BOC another interesting article re Down's syndrome

Lisha

Well ok I know Brendan o Connor is more offensive than marmite to some but I think he is ok.

I read his article in today's sindo and once again I was blown away by his article re Down's syndrome .

See what you think, if there was a 'cure' that would erase a persons Down's syndrome would you take it, and effectively alter your child's personality ?

I think I would hate to admit that child version 2 would be a 'better' version.
But then if it dramatically improves the child's life experience would it be the best option for the child?


http://www.independent.ie/opinion/analysis/brendan-oconnor-would-fixing-our-child-with-downs-mean-wed-be-given-back-a-stranger-29436268.html

liliq

Do you have a child with Down syndrome?
Do you know any children or adults with it?
I haven't read that article, but I know one baby, one toddler and one adult with Down syndrome and I can't imagine any of their family or friends wanting to change them in any way, especially if it changed who they are or what makes them them, even if part of that is their special needs.
I'd find it so incredibly offensive if someone suggested to any of my friends that they or their children need to be cured.

Lisha

That's exactly what Brendan was saying liliq. He said he sees his daughter as being just perfect as she is.
He was driving when he heard in radio that scientists were exploring turning off the gene that causes DS. He was disgusted and appalled .
He said that if his daughter was 'altered' it would be like she was a stranger .
I found it a very moving and thought provoking article.

Btw neither of my kids have DS but I do know kids who have differing levels of learning difficulties. The majority of parents just seem to accept and adore their kids as they are and just get on with life. Their kids are their kids

liliq

Lisha wrote: »

That's exactly what Brendan was saying liliq. He said he sees his daughter as being just perfect as she is.
He was driving when he heard in radio that scientists were exploring turning off the gene that causes DS. He was disgusted and appalled .
He said that if his daughter was 'altered' it would be like she was a stranger .
I found it a very moving and thought provoking article.

Btw neither of my kids have DS but I do know kids who have differing levels of learning difficulties. The majority of parents just seem to accept and adore their kids as they are and just get on with life. Their kids are their kids

Re reading my post it sounds a bit aggressive, I didn't mean it to be, apologies if it came across like that.

I guess a lot goes on in the name if science, and as a scientist I'm fascinated by genetic manipulations, but definitely not in these kind if cases. The toddler I know that has ds has one of the strongest, funniest personalities of any kids I know. I can't imagine someone suggesting he is anything other than just right.

Their kids are their kids is exactly right of course there can be extra problems associated with ds and of course it's not easy making sure that the impact is minimised but once someone wraps their heads around that, it just is the way it is.

MrCreosote

He's being needlessly semtimental I think. He's talking as if an individual's personality is fixed. His daughter will have a different personality in 10 years time regardless of what happens.

If a treatment like this works, and that's many years away at best, all it would do is bring a person down a different pathway of personality development. And if it reduced the risk of a whole load of serious medical problems, I'd say it would be worthwhile.

ash23

I can't see why any parent wouldn't want to "fix" a childs medical problems. I'm not talking about Downs syndrome as such but moreso the problems that can be associated. I mean, he says as much in the article. Their daughter has glasses, was going to get hearing aids but then didn't need them. She has speech therapy and I'm sure as she gets older she will have additional treatment for any other physical or learning difficulties she may have.....as would any child.

If Downs Syndrome doesn't define a child, then why would they be different without it? Why wouldn't a parent try to take away the associated problems they have and make the childs life easier?
I have a disability and if there were a cure I'd take it in a heartbeat. I wasn't born this way but it's a degenerative neurological problem and it's part of me, hardwired into who I am. But I don't want it.
I'll be honest and say that personally I think it's more socially acceptable for people to want to get rid of an acquired problem than one that a person is born with.

For example, if you were 18 and went blind, people would rejoice if there was a cure. If you were born blind it's less acceptable to say "I wish they could see". Same with deafness or intellectual disabilities. I can see why some people feel that way but for me personally, if I had the chance to make my child healthy and for her life to be easier, I'd take it.

lazygal

I don't think he can speak for every parent. I know parents who'd happily 'fix' the problem of Downs and not have the worry and stress for life of how they'll cope with the disability, especially when the rest of the family feels they have to pick up the slack as the parents get older. I know if I had a child with a disability I'd want to fix it, such as mobility problems or learning difficulties. Why is it taboo to say 'I want my child to be as normal as possible'?

Sleepy

I'd freely admit that if it was my daughter, I'd be looking into it.