American Influencers who terminated for T21.

[ScaredButUnavoidable]

Has everyone else seen all the hatred online for the social media influencers who have decided to terminate a pregnancy due to a diagnosis of T21?

I have no idea who the couple are but today my social media feed is full of really abhorrent articles, videos and posts aimed at them (and about termination in general) and I’m just horrified.

Unsurprisingly they are in America, but even so.

I’m assuming the couple have been streaming videos about the pregnancy since the start and this announcement seems to have sparked absolute outrage.

Ok, the Influencers must have realised that some people would be upset by their decision, but at the same time, those same people must understand that although couples choose to have terminations based on medical conditions it’s still usually a very difficult and upsetting decision for them to make.

Has anyone else seen it?
I’m deleting as much of it as I can from my timeline but it’s constant.
They are even getting death threats.

It’s like a witch-hunt, it’s disgusting 😢

It’s just a shame those who are so keen to abuse this family for having to make an awful choice aren’t putting the same energy into better services for disabled people.

Raising a disabled child is tough. The toughest bit is the having to fight for every little bit of help and support they need.

Absolutely. More women would continue pregnancies with disabled children if they knew the support would be there.

It’s absolutely awful.

Yeah, we just shouldn’t talk about breast cancer. There are charities who deal with that if you want support. Or mental illness, or menopause, or miscarriage or….

Just like we never used to, and women suffered alone.

Maybe some would? But are there any stats on that? Because I know I wouldn't.

As for these influencers...well, I don't like the whole influencer lifestyle, and I think they should've just lied, honestly - but I can't fault them for knowing that they wouldn't cope well with a disabled child, and terminating.

I disagree that opening up every element of one’s life to the scrutiny of online randos is some sort of act of radical social good.

I am telling you I have actually been in this situation and I couldn’t have given a fig what influencers had to say about it. It’s up to them of course if they want to share. But I don’t believe it’s doing society any good and I don’t believe it’s doing them any good.

There are so many more meaningful ways that we are moving towards normalising previously taboo elements of the female experience.

America is very anti abortion anything in some states since the Supreme Court overruled legislation allowing it. Each state decides for itself.
Thirteen states virtually ban it altogether. It is not the same as the UK. Yet.

No idea who this is about, but influencers in genera literally put their lives online, so it’s not really a surprise when people have opinions and judgements on the things they do, even something like this.

I know a couple that are fairly big on SM as the live locally to us. They put their relationship and their children’s personal moments on it and then moan when people have opinions, say their children’s lives should be private etc. Everything is money and attention to them though, even the hard tings they go through, they see the engagement and cash it will bring them.

People judge, we know that, and if you put your life online, you’ll get more of that.

I have sympathy for them facing the situation they are, but none for the consequences of them choosing to put it out there to the world. No doubt when they do have children, the child will be online from birth to be monetised. These types are people are terrible.

Well the support has never been there, so I don’t see how there could be meaningful stats. Any survey could only ask people what they imagine they would do in a situation where a) they were pregnant with and disabled child and b) there was excellent state support in place for disabled children. And what people imagine is always very different to actually being in the situation.

Down Syndrome is widely misrepresented and misunderstood in the popular imagination, and that probably goes double for followers of social media influencers I'm afraid.

Through my work I know a lot of individuals with trisomy 21, and they are wildly different from one another. One of the people who has been most important in my life had trisomy 21 - she died (age 48) a few years ago and I still struggle with that. She was one of the most honest, charming, loyal , authentic and also frustrating people I've ever had the pleasure of knowing, and I miss her.

However I have also worked with non speaking, Autistic, doubly incontinent, physically unwell adolescents with trisomy 21 who have had almost no quality of life despite loving family and dedicated care teams.

There are three ways Down Syndrome happens, and those with the mosaic form in which not every cell has the extra copy of the chromosome are often the least negatively impacted and are the fairly articulate people seen talking on social media or even working as speakers and advocates. Obviously anti choice/ prolifers focus on the highest "functioning" individuals when talking about Downs.

Most people with Down Syndrome have non disjunction in which every cell has three copies of chromosome 21. Even within this form these is huge variety, with some individuals having a good quality of life and others having more challenges than anyone should have to deal with. With this form around 65% have heart defects as part of the syndrome. The chances of survival to age 5 are only around 60-70% for babies born alive with trisomy and a heart defect. Those born with heart and (also common) respiratory issues often spend much of their first year in hospital, and of course a horribly high number don't survive.

The extremely high rate of leukemia (around twenty times higher than in the general population) in children and young adults with Downs is also not much discussed by those trying to present a trisomy 21 pregnancy solely in a positive light.

Respiratory issues and autoimmune conditions often significantly reduce quality of life in adulthood, and early onset dementia is very common.

Autism co-occurrs with Downs at a very high rate (up to 40% of individuals with trisomy 21 are Autistic), and those dealing with both generally have extremely challenging lives, because often the coexistence of the conditions means the individual doesn't have the coping/ compensation techniques an individual with one but without the other would use.

It's not all sunshine and unicorns.

Why is it hurtful to people with children who have Down Syndrome, though?

As a mother, I'm not hurt when women have abortions because they fell pregnant accidentally and don't want a child. What I might be happy with isn't always what other people want.

Why share it, especially in the US, and especially in the current climate? They chose to share something so personal for clicks, they must have expected a reaction. If they are "influences" they would not be exactly naïve in understanding how all of this works? I would imagine they thought the views and comments (even negative) would be worth it?

I have sympathy for people facing this kind of decision and would never judge either way, but I despise people who would post something so traumatic online as a money making opportunity.

Why are they telling people? Termination is a private choice and nothing to do with anyone else

Obviously because they want or feel they need to.

No one's making them and it's a valid choice to make, why shouldn't they go public if they choose to?

💰

It is a private choice but if we say nobody can talk about that choice then it becomes even more of a taboo than it already is. People should be able to talk about their own choices without receiving abuse for that.

sadly in the age of internet more and more people seem to be forgetting you can disagree with someone without abusing them

it is hurtful because it reinforces the narrative that DS people are fundamentally not worth a chance at life.Many live good and v happy lives but the whole statement and sentiment behind it is saying that they are not of equal value to children without the condition. They are less than and can be disposed of freely as a result.
His statement alone is tone deaf basically concluding by saying it will take time to get over it but they are excited at the thought of trying again in the future with hopefully a better outcome. V insensitive to parents and children with DS alike.

I saw a post written by a parent of a child who has DS. I can understand why those who have loved ones with DS would have found their announcement upsetting. And may wish to present a counter view of life in a family with someone who has DS. But I wholeheartedly believe in a woman's bodily autonomy and a safe and legal termination is a far better option than forced birth. The mass outrage is upsetting. Though it does bring home the point that sharing your whole life online may not be the wisest thing to do.

People forget DS is a spectrum. They’re not all happy-but- slightly intellectually challenged, but functional with assistance.

some have very severe cardiac and other abnormalities. That may not even be compatible with life, or they could be facing a lifetime of hospitals and surgeries. Early onset dementia is common.

they have every right to terminate if they don’t want their baby to suffer the severe effects of DS. Or even if they’re at the less severe end, what happens after the parents die? They can’t live alone, and social care in the US is awful- you’ve also got to factor in the cost of healthcare in the US, of paid respite care etc, that we in the UK would not have to think about.

what I don’t get is all the holier than thou anecdotes- they told me my child was at risk of down, but they’re perfectly healthy. As if the dr’s, chromosome analysis and ultrasounds can be wrong.

this attitude that a baby should be born regardless of the suffering it may experience is just wrong imo.

With usa though there also could have been a lot of costly healthcare (heart issues) which they may not have insurance for. Even giving birth can be expensive.

Then likely dealing with sen systems or schools.

If it had been UK realistically it maybe hard for both parents to work FT.

I’m not sure why they were so honest.

I’ve seen lots online from people basically saying DS now can live totally normal lives now which is also not true. There is so much misunderstanding about it. No one knows how capable your child will be, I saw someone posting a girl with DS who had gotten a degree, she isn’t representative tbough of most peoples experience.
DH had an aunt who lived to a really good age but she was passed around relatives before she finally went into care, which was the best thing to happen to her. She was doubly incontinent her whole life, couldn’t write her name, could not be left alone. The other aunt who looked after her had her health totally ruined and was absent in her own children’s lives. Romanticising what it’s like really helps no one.

Great post. I’m interested to know where the “up to 40% also have autism” stat comes from, though.

I’ve just started a thread on this where someone else linked back here. I think the response they are receiving is disgusting. So many people chiming in with photos and speeches about their own Down syndrome children or relatives…look it isn’t a competition. Some people are cut out for that and others aren’t. Not to mention family support and other factors. It’s nobody else’s place to comment especially with such harsh judgement, vitriol and death threats. It’s a depressing world we live in.

I’m not sure this is a fair representation of what they have actually said really? They were speaking about their own thoughts and their own situation for their own child, it is hard to hear for those parents who have children with DS and while they have made a decision I don’t think I would have made personally I can’t disagree with what they have said- nobody hopes their child will have DS, yes some do live good and happy lives but some don’t, not everyone would choose that and that’s okay.

More to the point, any and all kinds of attention can be monetised, because as this thread demonstrates people will click on a bit of juicy gossip and be served ads. And then be served more trash.

You can change the algorithm OP, just start searching for more wholesome stuff, or better still nothing at all.