MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.
Wednesday, 3 December 2008
Good news
Last week there was an excellent article in The Independent by Dominic Lawson provoked by a programme on BBC4 'Born with Down's' which revealed that there were more children born with Down's Syndrome last year than there were before widespread screening was introduced twenty years. Lawson has a daughter with Down's, called Domenica, who gives him immense joy. On the Today programme they were attributing the rise to the increased public acceptance of Down's. The headline of the article is 'Shame on the doctors prejudiced against Down Syndrome' (see the link), and he points out that there is still a presumption for termination in some parts of the medical profession not least on the spurious ground of cost to the NHS. When I heard the news item, it seemed to me one sign of resistance to the prevailing culture of eliminating any form of 'disability' from society, and as such immensely encouraging. If you've read my book, I quote from Angela Beise reflecting on the poverty of a world without compassion and the dangers of removing 'imperfections'. If it's true that we are welcoming those we used to hide away, that is very good news, in my book.
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Hi Michael,
ReplyDeleteI do honestly believe the U.K. is more tollerant of those who have disability these days, but having worked with many people who have Down's Syndrome, I feel we have a long way to go before society fully accepts disabled as worthwhile members of the community.
The problem seems to arise when families are no longer able to care for people who cannot independently cope physically and/or mentally. They then have to turn to charitable organisations or the State for residential care.
Facilities are limited and a strong case has to be put forward for appropriate care. All to often people who have Downs are reliant on the determination and articulate presentation by parents, carers or advocates to get results! Like life, it is very much a lottery.
Down's children are living much longer these days and whilst there are some, as with other disabilities, that can cope with life fairly independently to a good age, the infrastructure they/we rely on is not always that reliable!
We have moved a long way with social integration, but there is still, in my opinion some distance to go. I shall perhaps elaborate some time on a more personal level.
In the meantime keep up the blog. Your writing is clearly bringing a lot of pleasure and interest to others.
Rob