Every time I listen to radio 4 they are discussing disability

[Jenkeywoo]

Is it all on the back of the original JH thing? last night it was genetic testing and the right to choose not to give birth to a disabled child. This morning it was about very premature babies and whether they should be left to die. I understand the need for discussion but it just seems as if has become the big thing to talk about at the moment and some of what I hear is upsetting. I know I could turn off the radio but I find it compulsive. I just feel that disabled children are very vulnerable in the media at the moment, it all seems to be about not coping and not wanting to have an imperfect child. As my sister said recently when I was talking about having another baby "oh well it's good that cerebral palsy isn't genetic because you wouldn't want to risk having another one would you'. .

I accidently listened to that programme last night Jenkey, I was in the bath and couldn't reach to turn it off, then got interested.

What got to me was that the speakers seemed convinced that if you eliminated genetic problems then you would eliminate disability, when something like my DD's cp was caused more or less at birth and I could have had a scan a day throughout pregnancy and she would still be disabled.

The thing is I wouldn't 'want' to have another child with CP, in that I'd rather DD didn't have CP, because of the difficulties it will bring throughout her life. But I'd be hard pressed to terminate a pregnancy because of disability now that I have a disabled child of my own.

In fact I'm dreading being pg again in case, say, I'm found to have a high risk of DS, as DH says he couldn't cope with another disabled child, whereas I don't think I could bring myself to terminate just because of disability. It's not the end of the world.

Gone off on one, sorry.

Coco - you have summed up exactly how I felt about the programme. There is no scan that could have predicted my dd's CP and quite frankly I'm glad there wasn't as I wouldn't have wanted to be in the position to have had to make a decision of whether DD should have lived or died. I wouldn't have chosen CP for DD but it isn't the curse I always thought having a disabled child would be. I have risen to challenges I never thought possible - it gave me the impetus to finally get out of teaching which has got to be a good thing! It has enabled me to meet people I would never have talked to before and it has opened my eyes generally. I do sit back and imagine DD walking and not having CP sometimes but then I wonder if she didn't have CP would she still be the little girl I know and love? I too have thought a lot about having another child - I do wonder how I would cope with another disabled child but DH and I have decided we not go for the nuchal scan or any other tests. It's an emotive issue but I could not make a decision to exclude a disabled child from our family and I guess if we are in that situation we would rise to the occasion. If someone told me two years ago when I was pregnant that DD would have CP I would have wailed 'no, I can't cope' but here I am coping away.

When ds2 was so ill, so tiny & frail I wondered if we would be able to ask the DR's to stop treating him if we felt things were so bad that we were just prolonging his suffering.
Thankfully it didn't come to that, but honestly I don't think we could ever of made that choice, its a natural parental instinct to fight for your child & that starts from day 1.
Sadly for some parents that instinct does mean they & the DR's have to make some heartbreaking choices.
But as for leaving very prem babies to die -not without a fight!

Asfor ds2 I guess the dr's could have predicted his CP with scans, would that be a reason not to treat him? His ASD is also a result of his prematurity & far more disabling than his CP but the DR's certainly were not able to predict that.
Jenky - your sisters comments are awful.
I see both my boys as perfect, they just have different abilities but don't we all!

well said jenkey. These debates are scary cos the majority would elimante all us disabled people.