Thursday, March 05, 2009

Recommended reading

This artice in yesterday's UK Sunday Times by columnist Dominic Lawson. It reflects on the meaning and legacy of six-year-old David Cameron, the son of British Tory party leader David Cameron who died recently from complications of Ohtahara Syndrome, a severe form of cerebral palsy which also involves a rare type of epilepsy. Here is an excerpt:

While we are no longer a country in which children with congenital disabilities are institutionalised and for ever hidden from view, there remains a visceral public fear and even horror of what appears to be the “otherness” of such conditions. This can be seen in the number of formal complaints to the BBC by adult viewers upset by the appearance of a presenter of CBeebies, Cerrie Burnell, who was born without a lower half to her right arm. Apparently some of the comments on the CBeebies website - a children’s channel, for heaven’s sake - were so vicious that the BBC felt compelled to remove them. This is actually very similar to racism, when fear of otherness mutates into repulsion.

Yet even those who think of themselves as sympathetic can be astonishingly insensitive - in the nicest possible way. I couldn’t help noticing how many people expressed the view that the death of a totally dependent child with multiple disabilities, including an undeniably distressing form of epilepsy, must also have come as a relief to Mr and Mrs Cameron.

I too am the father of a child with a congenital disability - my younger daughter, Domenica, has trisomy 21, also known as Down’s syndrome. When she was born, an acquaintance who had a child with cerebral palsy told me: “Your problem won’t be that you will not love your new daughter, but that you will love her too much.” He was right, of course: it was a salutary warning not to neglect the needs of siblings.

Love should never be confused with pity, a sentiment we feel only for those whom we really don’t know at all. It infuriates me that children such as Domenica are invariably described as “suffering from Down’s syndrome”. In what way are they suffering? They have no disease. They have no ailment to “cure”, except - via the process of antenatal screening - their very existence.

The essay in full is here ... See also: The funeral of Ivan Cameron from the UK Times

(h/t to Patricia Ee Bauer)