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?

Its a genetic disorder or chromosomal abnormality that has been there since the moment of conception, or very soon after.

So technically it's a conception defect surely? Birth defect harks back to the days when people didn't understand genetics to me. And as its caused by extra genetic material its not even really a defect, which suggests a lack of something.

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.

Yes, just to clarify as one of the more vocal advocates on this thread I definitely do not endorse the anti abortion infiltration of the DS community.

Even more technically, and accurately, it's a meiosis defect or failure as the extra chromosome 21 material is introduced during egg or sperm formation long before they ever come together to form an embryo and result in the birth of a baby.

I think the issue is defect. You're saying they're defective and I'm sure the parents and the people themselves very much disagree that they're defective in any way.

I've read the blind community having a similar argument with an organisation, I think it was to do with wanting to be able to screen for blindness in embryos. Their argument is that it suggests parents should be able to abort blind babies and it's not nice to think that people feel that way about you. Being autistic I get it, obviously not fully, but certainly the idea that something is wrong with me, being called defective is much worse I think.
So yeah I get it.

How?

It's named after John Langdon Down.

How is it offensive to miss out syndrome?

For you and the other posters unaware, here's a link: downsyndrome.ie/person-first-language-guidelines/

There are other international links that say the same.

About half way down the page, it's mentioned that using Downs as an abbreviation is no longer correct terminology. (DS can be used as an abbreviation). I've added the screenshot.

Similarly 'Downs' or Down's' with the apostrophe is incorrect. The person who identified the syndrome was not someone with DS. (So no apostrophe)

"You're saying they're defective and I'm sure the parents and the people themselves very much disagree that they're defective in any way."

Do they though?
Definition of defect: "an imperfection or abnormality that impairs quality, function, or utility"
Downs Syndrome does affect the person's health negatively doesn't it?

@x2boys

When people say that terminology is now out of date and offensive,who have they consulted with have they asked parents or carers what terminology they would prefer or the person themselves with the condition ( if they are able to give an opinion ) or do they just decide that it's offensive ,non of this helps my son .

Yes. See the links I shared, which is from the representative body, and is people-centred.

I think the issue is defect. You're saying they're defective and I'm sure the parents and the people themselves very much disagree that they're defective in any way.

Would they though? I have a heart defect. It doesn't me that I'm defective. Unless you believe that a person is their disability I can't see how you could come to the conclusion that calling something a birth defect means that the person themselves are defective?

Oh and the use of ‘Down’s’ isn’t offensive if it’s simply a shortening of Down’s Syndrome, FFS

Well, it's incorrect - as per link shared. No need for FFS, when a simple google search would have confirmed it.

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 grin)
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?).

I just think that parents should be able to choose whether to carry a pregnancy to full term when there is a disability regardless of what it is. If people with children who have Down Syndrome want to advocate for their individual child then absolutely but who the fuck is anyone to take away options for others?
I will advocate for my son til can’t anymore but make no mistake disability is exhausting, life changing and can be soul destroying. I hate that people romanticise it and the ‘ill love my baby no matter what’
Yes you will. Of course you will, but you may lose everything else in the process. Who is anyone to tel another human they must make that sacrifice

[quote seekinglondonlife]@Proudboomer I'm in the same boat, but do you not agree that by linguistic definition it is a defect? My ds's heart/brain is defective according to the definition. I obviously think he is amazing though.[/quote]
No I don’t see it as a defect. It is just a difference in genetics’. Who decides what is normal anyway?

@Grapewrath

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 grin) 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?).

I just think that parents should be able to choose whether to carry a pregnancy to full term when there is a disability regardless of what it is. If people with children who have Down Syndrome want to advocate for their individual child then absolutely but who the fuck is anyone to take away options for others?
I will advocate for my son til can’t anymore but make no mistake disability is exhausting, life changing and can be soul destroying. I hate that people romanticise it and the ‘ill love my baby no matter what’
Yes you will. Of course you will, but you may lose everything else in the process. Who is anyone to tel another human they must make that sacrifice

Completely agree

@EarringsandLipstick

Oh and the use of ‘Down’s’ isn’t offensive if it’s simply a shortening of Down’s Syndrome, FFS

Well, it's incorrect - as per link shared. No need for FFS, when a simple google search would have confirmed it.

Except that's for Ireland (and I know the US also use Down Syndrome).

In the UK the equivalent charity is called the Down's Syndrome Association.

WHO are not calling people with DS a defect, on World National Birth defect day they simply listed a few of the most common birth defects, with DS being one of them.
I need to clarify that I absolutely advocate for anyone's choice/decision in pregnancy, and when someone is alive I most certainly believe they should be given whatever intervention that is in their best interest.
My question is more along the lines of why is DS a more emotive disability/difference/condition than other ones.

I think it should be up to people who actually have DS to decide on the terminology used.

That's interesting @Legomania

Strange that UK is an outlier in this. On the site you mention I see they support World Down Syndrome Day so the accepted international norm, in the English language, is Down Syndrome.

I didn't see any use of 'Down's' on the website.

I think some issues around this are being clouded by the terms defect, differences and disabilities. For what it’s worth I don’t like the term defect, my dd has one of the worlds most rare and complex syndromes and is severely affected with profound and multiple physical and learning disabilities. She is different in every way, but not defective. The terms here can be varied in what individuals find upsetting or acceptable, but the bottom line for me is that unfortunately there is still a huge lack of understanding and tolerance from a big part of society, and that’s why I feel strongly that we do need to be aware of powerful words can be in basically educating people about other people. Whatever words we use won’t make my daughters syndrome any easier to live with both me and her, life is beyond hard. But it might help a bit if I don’t have to also worry that some people stare and see her as a bit of a freak. She isn’t- she’s just different. Disabled- yes. Defective-no. Some people just can’t see beyond it.

I have found found post on Facebook now and can see that most people are reacting to the term defect as suspected.
They are also responding to the wording of the post which refers to preventing birth defects and then listing Down Syndrome. The WHO have since edited the post.

I think of a defect as something that needs fixing, and crucially can be fixed. Learning disabilities, chromosomal and genetic disorders, neural pathway disorders etc cannot be fixed, that are human differences and cause varying degrees of being differently able. Some are life limiting, others are not but they aren't defects in my understanding of the word. I have sn autistic dd, she's not defective l, well perhaps in manners sometimes

Down Syndrome is a genetic disability or a genetic condition.
I agree that it's not technically correct to call Down Syndrome a birth defect. And defect is a harsh word. But people with disabilities aren't living in bodies that are simply different, are they? They are fully human and equal in every way. But being blind doesn't make you hear twice as well, Disabled people have to work harder to get through the day and that is to be respected.

It's a chromosomal disorder that manifests itself in many ways, including cardiac issues, learning disabilities and certain physical characteristics.

Not a birth defect.

Down Syndrome is used in the rest of the world; Down's Syndrome is used in the UK.

My question is more along the lines of why is DS a more emotive disability/difference/condition than other ones.

I think this is, at least in part, because the anti abortionists are politicising it - they are deliberately romanticising the condition.

Defect is just a very negative word. Not surprising that most people don't want to refer to their child as defective. It may be technically correct based on formal definitions but if that isn't how someone sees or wants to refer to their child - all the more power to them. The children are going to have enough struggles without being looked at by their parents as a defect or defective. And they would prefer that others not see or talk about their children that way either.

It's factually inaccurate to call something a birth defect when it's actually a chromosomal difference which has been their from very early pregnancy and has nothing whatsoever to do with the birth process - am suprised WHO have termed it such, it's just misleading, surely a birth defect is by definition a defect caused by the birthing process ??