At Home with Down Syndrome (2008)(thenewatlantis.com)
thenewatlantis.com
At Home with Down Syndrome (2008)
https://www.thenewatlantis.com/publications/at-home-with-down-syndrome
148 comments
Just curious could you give examples of them being witty?
Different situation but I have a 6yo with downs and this rings true to me.
He’s always trying to crack a joke. He’ll say loudly “good night Uschi!” (his grandmother’s nickname) to my wife with a grin on his face like he made the funniest joke. Not Seinfeld over here but we laugh pretty hard.
He’s always trying to crack a joke. He’ll say loudly “good night Uschi!” (his grandmother’s nickname) to my wife with a grin on his face like he made the funniest joke. Not Seinfeld over here but we laugh pretty hard.
Always wanting to subvert serious situation. For example... me being in a bad mood having to get up at 5.00am to milk the cows, and this Downs boy looking up at me with a crazy big-ass grin that would completely wipe all sour thoughts from my mind.
They play with language in a very disarming manner. Not highbrow, but will find compelling nicknames for their loved ones and deliver them in a way that is difficult not to be drawn in by.
They play with language in a very disarming manner. Not highbrow, but will find compelling nicknames for their loved ones and deliver them in a way that is difficult not to be drawn in by.
That's so true about playing with language...
We had a resident with Downs who needed assistance every day ...
But he got tired always asking "You help me?"... and started saying "I help you!" (and laughed)...
We knew what he meant & came over ... he got a kick out of swapping his pronouns :)
We had a resident with Downs who needed assistance every day ...
But he got tired always asking "You help me?"... and started saying "I help you!" (and laughed)...
We knew what he meant & came over ... he got a kick out of swapping his pronouns :)
I've always pondered the "genetic utility" if you will of downs folks. I could imagine they play a real "symbiotic relationship" with their familial cohorts bringing lighthearted joy and other social softeners that add brightness to a group. It does come with costs however like people say with lifetime care, but the fact that these loving genetic subpopulations persist makes me wonder if they are not in fact anomalies but part of a richer fabric.
You are suggesting that a parent who has an offspring with Down Syndrome is likely to have more survining descendants than the average human?
Probably not... but ancillary benefits like this can lower the selective pressure against trisomy 21, so that it's less likely to go away.
That's the thing. Something rare like Down Syndrome only has a very small selective pressure against it, and it's really easy for other effects to remove a fraction of it.
So things that seem ridiculous like this assertion or the "super uncle" theory about homosexuality are not so easily dismissed when one really thinks about them. Of course, there can be selective benefits from genes with a propensity for (forming trisomy 21, having homosexual individuals, etc) when the specific condition doesn't manifest.
That's the thing. Something rare like Down Syndrome only has a very small selective pressure against it, and it's really easy for other effects to remove a fraction of it.
So things that seem ridiculous like this assertion or the "super uncle" theory about homosexuality are not so easily dismissed when one really thinks about them. Of course, there can be selective benefits from genes with a propensity for (forming trisomy 21, having homosexual individuals, etc) when the specific condition doesn't manifest.
That's all very nice, but it isn't wit.
Comedy is extremely situational — first scene in first episode of Buffy The Vampire Slayer made somebody dying funny — so if OP says someone was witty when they did something, they almost certainly were.
I think wit is in the eye of the beholder as well. For the record, wit is typically defined as a form of verbal humor, so it's not really the same thing as situational comedy.
And this might also be a case of one's expectations. If you spent your entire week teaching preschool, and then on the weekend met up with some adults for drinks later, you might come out of that evening with the thought that those were some of the most urbane sophisticated people you'd ever met.
Yeah... because you spend the vast majority of your day preventing toddlers from sticking crayons up their noses. It's the intellectual equivalent of the ebbinghaus illusion.
And this might also be a case of one's expectations. If you spent your entire week teaching preschool, and then on the weekend met up with some adults for drinks later, you might come out of that evening with the thought that those were some of the most urbane sophisticated people you'd ever met.
Yeah... because you spend the vast majority of your day preventing toddlers from sticking crayons up their noses. It's the intellectual equivalent of the ebbinghaus illusion.
My uncle sometimes puts his shoes on the wrong feet and once managed to put his jeans on backwards (buttoned but not zipped behind him). As he walked past the doorway my mom (his sister) said, "Your pants are on backwards!"
Without missing a beat, he countered, "Maybe I was going the other way..." and sort of moonwalked back the way he came.
Without missing a beat, he countered, "Maybe I was going the other way..." and sort of moonwalked back the way he came.
That's hilarious!
this is too funny haha, thanks
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.
It is not unique, but it is definitely rare. Like, super rare.
If you don’t exercise, I am impressed. Actually, I can do it to. But this is because I have Ehlers Danlos syndrom (hyper mobility). This guy I am referring to would actually adopt the pose when he was relaxing. It was as natural to him as folding his arms.
You're aware that average in health for the mostly western audience of this website is overweight bordering on obese right?
Disregarding that though, I'm legitimately shocked to learn that anyone, fat or not, could do that without a regular stretching routine.
Disregarding that though, I'm legitimately shocked to learn that anyone, fat or not, could do that without a regular stretching routine.
> They were amongst the most ... witty people
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.
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.
I think he was talking about Down Syndrome folks, and I can tell you that DS folks are the most friendliest folks in the crowd. I'll even go ahead and say that they are more charismatic than most software engineers.
My younger brother has Down's, yet he tends to be way more friendly with not only strangers but my relatives too, compared to myself.
My younger brother has Down's, yet he tends to be way more friendly with not only strangers but my relatives too, compared to myself.
This weirdly reminded me of how Michael Bluth fails to realize his girlfriend Rita has a learning disability because of her aristocratic sounding British accent in the show Arrested Development.
Is it wrong to say they look alike? There are just times where there is such commonality in a group due to genetic abnormalities and other factors that descriptions are more a fact than a stereotype.
Wrong? No. But definitely pointless and insensitive. Common genetic factors causing similar phenotypes isn't a novel, or even interesting, thought.
Is it pointless and insensitive for a scientific manual to indicate that all individuals with a certain genetic disorder look incredibly similar across races and genders?
My point is that there is a difference between stereotyping races/cultures/disabled and indicating highly correlated attributes in individuals with specific genetic/chromisonal abnormalities.
My point is that there is a difference between stereotyping races/cultures/disabled and indicating highly correlated attributes in individuals with specific genetic/chromisonal abnormalities.
They don't look incredibly similar. They have common features that are not seen in the vast majority of others, which tricks your brain into not looking at their other features. It's the same as thinking Han Chinese people or Irish people look incredibly similar.
Is it bad for a textbook to point out how hypoxia kills brain cells during drowning? No. Is it tasteful to bring up at a funeral for someone who drowned? Also no.
If it's in a useful and tasteful context, discuss away. Otherwise, just don't be a chode.
If it's in a useful and tasteful context, discuss away. Otherwise, just don't be a chode.
I would think that's more of a cognitive thing where if you don't normally spend time around people with Down's syndrome, the particular physical features that characterize Down's syndrome really stand out in a way that makes you perceive them as looking less distinctive as individuals. But once you get used to it, it becomes apparent that they look as different from one another as anyone else does.
He spoke of personal experience of people he knew; and you're lecturing about proper language.
"We shouldn't praise because we risk condescending" ... whuf. and people call me crazy.
"We shouldn't praise because we risk condescending" ... whuf. and people call me crazy.
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).
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).
Are you frantic because of a specific reason?
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.
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.
Respect to you sir.
Fair play - it must have been tough with that pressure to support your family...
I'm a bit frantic for more mundane reasons - suffer from an anxiety condition that triggers sometimes. It's ironic, working in that home with the residents brought my own condition to the surface. I got diagnosed soon afterwards...
Thankfully life more peaceful now... and I'm trying not to be as rushed ...
I'm a bit frantic for more mundane reasons - suffer from an anxiety condition that triggers sometimes. It's ironic, working in that home with the residents brought my own condition to the surface. I got diagnosed soon afterwards...
Thankfully life more peaceful now... and I'm trying not to be as rushed ...
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.
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.
> One of the advantages (against the many disadvantages) of IVF is the available genetic and chromosome testing of a few days old blastocyst.
Could you please expand a bit on that?
Could you please expand a bit on that?
They can test an embryo before implantation which means you don't have to abort so it has much less emotional impact.
Ah ok, so the test itself is the same, just one is done before implantation, and the other afterwards. Thanks.
Yeah when the blastocyst is a few days old they can extract a few cells and cryogenically freeze the remaining blastocyst with minimal chance of having ruined it. Those cells are sent to a lab and screened for many chromosome and genetic defects.
In fact, ahead of time the IVF clinic will get blood from mom and dad as well as saliva swabs from their parents to build a model on genetic compatibility. For example, the mom and dad may both be carriers for a rare genetic disorder and this can be explicitly tested against each blastocyst to ensure a baby won’t be created expressing that gene which would lead to defect.
And of course the cells will be tested to ensure each chromosome is normal and blastocysts that are defective are discarded.
This isn’t a perfect science as they are slim chances the cells being tested somehow don’t have the right genetic information (this is called mosaicism) but that’s rare. So overall it gives mom and dad the assurance they are having a normal baby from a biological genetic and chromosome perspective. Because IVF is such a long process fraught with danger it’s something many IVF consumers opt for. Of course, there are ethical and moral concerns regarding this for some people so it’s their choice to not do it or do it and request the blastocysts be preserved and potentially implanted anyways. Now THATS an interesting debate.
In fact, ahead of time the IVF clinic will get blood from mom and dad as well as saliva swabs from their parents to build a model on genetic compatibility. For example, the mom and dad may both be carriers for a rare genetic disorder and this can be explicitly tested against each blastocyst to ensure a baby won’t be created expressing that gene which would lead to defect.
And of course the cells will be tested to ensure each chromosome is normal and blastocysts that are defective are discarded.
This isn’t a perfect science as they are slim chances the cells being tested somehow don’t have the right genetic information (this is called mosaicism) but that’s rare. So overall it gives mom and dad the assurance they are having a normal baby from a biological genetic and chromosome perspective. Because IVF is such a long process fraught with danger it’s something many IVF consumers opt for. Of course, there are ethical and moral concerns regarding this for some people so it’s their choice to not do it or do it and request the blastocysts be preserved and potentially implanted anyways. Now THATS an interesting debate.
> Yeah when the blastocyst is a few days old they can extract a few cells and cryogenically freeze the remaining blastocyst with minimal chance of having ruined it. Those cells are sent to a lab and screened for many chromosome and genetic defects.
Would that part would be different from in utero tests? (short of the freezing of course) It has been 15 years that we did the tests (on amniotic fluid) so the world must have moved forward by now.
> to build a model on genetic compatibility.
I guess that this can also be done for "standard" to-be parents.
> or do it and request the blastocysts be preserved and potentially implanted anyways. Now THATS an interesting debate.
Oh yes - the debate on abort or not abort is already have-a-seat-and-get-popcorn worthy, adding to this a dose of "willingly implant a known defective blastocyst" turns that in to an action movie.
Would that part would be different from in utero tests? (short of the freezing of course) It has been 15 years that we did the tests (on amniotic fluid) so the world must have moved forward by now.
> to build a model on genetic compatibility.
I guess that this can also be done for "standard" to-be parents.
> or do it and request the blastocysts be preserved and potentially implanted anyways. Now THATS an interesting debate.
Oh yes - the debate on abort or not abort is already have-a-seat-and-get-popcorn worthy, adding to this a dose of "willingly implant a known defective blastocyst" turns that in to an action movie.
I’m not sure on the first question but I imagine that yes, the same types of tests are conducted.
As for any to-be parents - yes and I’d recommend it. You may find you both carry a relatively rare recessive gene that would give your offspring a 25% of having a certain disorder. This can guide your decision on if you want to go forward with natural fertilization and risk it (and make the choice after testing the cells of the developing baby) or opt for IVF to prevent the disorder (and all others that are testable). In parents that don’t have infertility problems, IVF is pretty successful. Especially if the mother is still in prime form (under 35 great but under 30 is spectacular) and the father doesn’t have poor sperm count and/or quality.
For the last one I err towards it being a personal liberty to decide what life you do and do not bring into the world. But it does get more hairy when you start discussing public support in terms of resources to support the child/family. Then it is everyone’s business imo. But I’d imagine people that can afford IVF don’t rely on government programs to finance their life.
As for any to-be parents - yes and I’d recommend it. You may find you both carry a relatively rare recessive gene that would give your offspring a 25% of having a certain disorder. This can guide your decision on if you want to go forward with natural fertilization and risk it (and make the choice after testing the cells of the developing baby) or opt for IVF to prevent the disorder (and all others that are testable). In parents that don’t have infertility problems, IVF is pretty successful. Especially if the mother is still in prime form (under 35 great but under 30 is spectacular) and the father doesn’t have poor sperm count and/or quality.
For the last one I err towards it being a personal liberty to decide what life you do and do not bring into the world. But it does get more hairy when you start discussing public support in terms of resources to support the child/family. Then it is everyone’s business imo. But I’d imagine people that can afford IVF don’t rely on government programs to finance their life.
> For the last one I err towards it being a personal liberty to decide what life you do and do not bring into the world. But it does get more hairy when you start discussing public support in terms of resources to support the child/family. Then it is everyone’s business imo. But I’d imagine people that can afford IVF don’t rely on government programs to finance their life.
It certainly is a personal liberty. I am French, atheist, and I am very much attached to that freedom.
Having healthy discussion about this is good as it is an eye opener for all the sides involved.
Now, there is the general population part: someone who willingly decides to have a sick child that will cost more to the society must be ready to bear all the costs, including the ones after their death.
On the other hand, this should also apply to people who smoke, are overweight etc. and though this choice are also a burden for the society, financially speaking.
The last part (money) is not an easy one. The first one (morality) is much easier as everyone is an expert in the subject :)
It certainly is a personal liberty. I am French, atheist, and I am very much attached to that freedom.
Having healthy discussion about this is good as it is an eye opener for all the sides involved.
Now, there is the general population part: someone who willingly decides to have a sick child that will cost more to the society must be ready to bear all the costs, including the ones after their death.
On the other hand, this should also apply to people who smoke, are overweight etc. and though this choice are also a burden for the society, financially speaking.
The last part (money) is not an easy one. The first one (morality) is much easier as everyone is an expert in the subject :)
> have a sick child that will cost more to the society
This is easy - you just need a way to measure in advance someone's total utility to society, including any inventions they might make, number of people they make laugh or encourage, how many lives or livelihoods they may save, and then decide whether or not they're worth it.
Get back to me when you have that, would you?
This is easy - you just need a way to measure in advance someone's total utility to society, including any inventions they might make, number of people they make laugh or encourage, how many lives or livelihoods they may save, and then decide whether or not they're worth it.
Get back to me when you have that, would you?
Oh come on - you pay taxes, don't you? Either we get rid of money and we live in some kind of wonderland, or we pay for the society and expect it to be serious.
I am very much for a socialist society, like the one we have in France. I am ready to pay, and do it with pleasure, so that people born disabled, or living in poverty have a chance like my children do.
When someone makes the clear decision to have a child that will be disabled then that person must assume that the world will not be running to help them when they realize they have huge expenses. They wanted these expenses so please do not come crying afterwards, though campaigns.
This is very much different from accidents - we need to be solidar here.
This is very similar to people who smoke or eat to become overweight and then cry when comes the operation that costs a fortune.
Sorry - but I want my money to be spent on things that help the ones who need help and did not expect or predict to be in a bad situation. Not the ones who decided to have a disabled child becaise of some shower vision of theirs.
I am very much for a socialist society, like the one we have in France. I am ready to pay, and do it with pleasure, so that people born disabled, or living in poverty have a chance like my children do.
When someone makes the clear decision to have a child that will be disabled then that person must assume that the world will not be running to help them when they realize they have huge expenses. They wanted these expenses so please do not come crying afterwards, though campaigns.
This is very much different from accidents - we need to be solidar here.
This is very similar to people who smoke or eat to become overweight and then cry when comes the operation that costs a fortune.
Sorry - but I want my money to be spent on things that help the ones who need help and did not expect or predict to be in a bad situation. Not the ones who decided to have a disabled child becaise of some shower vision of theirs.
In the scenario mentioned, no one decided to have a disabled child.
I should add - for men with poor count and/or quality there is a product called ICSI which involves the IVF clinic inspecting sperm cells and finding “the best” one and injecting it into the ovum.
To me it’s spectacular how involved we can be in the natural selection process due to our brains evolving so much. I can’t wait to see how we further this.
To me it’s spectacular how involved we can be in the natural selection process due to our brains evolving so much. I can’t wait to see how we further this.
> or opt for IVF to prevent the disorder (and all others that are testable)
This is a point I never considered (theoretically - I am a parent of teens so the question is over for me). I always assumed that IVF is much more risky (all things taken into account) that natural procreation but I have never actually gave a thought on that.
This is a point I never considered (theoretically - I am a parent of teens so the question is over for me). I always assumed that IVF is much more risky (all things taken into account) that natural procreation but I have never actually gave a thought on that.
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.
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-...
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-...
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!
I can’t even imagine the stress this has put you through. Best wishes in your endeavors.
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.
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.
Thank you for sharing. I learned so much reading your through your blog. I hope you continue to post updates.
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.
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.
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 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.
Yeah of course, it is a really tough decision.
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 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]
[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.
Well here's an example for you: https://slate.com/human-interest/2021/03/dear-prudence-abort...
And having a special needs child can be massively life changing, too.
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!
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.
2lwxxtj(1)
What does this mean? Like you don't think people should have the choice to abort?
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.
> It’s effectively genocide
I would say that this is effectively getting rid of a batch of cells.
It depends on your culture, vision of the world etc.
I would say that this is effectively getting rid of a batch of cells.
It depends on your culture, vision of the world etc.
It's not genocide by any definition. That would constitute eliminating an existing culture / ethnicity / society.
If eliminating greater than 90% of a group of people via genetic testing and systemic demonization isn't genocide, nothing is.
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.
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;
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
>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.
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.
People with Down Syndrome are not in any sense a nation or national group. It is not applicable.
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.
This. Also, potential risk for themselves when the caring persons are not alive any more.
>which is kind of sad, since those with Down Syndrome can live fulfilling lives.
So can people that don't have Down Syndrome.
So can people that don't have Down Syndrome.
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!
[0] https://www.heartsofjoyinternational.com/
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/
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.
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.
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.
Of course as they often do, these terms of classification became derogatory after people used them as an insult.
"idiot" may have been a relatively innocent medical term, but "mongoloid" has a very racist history as a way to describe people with Down Syndrome (https://en.wikipedia.org/wiki/Mongolian_idiocy), including a popular pseudoscientific theory that people with Down's were a result of "Caucasian" interbreeding with supposedly more primitive "Mongoloid" races https://en.wikipedia.org/wiki/The_Mongol_in_Our_Midst
Indeed and many of the terms, like “idiot” were pseudoscientific as well. Done and justified “by science” but this is not a condemnation of the scientific method. In fact, it further proves liberal science is the best known approach to knowledge and truth as it leaves open that bad science can be crushed by better science. I hope we continue this way however anti liberal science our politics are today.
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.
https://en.wikipedia.org/wiki/Champions_(2018_film)
https://en.wikipedia.org/wiki/Champions_(2018_film)
I found the movie average, except for the last part (I will not spoil it). That part really gives a special, positive view of the world.
Just for that the movie is really worth watching.
Just for that the movie is really worth watching.
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.
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.
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
What a fantastic read. Tears in my eyes.
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, 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.
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.
It is more of parents making these decisions based on what their lives would be. And practically, having disabled child is not easy.
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C06aka(1)
Jabbles(5)
> 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.