I worked in a residential community consisting of many young people with various disabilities. Most of these had Down’s syndrome. From the OP...
> Individuals with Down syndrome generally have outstanding social skills...
Dam right! They were amongst the most compassionate, loving and witty people I have ever met. I remain humbled at their extraordinary humanity.
Other things the articles mentions are also true. Certainly Low muscle tone. This also signifies incredible flexibility. ...Seeing a 40 year old man with this condition bend over and place both his palms on the floor without bending his knees. Try it now! I dare you!
But ultimately these folk will always need institutional or family based care, or close oversight, for the rest of their lives. What bugs me is ‘stories of success’, like the young girl with downs who is a model. This does no one any favor, instead placing unreal expectations on them.
This residential community was very closed, almost like a religious retreat, or a very small village. In many ways it was the perfect place for such people. They held a valuable place in our lives, and were ‘useful’ in the way we all strive to be. In a more modern setting, their lives are more difficult.
I am 37, male, and can place both palms on the floor without bending my knees. I am definitely average in health and am sure this isn't unique, however, I am not discounting ligament laxity which is prevalent in individuals with Down syndrome.
We have to be careful about praising the disabled like this, because we risk being condescending. This is an age-old phenomenon – in Ulysses (published already a century ago), James Joyce has his protagonist muse on the fact that people are so quick to praise a blind person for his jokes not because the person is actually funny, but simply because people’s expectations towards the disabled are so low.
In 2006 I worked for six weeks in a residential home for people with disabilities - some had Down Syndrome.
Even though the work was stressful & I've had many jobs since, I still remember each resident so clearly. I don't know why really... they've always stayed in my mind.
There was one man in his 60s with Down Syndrome and he did the same routine, slowly each day... but so unhurried, and present... it took him an hour to eat his lunch... He kind of haunts me to this day because I'm always a bit frantic, rushing...
But definitely spending time with people with disabilites opens another layer on life (although it can so hard for the parents/family caring for people with profound disabilities).
I was frantic when I was the sole breadwinner for my family, my brother is disabled and my grandmother had alzheimer's. As things improved with my family, I was able to move us into a larger home and I was able to relax a bit more.
Based on her in utero sonar scans, and her proportional leg measurements, our youngest, Grace, was flagged to us as perhaps going to be born with Down's Syndrome.
That wasn't the case in the end, but at the time it was presented as an earth-shattering possibility to us. That was tough, but we'd resolved long before to not let info like this affect anything, other than needing to make different life decisions, and to be honest she's so amazing that I can't imagine viewing her differently if she did have it.
One of the advantages (against the many disadvantages) of IVF is the available genetic and chromosome testing of a few days old blastocyst. It makes the decision of discarding much easier than if the screening is done in utero.
edit: I hadn't really woken up when I first read the article, so I read it again after my morning coffee. I can't express how nice it was to read it, it sums up my experience perfectly. I'm teary eye'd writing this, I had just finished reading it, and then look behind me and see mom and baby on the sofa passed out next to each other, we've literally only been home about 15 hours, and I'm so happy seeing them together, I've completely forgotten about the past 6 months in the ICU.
A nurse gave us a copy of "Welcome to Holland" not too long after we had gotten the diagnosis. It was a beautiful explanation as to why life is going to be different than we expected, the same destination, just a different path. It wasn't until a few weeks later that we realised the author's name is Emily Pearl Kingsley, which is oddly coincidental as my name is Kingsley. Weird.
This is an interesting time to read this, thanks for sharing. My wife and I just brought our 6 month old daughter home from the ICU after spending all but 2 weeks of her life there.
Our lil baby has Kabuki syndrome, it’s extremely rare, but has similar attributes to Downs. Kabuki can and has affected multiple organ systems with our girl, she has very complex heart disease, a pelvic kidney, hypotonia, hip dysplasia, malrotation, right isomerism, asplenia, immunodeficiency, endocrine issues, severe hearing loss etc, etc.
It was a hard pill to swallow that I am a dad to a special needs child now. Kabuki kids have varying levels of mental and physical disability, but we were told she will likely be generally happy, which is all mom and I really care about. We’re at peace with everything now, and are just extra loving on the small things (like her smiling!)
I do plan on blogging about being a dad to a medical 1%-er, tips/tricks, especially as I am originally from England and now live in the US, if anyone is interested.
Congratulations on having a daughter! I'm sure she will bring a lot of joy to your life. There will be challenges, but you will take pride in her accomplishments like any other parent. The experience will be rewarding. Cheers!
Congrats on your daughter, she's beautiful and I hope with the pace of medicine she can always stay ahead of the curve.
There were many jarring moments in that blog but the number in the last one is probably the most shocking. I deeply hope you find a resolution to that. Vampiric is absolutely the word.
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.
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 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]
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!
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've known and loved a delightful list of people with Down Syndrome throughout my life. My late sister also had such a special place in her heart for them. The bonus chromosome certainly seems to do something beautiful to all the rest!
As the article mentioned, though, there is often a risk of congenital heart defects, and particularly in developing countries, obtaining heart surgery within the first few years can be prohibitively expensive, and end up cutting lives short.
I've recently become a supporter of Hearts of Joy International[0], which has partnered with surgeons in India and helps mothers and their little ones travel from Uganda and the Philippines to get this lifesaving surgery.
I'm not any kind of affiliate or anything, just an enthusiastic supporter!
I've known a guy with down syndrome for over 10 years and saw him at least once a week for years.
He is the happiest person I have ever met. The only time I have ever seen him without a smile was when his mother asked him to stop talking over her. He had a frown for about 5 seconds and then went back to having a huge smile. If you just say hello to him his smile would get even bigger than it already was. Just seeing someone who was so happy all the time really made me feel good.
I moved for a while and anytime I returned he would always ask me about my apartment and the area I was living. He always seemed so interested in my life. Many times people just ask "how are you doing?" but don't actually care since it is just a greeting for them. With this guy he genuinely cared how I was doing. It is so refreshing to have someone like that in my life.
My late uncle was born with down syndrome in the '40s. I saw a letter written by the doctors after he was born saying that he was a "mongolian idiot" (apparently a common term back then) and suggesting he be institutionalized.
In some ways it feels like we as a society have positively progressed since then, but reading about how down syndrome is commonly dealt with today makes me doubt.
Many of these types of words had functional use at one time. If you check Ellis Island immigration records you’ll see people classified as “idiots”, “imbeciles”, “morons”, and other similar terms based on an aptitude test administrated. Those 3 terms describe different levels of perceived intelligence.
Of course as they often do, these terms of classification became derogatory after people used them as an insult.
You can find the movie "Kids Like These" on Youtube (and maybe elsewhere). It is based on Emily Perl Kingsley's "Welcome to Holland" mentioned in the article. Proud to say my brother was one of the "David" characters. He's a movie nut and can tell you the actor/actresses in pretty much any PG rated movie in the last 20 years.
'Campeones' (Champions), directed by Javier Fesser in 2018, is a beautiful movie inspired by 'Aderes' team in Burjassot (Valencia, Spain), a team created with people with intellectual disabilities, some of them with Down Syndrome.
I didn't like the article. It cherry picks mild cases and appeals to sentiments to refute the "bleak statistics" ("the learning impairments and health problems, the strong possibility of heart surgery in the first few months of life, the reputedly high divorce rate of parents of a child with special needs"). It also makes it looks like a bad thing that we manage to detect and prevent 90% of the births.
Add to that the quote at the end about "every family should have a down syndrom kid" and all I can think is there"'s a strong case of misery loves company here.
Down syndrome continues to be the most common chromosomal disorder. Each year, about 6,000 babies are born with Down syndrome, which is about 1 in every 700 babies born.
Between 1979 and 2003, the number of babies born with Down syndrome increased by about 30%.
Older mothers are more likely to have a baby affected by Down syndrome than younger mothers. In other words, the prevalence of Down syndrome increases as the mother’s age increases. Prevalence is an estimate of how often a condition occurs among a certain group of people. To estimate the prevalence of Down syndrome, the number of pregnancies affected by Down syndrome is compared to the total number of live births.
The documentary The Crash Reel is about a snowboarder who gets a traumatic brain injury, but the comments of one of his brothers (who has Down’s syndrome) on his life and on his family form part of it - really interesting to watch
Interesting how scientific technology gets used in various cultures. Ultrasounds are illegal in some countries because people abort based on gender due to their cultural view of humanity.
Western secular society looks at humans more as mechanistic units in an economic machine instead of as spiritual beings with inherent value, so it’s no surprise that 90% of downs tests result in an abortion.
> Western secular society looks at humans more as mechanistic units in an economic machine instead of as spiritual beings with inherent value
As a member of the "western secular society", I do see humans as humans, not economic machines.
I also let these humans make their own decisions based on what they want in life. Some people will want to have children that are disabled (even writing this sounds horrible), others will not.
Condemning someone because they have another view on life drives violence and mistrust. I am surprised that someone who sees people as spiritual beings with inherent value would have such a point of view.
RMS lacks the self censorship and political intuition to not say what many think but know not to say. I disagree with him that " having a child with Down’s syndrome to having a pet." but that's because I've had experience with a neighbor with down syndrome. However, I know many people think that, they just are politically savvy enough not to say it.
It's unfortunate that in today's society, people condemn people like RMS who are not neurotypical for not behaving neurotypically and try to cancel him while at the same time, those same people claim to celebrate diversity.
In Spain you can abort a child with Down's Syndrome because it's ethically better. In the end, they parents and relatives will die and lots of these people can't manage themselves alone, making a huge risk for them.
It's amazing how lots of things, such as research on anything that remotely touches Human Intelligence is considered "Eugenics", bad, fascist.
But killing the unborn is a-ok because they would "suffer", and the worst of all, they would be a burden on the parents who would not be able to continue their hedonistic lifestyles, they should be consuming stuff all the time, for the good of society! Now that is good and desirable.
[+] [-] Daub|5 years ago|reply
> Individuals with Down syndrome generally have outstanding social skills...
Dam right! They were amongst the most compassionate, loving and witty people I have ever met. I remain humbled at their extraordinary humanity.
Other things the articles mentions are also true. Certainly Low muscle tone. This also signifies incredible flexibility. ...Seeing a 40 year old man with this condition bend over and place both his palms on the floor without bending his knees. Try it now! I dare you!
But ultimately these folk will always need institutional or family based care, or close oversight, for the rest of their lives. What bugs me is ‘stories of success’, like the young girl with downs who is a model. This does no one any favor, instead placing unreal expectations on them.
This residential community was very closed, almost like a religious retreat, or a very small village. In many ways it was the perfect place for such people. They held a valuable place in our lives, and were ‘useful’ in the way we all strive to be. In a more modern setting, their lives are more difficult.
[+] [-] yhoneycomb|5 years ago|reply
[+] [-] remlov|5 years ago|reply
[+] [-] Mediterraneo10|5 years ago|reply
We have to be careful about praising the disabled like this, because we risk being condescending. This is an age-old phenomenon – in Ulysses (published already a century ago), James Joyce has his protagonist muse on the fact that people are so quick to praise a blind person for his jokes not because the person is actually funny, but simply because people’s expectations towards the disabled are so low.
[+] [-] farrelle25|5 years ago|reply
Even though the work was stressful & I've had many jobs since, I still remember each resident so clearly. I don't know why really... they've always stayed in my mind.
There was one man in his 60s with Down Syndrome and he did the same routine, slowly each day... but so unhurried, and present... it took him an hour to eat his lunch... He kind of haunts me to this day because I'm always a bit frantic, rushing...
But definitely spending time with people with disabilites opens another layer on life (although it can so hard for the parents/family caring for people with profound disabilities).
[+] [-] WrtCdEvrydy|5 years ago|reply
I was frantic when I was the sole breadwinner for my family, my brother is disabled and my grandmother had alzheimer's. As things improved with my family, I was able to move us into a larger home and I was able to relax a bit more.
[+] [-] robertlagrant|5 years ago|reply
That wasn't the case in the end, but at the time it was presented as an earth-shattering possibility to us. That was tough, but we'd resolved long before to not let info like this affect anything, other than needing to make different life decisions, and to be honest she's so amazing that I can't imagine viewing her differently if she did have it.
[+] [-] nemo44x|5 years ago|reply
[+] [-] kingsloi|5 years ago|reply
A nurse gave us a copy of "Welcome to Holland" not too long after we had gotten the diagnosis. It was a beautiful explanation as to why life is going to be different than we expected, the same destination, just a different path. It wasn't until a few weeks later that we realised the author's name is Emily Pearl Kingsley, which is oddly coincidental as my name is Kingsley. Weird.
https://www.emilyperlkingsley.com/welcome-to-holland
This is an interesting time to read this, thanks for sharing. My wife and I just brought our 6 month old daughter home from the ICU after spending all but 2 weeks of her life there.
Our lil baby has Kabuki syndrome, it’s extremely rare, but has similar attributes to Downs. Kabuki can and has affected multiple organ systems with our girl, she has very complex heart disease, a pelvic kidney, hypotonia, hip dysplasia, malrotation, right isomerism, asplenia, immunodeficiency, endocrine issues, severe hearing loss etc, etc.
It was a hard pill to swallow that I am a dad to a special needs child now. Kabuki kids have varying levels of mental and physical disability, but we were told she will likely be generally happy, which is all mom and I really care about. We’re at peace with everything now, and are just extra loving on the small things (like her smiling!)
I do plan on blogging about being a dad to a medical 1%-er, tips/tricks, especially as I am originally from England and now live in the US, if anyone is interested.
https://kingsley.sh/posts/2021/staggering-cost-of-surviving-...
[+] [-] canam|5 years ago|reply
[+] [-] mberning|5 years ago|reply
[+] [-] Hallucinaut|5 years ago|reply
There were many jarring moments in that blog but the number in the last one is probably the most shocking. I deeply hope you find a resolution to that. Vampiric is absolutely the word.
[+] [-] laluser|5 years ago|reply
[+] [-] nvarsj|5 years ago|reply
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.
[+] [-] throwawaysea|5 years ago|reply
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.
[+] [-] danw1979|5 years ago|reply
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.
[+] [-] OskarS|5 years ago|reply
[+] [-] gadders|5 years ago|reply
[Not OP specifically, just something I have observed]
[+] [-] rubidium|5 years ago|reply
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!
[+] [-] slothtrop|5 years ago|reply
[+] [-] 2lwxxtj|5 years ago|reply
So can people that don't have Down Syndrome.
[+] [-] smeej|5 years ago|reply
As the article mentioned, though, there is often a risk of congenital heart defects, and particularly in developing countries, obtaining heart surgery within the first few years can be prohibitively expensive, and end up cutting lives short.
I've recently become a supporter of Hearts of Joy International[0], which has partnered with surgeons in India and helps mothers and their little ones travel from Uganda and the Philippines to get this lifesaving surgery.
I'm not any kind of affiliate or anything, just an enthusiastic supporter!
[0] https://www.heartsofjoyinternational.com/
[+] [-] _-david-_|5 years ago|reply
He is the happiest person I have ever met. The only time I have ever seen him without a smile was when his mother asked him to stop talking over her. He had a frown for about 5 seconds and then went back to having a huge smile. If you just say hello to him his smile would get even bigger than it already was. Just seeing someone who was so happy all the time really made me feel good.
I moved for a while and anytime I returned he would always ask me about my apartment and the area I was living. He always seemed so interested in my life. Many times people just ask "how are you doing?" but don't actually care since it is just a greeting for them. With this guy he genuinely cared how I was doing. It is so refreshing to have someone like that in my life.
[+] [-] patwolf|5 years ago|reply
In some ways it feels like we as a society have positively progressed since then, but reading about how down syndrome is commonly dealt with today makes me doubt.
[+] [-] nemo44x|5 years ago|reply
Of course as they often do, these terms of classification became derogatory after people used them as an insult.
[+] [-] artificialLimbs|5 years ago|reply
[+] [-] fodmap|5 years ago|reply
https://en.wikipedia.org/wiki/Champions_(2018_film)
[+] [-] BrandoElFollito|5 years ago|reply
Just for that the movie is really worth watching.
[+] [-] bandana|5 years ago|reply
Add to that the quote at the end about "every family should have a down syndrom kid" and all I can think is there"'s a strong case of misery loves company here.
[+] [-] willwashburn|5 years ago|reply
Between 1979 and 2003, the number of babies born with Down syndrome increased by about 30%.
Older mothers are more likely to have a baby affected by Down syndrome than younger mothers. In other words, the prevalence of Down syndrome increases as the mother’s age increases. Prevalence is an estimate of how often a condition occurs among a certain group of people. To estimate the prevalence of Down syndrome, the number of pregnancies affected by Down syndrome is compared to the total number of live births.
[+] [-] bearsnowstorm|5 years ago|reply
[+] [-] lukeholder|5 years ago|reply
[+] [-] mensetmanusman|5 years ago|reply
Western secular society looks at humans more as mechanistic units in an economic machine instead of as spiritual beings with inherent value, so it’s no surprise that 90% of downs tests result in an abortion.
[+] [-] BrandoElFollito|5 years ago|reply
As a member of the "western secular society", I do see humans as humans, not economic machines.
I also let these humans make their own decisions based on what they want in life. Some people will want to have children that are disabled (even writing this sounds horrible), others will not.
Condemning someone because they have another view on life drives violence and mistrust. I am surprised that someone who sees people as spiritual beings with inherent value would have such a point of view.
[+] [-] watwut|5 years ago|reply
[+] [-] unknown|5 years ago|reply
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[+] [-] YeGoblynQueenne|5 years ago|reply
[+] [-] CptMouse|5 years ago|reply
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[+] [-] hycaria|5 years ago|reply
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[+] [-] C06aka|5 years ago|reply
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[+] [-] dang|5 years ago|reply
https://news.ycombinator.com/newsguidelines.html
[+] [-] Jabbles|5 years ago|reply
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[+] [-] dang|5 years ago|reply
https://news.ycombinator.com/newsguidelines.html
[+] [-] nicolas_t|5 years ago|reply
It's unfortunate that in today's society, people condemn people like RMS who are not neurotypical for not behaving neurotypically and try to cancel him while at the same time, those same people claim to celebrate diversity.
[+] [-] C06aka|5 years ago|reply
[+] [-] anthk|5 years ago|reply
[+] [-] ReadFList|5 years ago|reply
But killing the unborn is a-ok because they would "suffer", and the worst of all, they would be a burden on the parents who would not be able to continue their hedonistic lifestyles, they should be consuming stuff all the time, for the good of society! Now that is good and desirable.
Sick world