The Last Children of Down Syndrome
theatlantic.com
theatlantic.com
I would be more surprised if this were not true. It's not very PC to say, but quite simply being different is not inherently a moral good. Downs Syndrome in particular is more controversial, because people who have this disorder typically are happy in their lives. I've spent a not insignificant part of my life working with teenagers and adults with Downs Syndrome as a volunteer, and all of the people I've worked with have been cheerful and generally seem to have a high enjoyment factor in their lives. On the flip side, all of them required life-long assistance and care, never able to function completely independently, and lacking in almost all other meaningful quality of life factors.
It is entirely possible, without any dissonance whatsoever, to respect the autonomy and wonder of human life and the rights of people with disabilities, while also understanding that having children with debilitating permanent disabilities can be a heartbreaking exercise that drains you emotionally, mentally, and physically. Nobody reasonable wishes for their child to suffer from such a disability, so the moral implications of the shift towards prenatal screening and following abortion are more about the abortion than the rest of the conversation. Denmark, in particular, has a very open social view towards abortion, so the fact that abortion rates are so high when negative screening occurs is unsurprising. I'm sure the result would differ in other countries in proportion roughly to their social views on abortion.
I have a daughter with Down's, and I agree with what you've said here. I love my daughter and would lay down my life for her in an instant, but of course that doesn't mean I'd glad she has Down's and all the related health issues that can go with it.
> On the flip side, all of them required life-long assistance and care, never able to function completely independently, and lacking in almost all other meaningful quality of life factors.
This paragraph did surprise me though. Attitudes towards Down's have changed a lot in the past couple of decades, and at least in most of Europe, it's not uncommon for children with Down's to get a mainstream education and in adulthood for many to live (largely) independently. The level of intellectual impairment and physical and mental illnesses does vary a lot however, and undoubtedly some people will need life-long care regardless of the opportunities available to them.
Also financially. The level of care required isn't something that all people can afford.
What are these?
I think many people don't understand the depth of that statement, "living independently" isn't just a matter of financial independence. Certainly there is a place where society could help to fund the living expenses of the severely disabled. What I mean is that many people with Downs Syndrome are unable to perform basic tasks of life without assistance, such as maintaining their living space, cooking for themselves, being able to get to a doctor's appointment on time, being able to pay bills. Note, I don't mean forgetting to pay bills, which can be resolved through assistive technology, I mean being unable to follow the process to actually make a payment.
The life expectancy of people with Downs Syndrome has become quite good, and is around 60 years of age now, and yet for many of these people they will never know a moment of true independence and agency in their entire lives. They will need a permanent, likely live-in, caretaker from birth until death, long after their parents have passed away.
One unfortunate reality is a prenatal test can't tell you how severe the disorder might be. Your child-to-be could end up being one of the kids with Downs Syndrome who effectively has some physical abnormalities which can be accommodated and is a little slower at learning, but could otherwise graduate college and live a normal life. Or they could end up being one of the many children with Downs Syndrome that suffers from a deeper intellectual disability. IQ is one of those things that's mostly meaningless, but on the extremes it matters. The average IQ for adults with Downs Syndrome is 50, meaning that for most people with this disorder they will never get beyond the intellectual capacities of a small child. Some, unfortunately, are mostly non-verbal and unable to carry on conversation.
I don't think I should be any more specific than that, because it wouldn't be fair to the privacy of the people I've volunteered with. If you're legitimately curious, I'd encourage you to just search online. There's a lot of information about Downs Syndrome care out there.
Here in Norway genetic counselling is offered if the mother to be is above a certain age (sorry can't remember the number). So my wife and I had sessions with a genetic counsellor who explained the statistics related to birth defects. The decision is of course entirely up to the mother to be, and her partner, the counsellor in my experience is very careful not to sensationalise anything and was very neutral.
The counselling and tests are provided early enough that an abortion can be provided at low risk to the mother and before the foetus is viable.
We’ve essentially only had a few decades when it was not possible to identify these conditions in the womb and society was able and willing to support these individuals and allow them to live on.
Realistically in the past these children would’ve been killed by their parents either directly or through abandonment and those who weren’t often didn’t survive through adulthood especially once their parents have passed.
Down and autism today seems so much more common simply because these individuals get the chance to live to and through adulthood.
These conditions don’t only affect people’s mental abilities they have a plethora of other health issues too.
75% of people with Down syndrome that die die from respiratory and cardiovascular illnesses as they suffer from immune system issues and frequent inflammation, with the current pandemic a lot of them have died because if they do get infected they are severely affected.
https://err.ersjournals.com/content/26/143/160098
Before modern medicine and the flu jab many of them wouldn’t survive a harsh flu season...
Heck before we knew what Down syndrome was most of them probably perished as infants from infections that healthy individuals would just shrug off.
It's worth noting that, to many people, someone that isn't born yet isn't a "who" at all yet. That is, in my opinion, why we see such a large gap in opinion between "pro life" and "pro choice"; (many of) the former think of it as killing, (many of) the later don't see the unborn as a distinct life, just another part of the mother. That disconnect leads to a lot of talking past each other.
The box was opened 40 years ago at least, as a fetus I was screened due to a down syndrome older sister.
> This is far from a cure to genetic diseases it is removal of diseased individuals from the population
100% of down syndrome men and 30-50% of women are infertile. Throw in dating challenges and issue regarding consent and theses genes aren't going to last long anyway.
I don't think "we should decrease the number of people born homosexual" is a morally defensible position, but decreasing incidence of Down Syndrome, or autism, or Fetal Alcohol Syndrome, are absolutely morally defensible positions, and in fact, are regularly done -- people everywhere socially discourage pregnant mothers from drinking alcohol, for example, and I don't think the discouraging third-parties are the ones who are in the wrong in that situation.
I think having a child AT ALL, regardless of any other concerns, is an individual decision that should be made by mature, capable adults. I don't think it's necessarily a "morally defensible position" to have a third kid when you're struggling to take care of the previous two just because you belong to a religion that thinks prophylactics are immoral, and I would never, for example, judge a potential parent who decided to terminate a pregnancy because they were told it is unlikely their child will be born alive, and even if it is, would be unlikely to live for long.
Nowhere did I claim that it is reasonable to "judge a potential parent who decided to terminate a pregnancy because they were told it is unlikely their child will be born alive" (in fact, I'm Polish and am horrified at the new law recently passed in the country in which I was born, which specifically intends to do away with this specific act).
I think it's fine if you can't support another kid because you can't support another kid. I think it's fine if your kid won't live because your kid won't live.
But people with Down Syndrome and autism do live. And I think we should strongly consider the morality of the situation before going down that road. If someone is already struggling enough as it is keeping their lives together and finds out that this is the case, I would at least say it's more defensible than otherwise, because it is indeed harder to provide for some kids. But all kids are hard to provide for in their own way, and perhaps that person shouldn't be having kids anyway if that's the case. After all, we can't ever test for everything; it's entirely possible still to have a kid with something that can't be tested.
And people do discourage pregnant mothers from drinking, because that's an easy step to take to ensure higher chances of a happy and healthy baby. It's a false equivalence to compare that to terminating a potential life.
I won't judge people for their decisions. They have their reasons for doing what they'll do. And I'm absolutely unabashedly pro-choice. And of course I would have a hard time dealing with hearing that my kid will end up having Downs or whatever. But I think there is an aspect of morality to consider here, and the plain-and-simple "we should decrease the number of people born with Down Syndrome", presented without exception (as you put it, "absolutely"), does not fit my view. It's too close to eugenics for my taste.
Why would this be different than planed parenthood?
I'm also not following that we should draw the line here just because it can be missused when you draw the line further away.
I would even argue, that it is our duty to do tests as we have the means and therefore the responsibility to do so. We do know that nature is not perfect. We can't control everything before like the pill and everything while it grows (supplements, no work etc.) and after birth by helping babies which came out to early or operations etc.
Why would we control everything but not this specific aspect?
The general notion quite globally is, that an abortion before 3month is ethical okay for us as a society and this timeframe was not choosen through some random events. It probably evolved.
Those are organizations in charge of the trolley lever. How about putting the would-be parents in charge and keeping the organizations out?
Though slightly more ethical from my point of view would be gene-editing to remove those defects, instead of just terminating the fetus.
Edit: Also I'm not talking about down syndrome specifically. There's a long list of genetic defects that modern medicine can correct for and thus removes evolutionary pressure (bad eyesight, allergies, etc.)
https://www.youtube.com/watch?v=lP1cCjBkWZU
The doctor's "best of you" argument ... it's hard for that not to be appealing.
It doesn't make me special or a more valuable individual that i have sleeping issues and nerve issues.
I think there's actually some legit questions about if we tailor folks to be X efficient or manage their potential and who they were made to be... that might have a profound impact on happiness and how we see ourselves, what freedoms we are allowed and etc.
While i like that movie very much, he still got on a spaceship having much worse physical abilities than all the others of his crew.
Also in this specific topic, i'm not talking about a human who is able to overcome most/all of his obstacles given at birth. I'm talking about me and all other humans who are not able to do so.
I would also argue that on an ethical level, you would require to make sure that every new human being has the best chance our society can provide for him/her. Like if technology is so far advanced, that you can just scan an embryo, you see why it would become much smaller or way too tall which would lead to medical issues and you could fix it with a press of a button, you would need to do it.
I would argue that not doing this, is the same thing as denying a preterm baby an incubator.
And in doing so? Replace those that can't?
After that, of course not.
Citation needed...
A lot of autosomal recessive genetic disease is a result of humans reproducing within their in-group, making the likelihood of two carriers of the same variant having offspring with that expressed variant. BRCA1 / BRCA2 in the Ashkenazi Jewish population are a common example. Nothing about medical genetic testing will directly cause more genetic defects.
Why?
Unless the Down Syndrome patients themselves have children, then there wouldn't be an evolutionary impact.
Homosapiens are a result of chromosomal fusion, so I would approach the claim of "accruing defects" with great skepticism. Nature is still selecting as evidence by inflicting a high miscarriage & infertility rate.
https://www.ndss.org/resources/sexuality/
https://www.merckmanuals.com/home/children-s-health-issues/c...
That said, it is definitely immoral to forcibly prevent another human from having a child. Any debate on morality must focus on the decision the individual themselves must make.
That said, you can have mosaic aneuploidy (just some cells are affected), in that case, your life is likely to be more typical.
It's seems intuitive to me that as we are able to solve genetic defects with modern medicine, we'd begin seeing more and more of them. I imagine even bad teeth, or poor eyesight would have greatly reduced one's likelihood of surviving and reproducing in our not so distant evolutionary past, let alone something like Type 1 Diabetes, or a chronic heart condition.
That of course is just speculation though. Does anyone know of any studies indicating one way or the other? My quick search wasn't able to turn anything up.
Is there any evidence that this is actually the case?
Opinion having read some eugenics books. The authors completely conflate developmental disorders with generic ones. And they also way over state the true amount of genetic diversity.
Just because before there was no way to check/filter, did not guarantee that child would have a chance to reproduce.
The removal or inclusion of genetic defects usually stops if you can't reproduce and ends the family line with that descendent full stop.
This despite being a population that largely skews young, educated, healthy, high earning, highly sought after. We hold the power to insist that ours are the "Good Values". We are the beautiful people Marlyn Manson sung about.
And yet, a set of people who are largely unappreciative of the value of their own lives, are passing judgement the lives of the disabled.
Why do you think their lives aren't worth living?
Read the comments carefully
" Are you offering to pay for the extra millions in lifetime care and need for those children"
Where in my comment do I suggest that I wouldn't support the Billions (with a B in the US, you're off by three orders of mag) needed? Yes. I believe that a healthy, just society that has any semblance of a future has a moral obligation towards its needy.
Question. Where does your prejudice (i.e. pre-judging) that I wouldn't support extra Billions come from?
My abortion "policy" has been that it should be illegal to knowingly put an unborn fetus in jeopardy (unless the mother's life is at risk of course) as soon as the pregnancy is known beyond reasonable doubt. I can't imagine any other policy that doesn't dance with eugenics.
I think that the government's prerogative should be facilitating adoption for the baby and mitigating the "unavoidable" inequity to the mother biology has put upon her.
I understand many disagree with the above, I only ask that you keep an open mind as I also try to do about one of the trickiest moral quandaries in the present age.
Also, maybe i agree on principle that abortion should be a terrible choice (i've have not thought this through yet), but a lot of my friends or close family are educators/youth counselors (i have been one myself in another life) and even with a big social security net (unlike the US), some lives are just so unbelievably sad i sometime think we should tests the parent before allowing them to have a child. I'm joking, but some days, not really.
To put the pro-life choice into perspective, of the 4 girls present in the "foyer" i was working at ten years ago (google translate give me reception center or youth club, its an orphanage for 11yo+), the only one still alive was blowing guys in the toilets since she was 12. At least she was proactive and asked money for it. The other 3 died, one suicide at 14, the other two "accident" between 17 and 19 yo (they did not leave a note). I only have new from one of the 30 guys i was trying to help at the time, he is still living in the street at 23yo, my mother just got him to do the paperwork to get a social security card and taught him how to use the formation center locals to cook for himself, so i guess he is making steps, but he was one of those we had hope for when he was 14, so knowing he is in the street since he is 18 make me feel like a failure.
I'm pretty sure nobody really wants to know those exist, know their past, their mothers, fathers or stepfathers, but still, they exist. I can't be pro-life when i've seen them suffer, seen them kill themselves, either literally or with drugs. Or not being able to live at all. I've seen a boy with no autism, aged 6, act like a 3yo around noon and bedtime and having a lot of issue with urinating and defecating (i was specialized 3-6). Asked the director why. If this kid manage to pass the mental trauma his father inflicted him, the physical damages will stay with him for the rest of his life. Some people should never, ever be parents. The killing of foetus is inconsequential until we've fixed how we take care of our children. Or maybe sterilizing people is the way to go.
There's nothing to be ashamed of here.
I've seen several families destroyed by the challenges involved in raising children with special needs, or rare diseases.
Having a nuero/genetically-typical child is a challenging full time job. Add in the prospect of it being a full triple-time job for their entire life, whether that's six years or 130 years and it's not likely to be remotely possible for the vast majority of families to sustain. Between the mandatory extra time commitments, lost pay, increased expenses, and the conversation changes. How could it not?
Anyone who has children runs that risk. And society needs children, unless you believe the human race should let itself die out.
Like you said, there's nothing to be ashamed of here.
I'm curious about this. I didn't realize that the condition could go undiagnosed long after birth!
In our case, somehow none of the health professionals noticed or said anything (yep, we seriously found out later that at least 3 of them suspected and said nothing - because it "wasn't within their remit"). Typical Down's facial features are not quite as prominent in our daughter, and developmentally, for a long time she tended to match her peers, or only lag behind a little. But coming on for 2 years, she still wasn't walking and her speech was lagging being, and we went to see a paediatrician - he recognised it immediately, and told us without even waiting on karyotyping. It was something of a shock :)
NIPT has only been around for a few years, whereas amnio has been available for decades AFAIK, so I guess it's amnio that's been commonly been available in Norway too?
It's not "changing who gets born and who doesn’t", it's killing the weak, the unwanted, the vulnerable.
It's saying that our lives have meaning and worth and dignity only so long as we are wanted and not a burden to others.
Few minds and opinions change on HN but I encourage anyone viewing this as a positive development of society to meet someone with down syndrome in person and ask if that person would be better off killed.
I have a daughter with Down's (I've posted a couple times in this thread already), but I still view this as a positive development.
I love my daughter dearly, and would die for her if need be - and I don't see any contradiction with this; I don't want my daughter to have Down's and the additional possibility of health issues that goes with it, or of course the inevitable societal issues. Her life is going to be a lot harder than that of a typical person, and of course it has been and will continue to be tough on her parents.
But this isn't about parents killing their existing children, it's about allowing future parents to make a choice whether to bring someone with possibly very severe disabilities into the world.
Our society defines it as okay. You apparently don't agree with this but you are not the majority here.
No human aborts a fetus for fun.
My wife and i lost our 'fetus' on the 3 month mark. There have been a lot of thoughts about this experience and lots of emotions. And i would probably abort a fetus with Down Syndrom.
No one is doing an abortion easy. It is never easy for whatever reason and its not your place to criticize it when its not your responsibility.
You have to understand one thing: People are able to seperate the wish of not having a kid with down syndrom from other human beings who have down syndrom.
https://en.wikipedia.org/wiki/Homicide https://en.wikipedia.org/wiki/Fetus
" The other question related to the beginning of human life is even more difficult to answer. It is the fertilization of the egg cells; but a conglomeration of cells in the early phase of pregnancy can hardly be characterized as a human person. The human identity, personality, and worth is associated with the functioning of the brain, so only when the brain is fully developed can there be any talk about an unborn human being." https://pubmed.ncbi.nlm.nih.gov/7476658/
Just because you say 'It is absolutly killing a human' your statement is wrong.
I'm clearly fine with abortion before the 3th month.
And no if you wanna have it clarified: I think a human being is more than just a small or big blob of cells
My opinion did not change after we lost our 'fetus' in the 3th month. And no seeing a small body lying there was not a nice experience.
Let me try to reword it:
Yes it is a human fetus; Its not a human being.
Your choice of words is particularly egregious, in my opinion. Killing is not the same as homicide. Human is not the same as person. A fetus is not a clump of cells, or a baby.
A "human being" is just a human (a common usage scientific term), and human is just a species of animal. So yes, a "human fetus" is a "human being". "Person" is a legal/philosophical term, not necessarily a scientific one. "Killing" simply refers to ending the life of a living thing. "Homicide" (the mention of which you removed?) is a legal term for killing a person. To drive this point home further, we have concepts for non-human persons, and non-person humans. They aren't interchangeable in all contexts.
The scientific reality and proper usage of the English language is abortion is killing humans (human fetuses). This is not up for debate. The debate is whether these humans are "persons", which entitles them to rights, or if they are not, if they deserve rights in some other capacity (e.g. my dog isn't a person but has rights).
Again, when people say "it's not killing" or "it's not a human", or tangentially, "it's a clump of cells" or "it's a baby" they are factually wrong and are deliberately misusing those words in an attempt to strengthen their argument, when in reality it makes them look either dishonest or ignorant.
To me, your posts are either dishonest, or ignorant. That was my entire point.
Killing <animal> and killing <animal> fetus is not a an equivalence in animal medicine.
https://www.merckvetmanual.com/reproductive-system/abortion-...
I do not subscribe to your belief that there is no debate, with that assertion.
Abortion stops a pregnancy and a pregnancy is the production of a human life.
You are also not killing sperm by using a tissue, neither do you kill an egg.
You also don't kill an embryo as those things are not alive.
Just because a biological mechanism started doing what it is programmed to do, doesn't make it alive.
Would you argue that a virus is alive?
When do you draw your line of a biological machine becoming alive?
No, that is not logical. Killing a caterpillar is not killing a butterfly. Known forms of life are not absolute in classification. You have decided to classify a fetus as a subset and others do not. Good luck with whatever.
For example, by some definition of species, many people with Down Syndrome do not belong to homo sapiens or any species really, due to inability to reproduce.
The closest definition you seek is DNA matching arguably is not favorable either because the syndrome causes severe DNA structure difference.
> incorrect way people speak
You bubble about scientific definition, and call people. And yet pose no real argument.
No, we shouldn't call it that because that's not what it is.
https://en.wikipedia.org/wiki/Eugenics
> In this period, people from across the political spectrum espoused eugenic ideas. Consequently, many countries adopted eugenic policies, intended to improve the quality of their populations' genetic stock. Such programs included both positive measures, such as encouraging individuals deemed particularly "fit" to reproduce, and negative measures, such as marriage prohibitions and forced sterilization of people deemed unfit for reproduction. Those deemed "unfit to reproduce" often included people with mental or physical disabilities, people who scored in the low ranges on different IQ tests, criminals and "deviants", and members of disfavored minority groups.
The key element, here, is that eugenics involves the state controlling the rights of the individual to reproduce in the first place.
In this case we're dealing with the exact opposite: providing additional information in support of a person's right to make a decision about whether they shouldn't reproduce.
I would make the claim that, given a positive test for a genetic disorder, forcing a person to bring that fetus to term is in fact far closer to the troubling elements of the eugenics movement--a direct intervention by the state in a person's reproductive decisions--than the current situation.
My daughter was tested (non invasively) as at high risk of downs (the doctor said 50/50) we decided we didn't care... lo and behold: she doesn't have downs. I don't know enough about the area to make judgements, but I am definitely concerned that it's not a slamdunk that the doctors are getting this right.
There is a huge agenda of control around pregnancy in the UK - our consultant was so arsey about us not doing the follow-up that I had to get him changed out (it later turned out that he was struck off 2 years later for more or less murdering a woman and child, but that's another story).
It works by testing tiny amounts of the baby's DNA that can be found in the mother's blood. It is close to 100% effective for detecting Down's Syndrome.
It needs only a blood sample, so carries no meaningful risk for mother or fetus, but it's more expensive than the older amnio or sampling methods, so is usually only available privately (at least in the UK).
Of course both answers to that question have very far reaching implications, and to answer one way or another almost always reveals oneself to be a hypocrite in some way. But instead of actually engaging with these hard questions we equivocate and try to build logical defenses that allow us to have our cake and eat it too.
Unfortunately with modern science and medicine we will be forced to reckon with the consequences of these unspoken choices soon or later. I don't pretend to know what is correct here, and I don't necessarily pass judgement on those who would answer these questions differently than I, but I do have large amounts of contempt for anyone who tries to ignore the realities of their positions and even more contempt for those who think the answer is obvious and self explanatory.
I could not, in good faith, deliberately bring a child with Down syndrome to this world. Just could not.
http://www.vatican.va/content/john-paul-ii/en/encyclicals/do...
Its not relevant when your society defines abortion before 3 month okay, which plenty do and i agree with.
If we would see it different, than it would be murder.
https://news.ycombinator.com/item?id=25140048
Once we are talking about counterfactuals, that is things like "would haves" about people who don't exist but could have, it opens the door to considering other people who don't exist but could have.
Under the assumption that a family who proceeds with the Downs foetus to birth has fewer children afterwards, ought we not to consider the later children who might not exist as part of this moral equation too?
What if a family who proceeds with the Downs foetus to birth is likely to have multiple fewer children after than they would have had?
Some people born with disabilities might disagree - and have every right to disagree - and see the action of abortion as a judgement against their own existence. But in doing so, are they not identifying themselves more with the counterfactual Downs foetus than with the counterfactual non-Downs foetus?
If so, does that not suggest people who think that way identify themselves with the disability to some degree ("In that world I would have been aborted"), rather than identifying themselves as people independent of a physical characteristic ("In that world I would have been guaranteed my body would not have this disability")?
There is no shortage of suffering, we don't need to choose to create more.
> Next to the federal government, Catholic Charities is the largest US social-safety-net provider.
Getting thrown under the bus by the crowd who wrote it is a sure sign of sainthood.
(2) The human institution of the Church, especially where wealthy, is highly corrupt and I say that as a devout Catholic who believes Christ established the Catholic Church as His church (tldr the human & divine Church are separate things).
(3) One of the likely reasons that Benedict abdicated was that he did not want to be "taken advantage of" as he saw various Vatican higher-ups do with the aging and frail JPII.
(4) JPII sadly dismissed cases of allegations. One thing to keep in mind though is when he was growing up in Nazi and then Soviet occupied Poland he would see the occupying forces falsely accuse "resistance" figures of abuse in order to hobble their reputation.
(5) While JPII did make mistakes, it is also my belief that many Vatican figures still-living use him as a scapegoat to hide their own errors. They are doing their best to hide any and all investigation and purely say "this is the fault of people who are now dead." They do not want any oversight. For example, why did they choose to finally release the long-awaited report on Cardinal McCarrick, the most prominent US abuser, the week of the presidential election in the US? Aiming to have it buried!
We have to see it as a whole thing and as a whole is negative.
However.
Despite the early life reverence, I feel that as a grown adult I do now see him in a completely different light - as a man put into a certain role which he has played correctly, and ultimately he has protected an institution that sheltered abusers, corruption, wealth and which ultimately is a cancer spreading over Poland right now, destroying the society from within.
Also not everything is about US - look what's happening in Poland with cardinal Dziwisz, the closest confidant of the pope - I always suspected he was a piece of shit after disobeying the direct testament of JP2 and making money off of it, but now it's been confirmed he's much much worse than just profiteering off a dead pope.
The "image" of JPII is a conundrum. On the one hand, he was extremely charismatic and gave many, many people a very real hope and a sense of purpose during a desolate century. However, he was and is not Jesus and the "media Pope" is a problem the Church has been dealing with since. The Pope must travel and must smile, etc etc whereas we know a Pope certainly has his work cut out for him just in the Vatican. The Church has never taught that every image and utterance of the Pope is divinely wrought, but media has twisted us into an odd place. "You wouldn't dare criticize the Pope, would you? Look how holy and beautiful he is!". (By media and "us" I am referring to believing Catholics; obviously secular media has no problem criticizing the Pope). In the US there has been a marked shift since McCarrick in the laity for holding the bishops more accountable, which albeit it is proceeding at a much slower pace than any of us would like. But a dam has broken, thank God.
Regarding the US, I mentioned the American church & McCarrick as an example of still-living Vatican power-players shifting blame and it was not my intention to say such problems are unique to America. Indeed, Dziwisz and other players boil my blood like little else.
The quote seems to imply there is value in the suffering of a disabled child and its parents - suffering for its own sake - which is absolutely horrific.
I think it would be more accurate to say that the quote is asserting that human life has great value _regardless_ of the amount of suffering involved. (Or put another way, the total value of someone's life is not a function of the amount of suffering they experience.) Certainly this is a challenging worldview since naturally everyone wants to avoid suffering (or at least avoid suffering that does not help them achieve some goal). But at the same time it is hard to make the general assertion that people who have suffered greatly would have been better of not existing.
I am reminded of the story about Johannes Steinhoff [1], a German fighter pilot in WWII. Apparently after witnessing another pilot die horribly in a fire, he asked his friend to just kill him quickly if he ever ended up in a similar situation. As it turns out, Johannes was later a victim of a terrible explosion (even his eyelids were burned off). His friend literally drove to the hospital to shoot him and put him out of his misery, but was prevented from doing so by the medical staff. Johannes ended up recovering and went on to become a key player in the post-war German Air Force and the German Military Representative to the NATO Military Committee.
I don't quite know what to think of this story because on one hand I would not wish his ordeal on my worst enemy. But, on the other hand, it is hard to say that anyone would have been "better off" if his friend had killed him. Life is often what we choose to make of it and it is impossible to avoid all suffering. It seems like the best we can do is play the hand that we are dealt and try to regard all things outside of our control with equanimity.
I have a daughter with Down's, so I probably know more about it that most.
> You will never surpass the cognitive capacity of a young child
This is just completely untrue.
> you will have impaired vision and hearing
There is certainly a higher incidence of vision and hearing problems in people with Down's, but it's far from guaranteed. Further more, glasses and hearing aids are a thing.
> if you ever manage to speak at all
I'm struggling to take you seriously now - this is utterly absurd.
> You will have a myriad other chronic and painful health problems
There is a higher incidence of some physical and mental illnesses in people with Down's, but again, it's far from guaranteed, and again need not have a large impact. For example, a lot of those born with Down's have a small hole in their heart, but nowadays it's fairly easily rectified. Not sure what "painful" health problems you could be referring to.
Are extreme religous people okay with any abortion? Then there is no tension for them either and as far as i know, those are the more/real prominent examples of groups who saying something about this topic at all