To think 'incompatible with life' is unacceptable

[TheDisillusionedAnarchist]

Another day, another thread on here about screening. Another person describing certain disabilities as 'incompatible with life'.

Surely this term is disablist and unacceptable and needs to go. Really is it okay to describe people as 'incompatible with life' . What does it even mean?

Babies with conditions like trisomy 13 or 18 or anencephaly are very much alive, even if they do not survive to birth , they matter to the people who care about them. Their parents and family and some do survive sometimes for 20 and 30 years. Yes they have severe disabilities, yes they require support to live but they are alive.

Today my daughter with trisomy 18 celebrates her first month birthday. Aibu to hope that today might be the last time I read 'incompatible with life' to describe her on here.

hangers on

jesus christ.

We had a geneticist tell us our son has Mental Retardation ..... Every other Dr had called it developmental delay !
It is what it is..... He is delayed ... Very!!! Let them used thier archaic terms

Oh dear.

Hopefully she will be banned

Just about to add my support to those calling for talkin's post to be deleted but it has already been done.

Good call mnhq.

Aside from the awful terminology, this thread has made me rethink my opinion on genetic and prenatal screening. That and a conversation i had with another mum today. She was put under considerable pressure to terminate her pregnancy as she was told her DS would have severe disabilities. At the time, her 10 year old DS was clambouring over the inflatable in the swimming pool with my DD. He has a few issues, but goes to mainstream school and the idea that he could have not been born because of the dr's opinion that he "wouldn't do" made me feel sick.

I didn't get to read Talkinpeace's post but I imagine from the responses it had to do with quality of life (ie dd won't have it) or resource arguments (wasting nhs money on her). I'm not offended if so, as far as I'm concerned the post can stand. We were told worse by consultant neonatologists in pregnancy. We've been there and heard that and we're going to hear it for the rest of Rumer's life.

I am offended perhaps by the idea we didn't think about the issue of quality of life before pursuing this course. I wrote seven pages for an ethics committee justifying our position, you can read it on www.internationaltrisomyalliance.com/submission.html (sorry can't do links on the phone) if you are genuinely interested in where we come from on this.

Many thanks for all the supportive posts. So far Rumer's quality of life is good and as she's having surgery tomorrow (just g tube) I'm not sure how much I'll be around so thanks for the discussion

Good luck for surgery tmrw x

Hope everything goes well tomorrow

You couldn't have detected my DD's issues prenatally as she regressed at 2.10.

However she is,apart from her current toddler like phase of tantrums, the happiest kid I ever met.

She goes to special school (I know you didn't mean anything by mentioning mainstream there LEM but still, kids at special school are equally worthy of life).

Her disability is hard on me but so far it isn't hard on her.

And yes good luck with the surgery tomorrow and glad you didn't let Talkin''s crass post get you down.

Best wishes for surgery tomorrow

Gosh, no i didn't mean that at all Fanjo, im sorry if it came across that way. My meaning was that my friend was told her little boy would have severe life limiting disabilities. When actually his disabilities are there, they are by no means life limiting. Och, you know what i mean.

Hope surgery goes well. I'll be thinking of you both

LEM yes I totally know you didn't mean anything bad

I was just covering all bases

Best wishes for Rumer's op tomorrow, I'm so glad that you've been able to have so much more time with her so far than you were every told was possible. Long may it continue

Best wishes for the surgery.

Your baby is gorgeous!

I personally find lots of medical terminology offensive and outdated and I think you are right to challenge terminology you believe to be incorrect.

I did not appreciate being asked to check and sign that I was in surgery for an 'abortion' when i experienced a MMC of a very wanted baby.

I also don't appreciate people using terms such as 'defect' or 'abnormal' and found this upsetting in EVERY medical appointment that I had during pregnancy (even when said in a really kind way?). Even just hearing words like that used on the telly upsets me now.

Oh and I also didn't appreciate being told that "nobody would want a baby like mine" by one Doctor.

Oh Gizmo :( that's awful.

Gizmo How do you propose replacing 'defect'? I am not unsympathetic and I'm sorry for what you've been through, but it's such a basic word used to describe many medical, well, defects.

I mean, we talk about, for example, 'cardiac defects', to mean things like septal defects, pulmonary artery defects, and so on. I can't think how to replace use of 'defect'. Of course, there are synonyms but they will all begin to carry the negative connotation you are objecting to?