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What is it about disability that scares everyone so much?

(796 Posts)
sarah293 Fri 22-May-09 20:21:07

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FrannyandZooey Fri 22-May-09 20:24:10

the unknown? thinking that you won't be able to cope? worrying that you might not love the baby? or that the sadness and worry will be too much for you?

i am just speculating
i avoided antenatal testing as i did not want to deal with difficult choices

lisad123 Fri 22-May-09 20:26:29

i think thats a hard one to answer. I guess we all have things we feel able to deal with and those we dont. We cant judge others, its not possible to know why people do the things they do.

thisisyesterday Fri 22-May-09 20:27:22

i did have antenatal testing, although i felt very strongly that I wouldn't have terminated regardless. but I guess i'd have liked to have time to come to terms with it before birth (assuming it could be picked up on tests)

what scares me? that I wouldn't be able to cope basically. that I might resent my baby?? (i am guessing that you prob don't, but it's still a fear)
other people pitying me, which is a crap reason to be scared

silverfrog Fri 22-May-09 20:29:33

I can understand scared (of the unknown)

I can understand worry (of not coping etc)

I can understand fear (of not coping, of perhaps not being able to love the baby etc)

I cannotunderstand a person changing their mind from wanted baby to unwanted baby.

But that is maybe because I would never do so, although I am familiar with all the fears/worries/terror

psychomum5 Fri 22-May-09 20:29:38

it is not that a wanted baby turns 'unwanted'.

tis more the confidence in yourself that you would be the right mummy for the baby coming to you.

I know (knew) when pregnant that I could parent an NT child. I was trained as a nursery nurse, I knew how to care for children. but never in any of my training, or upbringing, was I told how to care for a child with disabilities, so of course you would be scared if faced with the prospect of it.

the difference is, that once your baby comes, you have bonded so completely and deeply (even if you think you haven;t, I honestly think that face with the unthinkable, you would find you have), that your baby is your baby, and you just step up and cope.

I know that I never signed up for the ride that I have, but I get on with it because, quite simply, these children are mine and are mine for a reason.

doesn;t stop me having days of terror thowink!

LeninGrad Fri 22-May-09 20:29:50

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RuthChan Fri 22-May-09 20:31:47

For many people I think it is the fear of the unknown. Most people have limited direct experience or knowledge of disabled people and are unclear about what standard of life and/or prospects a disabled child might have. There is also the fear of the added responsibility it might bring. The possible extra burden of care and the possibility of life-long care. (What would happen if the severely disabled child outlives the parent/care giver?) However, for many people I think it's to do with wanting the very very best for their child. If the child starts off life with a disability, they are starting with a disadvantage that may make it difficult or impossible for them to forfill the same potential as a non-disabled child. Many people don't know much about life with a disabled family member and simply fear the worst.

sarah293 Fri 22-May-09 20:32:37

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silverfrog Fri 22-May-09 20:33:25

thisisyesterday - the fear of other people pitying you is a large one, and not at all crap.

It is the one thing guaranteed to make my blood boil. To me, dd1 is just dd1. She is also disabled, but I didn't know any different (before I had dd2), and she is the same girl she has always been. I hate people pitying me for having a disabled child - I had someone say to me last week (we were on holiday with a huge group of people) that "whatever difficulties god gave you with dd1, he has more than made up for it with dd2" (dd2 is a precocious little madam bright little girl).

how I didn't hit him I'll never know - the presumption that dd1 can bring no joy only difficulties really hurts.

Bucharest Fri 22-May-09 20:34:11

I don't think they do, do they Riven? (turn into unwanted babies)
I had an amnio, (I think we've been on amnio threads together) because I needed to know....before I had it, I was totally unmaternal and thought that were the test to show anything "abnormal" then I would have no hesitation about tx. During the amnio itself, seeing a baby for the first time, rather than the wee wiggly blobby thing of the earlier scans, I found that maternal instinct- there and then, and knew that nothing- no not-what-I-expected result would make me tx. So, knowing now about the sea change I went through back then, I'd still have another amnio, but maybe because I'm an impatient worrywort who would want to know what the future was going to hold, rather than someone who wanted to change that future...(IYSWIM?)
I don't actually know of many people who've had adverse antenatal test results and then gone on to tx, unless the baby's condition was incompatible with life and they wouldn't have survived anyway.

sarah293 Fri 22-May-09 20:35:24

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LeninGrad Fri 22-May-09 20:35:54

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thisisyesterday Fri 22-May-09 20:39:00

i would hope that is the case Riven.
it's sad how few disabled people are in the public eye, on soaps and stuff like that. and when they are there is a big deal made out of it instead of them just being like any other character.

sliverfrog- i am shock that people come out with stuff like that. am surprised you didn't wallop him too.

i thought of another thing that prob scares people too though, and that is what life will be like for their child.
i guess if you have no experience of children/adults with disabilities then you could scare yourself silly worrying that they would end up having an horrendous life and convince yourself that it would be better off not to have them???
i don't know.

expatinscotland Fri 22-May-09 20:39:02

tis more the confidence in yourself that you would be the right mummy for the baby coming to you.

then, if that's the case, why have children at all?

seriously, i wonder that, namely because i've always been the type of person who never lived life thinking it was all guaranteed.

in fact, my very first exposure to extreme disability in an adult was via one of my two best friends in the world.

for years, i didn't know she had 4 brothers, not just 3.

until she finally invited me to a big family gathering at Thanksgiving because i didn't have the next day off and therefore couldn't go home for it.

her other brother was there.

at age 44, he has the mental capacity of a 3-year-old.

he was born 'normal', however. he had a totally 'normal' life until he was 19.

he was queued up to get into a nightclub with his girlfriend when a person who was angry about not having been let into the club earlier drove his car through the queue, killing his girlfriend and two others and brain-damaging Michael.

what then? get rid of him? he's no longer the son you wanted?

'the difference is, that once your baby comes, you have bonded so completely and deeply (even if you think you haven;t, I honestly think that face with the unthinkable, you would find you have), that your baby is your baby, and you just step up and cope.'

as someone who has had severe PND 3 times now, i can't and don't buy that.

i don't.

if you're so depressed that you can't accept the child that's coming to you, then DON'T GET PREGNANT AGAIN.

failures of contraception, my ass. i can think of two other posters on here who had such bad PND they never had other children.

get sterilised and he gets the snip. use the coil AND condoms.

etc., etc.

yes, that's harsh.

so's life.

Bucharest Fri 22-May-09 20:39:40

That's outrageous Silverfrog...I would have wanted to thump him too...
Riven- your second question- yes I think things will change....my next door neighbour has a severely disabled son (he's about 35 now) and she has spent her life hiding him away (she was a teacher, gave up her job to be his carer) they go on holiday at odd times and only ever in self-catering because she "doesn't want David upsetting other people". The sad thing is that if David had been born 20 yrs later, he'd have gone to a mainstream school and she wouldn't have had to tussle always with this love, and yet obvious embarassment that she has to feel for other people....When I had dd she wouldn't let him come round and see her because she didn't want him frightening her etc.....I told her that it really wasn't like that anymore but I suppose she's of another generation....sad

lisad123 Fri 22-May-09 20:43:14

I think thats a bit of an unfair statemtn that because someone chooses to tx, that that means the child wasnt wanted. What if that child was never going to breath? no going to live for more than an hour?
I dont agree with tx, for my own beliefs but i dont think its fair to judge others so negatively when you dont know them at all. You might not have tx your dd Riven but you cant tell me it didnt scarce the hell out of you at times and how hard it is somedays. Maybe someone doesnt feel able to cope with that!

And no I dont think seeing more disabled children/people would help. I mean its not like we lock people up those days!

RuthChan Fri 22-May-09 20:43:49

I think some people might terminate for the baby's sake as much as for their own. Going on the basis that they'd rather not bring a child into the world knowing that the child might suffer more than absolutely necessary. It might not be so much that the child itself is unwanted...???

sarah293 Fri 22-May-09 20:44:57

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expatinscotland Fri 22-May-09 20:44:59

'What if that child was never going to breath? no going to live for more than an hour?'

Now I can't say definitively, but knowing Riven, I don't think she's talking about disabilities that are incompatible with life.

LeninGrad Fri 22-May-09 20:45:00

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smackapacka Fri 22-May-09 20:45:16

I think for some people it's the worry about what will happen when they can no longer look after their child - perhaps becuase of old age/health issues. The fear of what would happen could be a problem.

sarah293 Fri 22-May-09 20:45:38

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psychomum5 Fri 22-May-09 20:47:25

expat, you have children because you want them. normally the thought of a possible disabled one doesn;t even come into the thought process of planning for a baby. IME you think baby - and picture a mini-me/mine-DP/H (IYGWIM). that is why you have a child surely. (well, in the main, bar unplanned ones obviously).

and of course you cannot factor late disabilities into this thread. I think riven was talking about falling pregnant, having tests, and then termintating if yoiu find out that your 'wanted' baby has a disability. the case you cite regarding your friend really doesn;t count here (but it is so sad).

and as for PND, and the steppng up..............I am so very sorry if I offend anyone on that regard with any of my statements. PND has never affected me, so I have been extra-ordinarly lucky in that regard. but I have had children with medical issues, and the ensuing guilt from that, so I do have some exprerience with the statement of 'stepping up and coping'.

I think that I talk from my own perspective. and I think that you do toowink

sarah293 Fri 22-May-09 20:47:54

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