I think that Down Syndrome is a very misunderstood syndrome. The way it makes you look dominates how people think about you, without even knowing you.
I interact with someone online who has Down Syndrome. It really changed my understanding of it. He can articulate very well when writing, and has a deep passion and understanding on some topics we discuss (like music...). If he hadn't of told me he had Down Syndrome I never would have guessed.
This article points out the rather morbid fact that 90% of down syndrome pregnancies are aborted. I still remember the conversation with the obstetrician regarding my first child, who told us we should screen the pregnancy and implied we should abort if there were any major defects (including down syndrome). I guess this is standard practice, which is kind of sad, since those with Down Syndrome can live fulfilling lives.
> This article points out the rather morbid fact that 90% of down syndrome pregnancies are aborted. [...] I guess this is standard practice, which is kind of sad, since those with Down Syndrome can live fulfilling lives.
I get what you're saying when you mention living a fulfilling life, but there is an impact to others as well. A couple I know decided to have one last child late, and unfortunately had a Down Syndrome pregnancy. Abortion was out of the question for religious reasons. They took joy in the pregnancy, and approached it with lots of motivation. Early on, they got a lot out of the simple joys of raising their Down Syndrome child, which others in this discussion have referenced. However it became more of a problem over time. There is a spectrum of functionality for those afflicted with Down Syndrome and some children have the capability to be more independent, or more manageable, while others don't.
In this case, although things started off well, it became apparent that the child would never be functional enough to be independent in any way, despite lots of efforts and investment from the parents. The situation created large stresses and constraints on the family - the parents, the siblings, their friends, etc. It changed what activities they could hold as a family, what social functions they were invited to, where they could live, and so on. Ultimately it destroyed their marriage and has created a lot of complications for them now, in terms of taking care of their now adult child.
My exposure to this basically confirmed that I would choose abortion if faced with the same situation, as the burden created on others' lives is simply too much.
That 90% may move much closer to 100% with the wider availability of the maternal blood test screening for foetal trisonomies (branded “Harmony test” in the UK) which is supposedly very accurate.
My wife opted to have this test for two of her pregnancies at about 13 weeks, both negative.
It’s impossible to say what we would have done given a positive result. Everything I hear about the way such a diagnosis is handled by the medical profession suggests that expectant parents will be steered down the route of abortion.
My experience in Germany mirrors yours. Although you of course have the choice (not to take the test, not to act on the results), the process felt like it was leading inevitably down the path of aborting the pregnancy in case of a positive Harmony result confirmed by another test. I found the experience, including talking to relatives about the topic, quite unsettling.
I agree that that stat is unsettling, but I really can’t judge the people making this choice. It’s an impossibly hard situation to be put in, and you can’t be judgmental. Decisions like these are never easy, and never taken lightly by anyone.
I think though, as the article points out, doctors have a responsibility to properly educate about the life quality of down syndrome so parents can make an informed choice. Right now, standard medical practice seems to be to just recommend abortion without much information.
I always thought there was a certain tension between being against aborting babies with Downs Syndrome but being OK for healthy babies being aborted for lifestyle reasons.
[Not OP specifically, just something I have observed]
That is because what you call "lifestyle reasons" as if we talked about slight unimportant change in lifestyle are actually massively life changing limitations. With lifelong consequences you won't ever be able to avoid and oftentimes literally end of your life as you knew it.
It’s effectively genocide and quite damning on society. I don’t put it squarely on the parents because it is so difficult.
My neice has downs. Interactions with her are about the here and now. Joy and life. Fun and wit. Not plans and efficiency and production. Those with downs are modern day prophets for the rest of us to expose the soul-destroying utilitarian ethics of modern society... and we’re killing them!
How is it "damning on society"? Raising normal children is already a massive time commitment, and at the end you get a functioning adult that you don't have to take care of, and which can give you grand children. Why would anyone want a child that takes even more time and has to be taken care of for its entire life?
As the parent of a child with Down Syndrome who is also autistic, I can say it is wonderful experience. He brings us great joy and love, despite his unique needs. I couldn't imagine that anyone who met him thinks he doesn't deserve to exist.
My comment was in response to the question why would anyone want a child like that. There seems to be pressure to terminate pregnancies with Down Syndrome. Fear of the unknown drives the decision, and it is a non-controversial decision because society seems to expect it. Once you see past the disability and humanize them, it does seem cruel to terminate a pregnancy due to Down Syndrome. That said, I'm pro-choice and always support the right to choose.
I do. I have another son who does not have Down Syndrome.
Your question is difficult to answer. His condition is a part of who he is. If he didn't have Down Syndrome he would be a different person. In effect your question is do I wish I had a different son. The answer is no, despite the challenges.
It's really not a different question. Either way if my other son also had Down Syndrome, I would accept him and love him for who is. That's our job as parents, right? BTW, our odds of having our first son with Down Syndrome and autism were about 1 in a million (maybe higher). Our odds of having a second child with Down Syndrome were 1 in 100. That didn't stop us.
I don't mind answering questions about our experience. Hopefully this line of questions isn't trying to prove a point.
As a parent, it is terribly hard to imagine your child not being there. I suppose what I'm curious about is, knowing what it's like to raise a child with Down Syndrome and what it's like to raise a child without, if you hadn't had either child yet, or perhaps were to have a third child, would you have a preference, and if so how strong of a preference?
Every child is different and has unique challenges. All parents here can attest to that. Regardless of disabilities, there are emotional issues, sub-culture issues, etc.
The biggest challenge is the lack of community support. I live in the US, and disability services are the first thing cut when ever there is a budget cut. Most workers who choose to work in the support industry make little over minimum wage, for their entire careers. That means high turnover. That leaves a lot of care to the parents and extended family. So financially there are extra costs (e.g. paying a sitter, for an adult child), equipment, and planning for support after you are gone.
There is emotional stress, but you can probably imagine that. One of my peeves is how casually people throw around the R-word. Then act innocent that they didn't mean to be insulting.
So yes there are challenges. I wouldn't want my son to be anyone else though.
I'm in my 50s, my kids are in their 20s. I'm not looking to have anymore kids. :)
Mental deficiency does not make a culture or society. It's not sufficient to say they are a "group". It has to be a national, racial, religious, or ethnic group.
Famously, those with other ailments such as deafness or blindness have gone on to form their own subcultures. This of course never happened with the likes of Downs because they are not a "group" broadly and autonomously forming a culture. They are dependent on care, usually, and at the very least for a good portion of their lives.
You seem to think the risks of carrying a child knowing they will have Downs are irrelevant and ought to be borne by the parent. That's irresponsible and naive.
If it's performed as an abortion would that still be considered genocide? Isn't that implying that the fetus is a living person with all the rights accorded to them? That would seem to be going against the contemporary wisdom of abortion wrt women's rights.
> If it's performed as an abortion would that still be considered genocide?
People with Down's aren't a national, ethincal, racial, nor religious group so strictly speaking it doesn't count as genocide under international law. But it would meet less formal definitions.
Luckily individual women making a choice to have an abortion cannot be carrying out a campaign of genocide. But when a society pushes women in this direction by failing to provide support or by failing to provide accurate information that society is probably engaging in genocidal actions.
> Article 2 of the convention defines genocide as
> any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:
[...]
> (d) Imposing measures intended to prevent births within the group;
While the personhood and rights that the unborn have are hotly debated, the term genocide, as defined by the person who coined the term, points out that it doesn't mean the immediate murder of all people in that group:
>Generally speaking, genocide does not necessarily mean the immediate destruction of a nation, except when accomplished by mass killings of all members of a nation. It is intended rather to signify a coordinated plan of different actions aiming at the destruction of essential foundations of the life of national groups, with the aim of annihilating the groups themselves. The objectives of such a plan would be the disintegration of the political and social institutions, of culture, language, national feelings, religion, and the economic existence of national groups, and the destruction of the personal security, liberty, health, dignity, and even the lives of the individuals belonging to such groups
Yeah I hear what you're saying. However, I still don't think it would be considered genocide in the conventional sense because the woman is not being compelled to have an abortion, it is an individual choice.
Even if the percentage of women electing to have an abortion is high, they're not acting as a singular cohesive body with the collective goal to eliminate all children having Down syndrome.
How many children do you have? For each of ours, there is a strong push for early genetic testing from everyone, primary care, OBs, friends and family. For our first, they were flagged in an ultrasound and they asked whether we wanted to terminate (kiddo ended up without down's, even the Harmony test is only 80% accurate among high risk mothers). The manner in which the "choice" is presented is heavily biased at a systemic level.
It's on a spectrum. Some are utterly unable to take care of themselves. By going forth with a pregnancy, you take on the risk that outcome can be far worse than exemplified. Chromosomal deletion is one possibility. No one wants to take care of a vegetable, let alone roll the dice on a "milder" case of downs.
I interact with someone online who has Down Syndrome. It really changed my understanding of it. He can articulate very well when writing, and has a deep passion and understanding on some topics we discuss (like music...). If he hadn't of told me he had Down Syndrome I never would have guessed.
This article points out the rather morbid fact that 90% of down syndrome pregnancies are aborted. I still remember the conversation with the obstetrician regarding my first child, who told us we should screen the pregnancy and implied we should abort if there were any major defects (including down syndrome). I guess this is standard practice, which is kind of sad, since those with Down Syndrome can live fulfilling lives.