It would be a hard one to beat.

    You can read Jo's interview by cutting the following URL and pasting it into your browser:

    http://www.guardian.co.uk/lifeandstyle/2009/feb/26/cerebral-palsy-child-death

    ReplyDelete