Down's syndrome news

Radio 4's excellent programme Born with Down's - which you can listen to here - has prompted a flurry of media commentary, to do with the fact that 15% more people are choosing to continue with pregnancies where Down's is diagnosed.

Here's a piece from The Guardian, one from The Independent and here's one from The New York Times. Dominic Lawson believes that doctors are prejudiced against Down's, and encourage too many terminations. Bryony Gordon
interviews the family of 13-year-old Ben Adkins, who has Down's. The Times' Simon Barnes writes about his son Eddie (both are pictured).

If you're feeling a warm glow, here's a piece that says the new figures aren't to do with shifting attitudes, but rather with number-crunching. Hm. It seems ludicrous to me to suggest attitudes haven't changed, when the most cursory glance shows that children with Down's, once stared at anxiously and called 'mongoloid', are now - depending on where you live, admittedly - part and parcel of everyday life.

As for attitudes to disability shifting in a broader sense: my eldest son, who is 16 next month, had to write and deliver a speech about any aspect of chromosomes for his science homework last week. He decided to write about chromosomal anomalies, specifically DiGeorge, using his sister as an example (it was a very assured and touching piece of writing - I might ask him if I can stick it on here). My point is that a 'cool' 16-year old, whose life revolves around parties, gigs and girls, would perhaps not have breezily drawn his entire class's attention to his sister with special needs twenty, ten, or maybe even five years ago. As far as he is concerned, there is nothing to be remotely furtive or opaque about. If that isn't an example of a shift in attitudes, I don't know what is.

Comments

[Marion Stanton]

I just got back from the pictures. I went with my daughter Katie and my son Dan. Dan picked us up in his van since we live on the way from his flat to the cinema. We had a great time. Katie and I cried at the end of the film but Dan was being a typical man. He dropped us home afterwards. Oh, by the way, Dan has severe cerebral palsy. He lives in his own flat and directs a team of personal assistants. I am very glad he is who he is and so is he.
Marion

[Maria]

Hurrah! My little girl was being treated for her heart problems in a major London hospital and I was delighted to see babies and children with Down's Syndrome receiving major life saving heart surgery with all the support offered afterwards in terms of play and education that other non-DS children have. The nursing staff told me that all children receive the same care, all are equal and deserving of whatever medical intervention, treatment and rehabilitation that is available today - but this was certainly not the case two decades ago. Attitudes have most definiely moved on.

On a personal note, I know 3 adults from the village I come from who have DS and they live happy, productive and semi-independent lives. They are actively involved in the local church and local sports teams and one of them has a part-time job in the nearby town where he works as a retail assistant in a department store.

[rosie]

Thats lovely about your son. You must feel very proud.

[Annabel]

I made a comment yesterday which hasn't appeared yet so it may have vanished into cyberspace - apologies if it's reappeared and I've been published twice! I have had another thougth to add:-

What I've found interesting about the debate is the number of people caring for adults with DS who are evidently very severely disabled. I have a 9 year old son with DS who's benefited from surgery to correct serious medical issues which simply couldn't/wouldn't have been done 20 or so years ago. I do wonder how many of these adults have been made more disabled and dependant by untreated medical conditions and lack of access to education than they have by having Downs Syndrome?

Nearly all the children and young adults I know with DS are healthy and thoroughly enjoying their lives. They may be a bit slower but I don't know any that aren't fully active and in some form of full time education. Many have had quite major medical intervention. Most of the young adults I know are living semi independently and the only ones I know living with their parents are their through choice. One young person I know through our support group has recently bought her own house.

I am sure that the world my child is in is a very different place from the world 30 or more years ago. I think we’re in a much nice, kinder and more tolerant place which I find very heartening.

[Polyquats]

There is change happening here in Australia too. The Immigration minister had intervened to grant a permanent visa to a German doctor who has a son with Down Syndrome. http://www.abc.net.au/news/stories/2008/11/26/2430367.htm?section=justin While this decision has been largely driven by the shortage of doctors for the rural area where this doctor works, the Minister has asked the department to review the way in which applications for residency for people with disabilities are treated. This is way overdue. In the past, families have routinely been refused entry if they have a dependent who is disabled. This has been applied to people who have come to high paying jobs (and can afford the necessary care) and refugee families (for whom the disability is just one of many difficulties). If my daughter and I lived somewhere else, we would not have been able to migrate to Australia, no matter how valued my skills, nor how much wealth I brought with me.

I am hoping we get a change in the Australian policy on disabled immigrants in the near future.

[Annabel]

I loved the piece in the Times - he managed to articulate everything I think, but don't have the words to express.

One thing that's concerned me about the coverage is the implication that there are 1000's of women rushing off to embryo selection clinics to choose a trendy baby with Downs Syndrome; which is of course not the case. I can well understand why parents would reject the unpleasantness of a late abortion in favour of a slightly unusual and margionally harder life.

When my son was born with Downs Syndrome nearly 10 years ago, I left hospital with him determined to change the world. It was a very humbling experience to discover that it had changed, enormously, and I just didn't know. I think the world my child is in is vastly different from the world 30 or more years ago and it's a far kinder, more tolerant and better place to live.