To say that Downs syndrome is a birth defect?

[seekinglondonlife]

I'll start by saying that my dc3 has a birth defect (chromosomal) that means he is fairly disabled. It shares a lot of overlapping characteristics with DS (learning disabilities, cardiac problems, developmental delays etc) so I follow a lot of people on SM who have children with DS.
The WHO have included DS as a birth defect (alongside spina bifida, CHD) and there has been quite an uproar and "much disappointment at WHO". As a parent with a child with a birth defect I get the label hurts when it is written down like that, and my ds' disabilities are not his definition by any means. BUT, he still has a birth defect by definition, and no amount of flowery language is going to change his health problems and long term need for care.
I posted in AIBU for traffic, but it would be interesting to engage in discussion about why some people feel DS isn't a 'birth defect' but are fine with other birth diagnoses (for want of a better word) to be defects or disabilities?

@Grapewrath that's the thing, it seems as if DS is presented as something lovely and endearing to have, in a way that other chromosomal abnormalities aren't. Is it the stereotype that everyone with DS is very loving perhaps? (I have to admit that all of the babies that I follow with DS are exceptionally cute )
There was a documentary about Iceland having nobody with DS within their population (they seem to terminate all known conditions) and many were saying they were villains for wanting to eradicate DS. Why should we advocate for DS and not other conditions where the person can lead a full life too?).

A birth defect is not the same as a birth injury. You can't class a negligent doctor breaking a baby's arm, or a poor mite starved of oxygen because they waited too long and caused brain damage as birth defects- they were a perfectly healthy babies in the womb.

I think it depends of what the term is going to be used for. Is it to be used for a world wide health coding system or are they wanting to control how everybody talks about a particular disability?

It’s probably the word “ defect” that you ,as a loving parent , are taking against.

I think theres a concerted effort in disability activism to reframe most disabilities and difficulties as a difference rather than terms like defect, disability etc which are more loaded with negativity. Its to do with the social model of disability which frames the issue as a problem with society not the person.
I think it could be considered a defect to have an extra chromosome that disables rather than helps, but I can see why people are not keen on describing it that way too

[quote seekinglondonlife]@Grapewrath that's the thing, it seems as if DS is presented as something lovely and endearing to have, in a way that other chromosomal abnormalities aren't. Is it the stereotype that everyone with DS is very loving perhaps? (I have to admit that all of the babies that I follow with DS are exceptionally cute )
There was a documentary about Iceland having nobody with DS within their population (they seem to terminate all known conditions) and many were saying they were villains for wanting to eradicate DS. Why should we advocate for DS and not other conditions where the person can lead a full life too?).[/quote]
Babies with Down syndrome will one day be adults with Down syndrome , unfortunately like other children with Disabilities ,they can become less " cute" as they get older it becomes harder as a parent or carer as your child gets older as often people are less understanding of behaviour then a cute little toddler .

I think 'birth defect' is one of those medical terms that feels more negative than it's supposed to be - like a 'geriatric pregnancy'.

I suspect it's so emotive, because generally speaking, you want to avoid anything with a defect, and it therefore implies that given a choice, people wouldn't choose to have a child with DS. The language makes it into an implied personal attack/judgement.

@Branleuse

I think theres a concerted effort in disability activism to reframe most disabilities and difficulties as a difference rather than terms like defect, disability etc which are more loaded with negativity. Its to do with the social model of disability which frames the issue as a problem with society not the person. I think it could be considered a defect to have an extra chromosome that disables rather than helps, but I can see why people are not keen on describing it that way too

I personally hate difference ,it really minimizes my son's disabilities ,he is very much disabled .

@x2boys
"I personally hate difference ,it really minimizes my son's disabilities ,he is very much disabled ."

I agree, as a retired therapist, I hated the term "differently able and was glad it got canned. It seemed to be both rude and dismissive of people's reall struggles.

I don't like difference either, it doesn't sit right with me and the disabled activists I know wouldn'tsay they had a physical difference. .

I think there's a difference between a "defect" (if that's the term they're using) in one part of you vs your whole self. If a cleft lip is a birth defect then Mary who was born with a cleft lip has a birth defect, and her lip has it. And the rest of her hasn't any "defects". You can't narrow it down with someone with DS so it does sound more personal and offensive. I don't think many people can separate the person from DS but with many other birth defects they're a separate entity to the person and their personality etc. so maybe that's why parents of children with DS find it more offensivec

@Branleuse I think that might be it, but I don't see this with any condition other than DS and more recently autism. Ds has autism too (quite severely) and I had one therapist tell me "do not ever think autism is a disability!". I used to say this when he was younger, but for him it most certainly is now that he is older.

I think the use of difference/disability should be down to the individual. For example, some autistic people don't like to be called disabled and others very much feel it is important to. Where someone might not be able to indicate preference then it's fine for the people who care for them to choose.

A birth defect is something present when the baby is born, not something caused by their birth. I thought that was widely understood.

I think people conflate Defect with Defective - the condition with a value judgement.

It's like those people who get upset reading their medical chart of a miscarriage as 'spontaneous abortion' - ascribing a value judgement to a medical descriptor.

Especially when it's aboput our children, we get awfully prickly about terms even when they are neutral descriptors.

It’s always been classified as such in that you have to do the paperwork for the birth defect register, that’s been the case for decades.

I think birth defect just means present at birth/born with, rather than acquired after?

That’s exactly correct. That’s what birth defect means.

I would call Down Syndrome a congenital abnormality. I don't like the sound of "birth defect"

Why should we advocate for DS and not other conditions where the person can lead a full life too?)

Who do you think has been doing the advocating? It's us, the DS community and allies. Certainly not the government or society at large.

If you want that for your community, which I am fully supportive of, then mobilise.

I guess you could argue that we should have been advocating for all conditions but you have to remember that in the 80s and 90s when a lot of this activism was started people with Downs were all lumped together by education, health etc. I grew up surrounded by other people with downs, not just my brother. I guess the fact its a very visible disability helps that sense of community, I can see a person with Downs on the other side of the world and have an experience in common with them.

@KneadingKitty

I think the use of difference/disability should be down to the individual. For example, some autistic people don't like to be called disabled and others very much feel it is important to. Where someone might not be able to indicate preference then it's fine for the people who care for them to choose.

Absolutely it's up to the individual ,however to get a a diagnosis of autism you have to meet the criteria with the Triad of impairment,s which by definition is a disability ,however it's not up to me how to tell somebody else how they should feel but nobody else gets to decide my severely autistic child just has a difference either

My son has mosaic Down Syndrome. It most certainly isn’t a birth defect, he had Down Syndrome whilst he was growing in my womb.
Amongst the DS community that we are in it is not offensive to use the term Downs.
Peoples attitudes towards him have changed a lot as he’s got older, he was the most cutest, smiley and placid baby and toddler, he was admired and spoken to wherever he went. Now as a hairy and sometimes grumpy teenager he is mostly stared at, avoided or ignored.

@EarringsandLipstick

I think officially downs is a learning difficulty

The term 'downs' is not acceptable to use.

should it be Trisomy?

the word downs is very much used and understood

There was a documentary about Iceland having nobody with DS within their population (they seem to terminate all known conditions) and many were saying they were villains for wanting to eradicate DS.

By the way, this is bullshit. Of course there are people with DS in Iceland and not everyone chooses to terminate. What is true is that in some years nobody with DS is born but if you think about the number of births in Iceland, a country with a population of about 350,000, this should not be the big horrifying shock it was presented as.

DS is being heavily politicised by anti abortionists, hence the 'don't screen me out' campaign against NIPT and Heidi Crowter's case to amend the abortion act. Just found out there's a preliminary hearing this Tuesday (8th) to determine whether she can appeal against the high court ruling.

Thread from last year:

www.mumsnet.com/Talk/feminism/4289660-Late-term-abortion-high-court

oh i see @EarringsandLipstick, you have explained later that using downs is wrong and should be Down syndrome. understood

[quote seekinglondonlife]**@Branleuse* I think that might be it, but I don't see this with any condition other than DS and more recently autism. Ds has autism too (quite severely) and I had one therapist tell me "do not ever think autism is a disability!". I used to say this when he was younger, but for him* it most certainly is now that he is older.[/quote]
Yes. We are an autistic family so I feel like i can see it from both sides. I get annoyed by people who think its all just a difference and NT people are just opppressing us, but on a personal level I do try to look at the positives or at least look at it neutrally for the sake of my children. I dont want them to feel like they are defective. That would be a horrible way to frame our lives. Its complicated

My son has mosaic Down Syndrome. It most certainly isn’t a birth defect, he had Down Syndrome whilst he was growing in my womb.

I thought all DS babies developed it in the womb and not after birth? Can you get DS after birth? I thought that’s why women were offered screening because it happened in the womb, during foetal development. I’m confused!