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Growing up my mom worked closely with children/young adults with disabilities so I was exposed to people with down syndrome from a very young age and I am so incredibly grateful for that. Today I just try my best to keep her work going.
I have a friend who has a 501(c)(3) that makes really nice documentaries about people with Down syndrome, focusing on the positive influences they have on other people in their lives. They're on YouTube. Here's one I watched recently:
"In Iceland, upwards of 85 per cent of women elect to have prenatal testing, and close to 100 per cent of pregnancies where Down syndrome is diagnosed are terminated.
Denmark isn't far behind, with a termination rate of 98 per cent."
Well this guy obviously is an outlier. Same as no down population has people that have exceptionally high and exceptionally low IQ, so does the down population.
Mean IQ is 46.6. To be able to reasonably work 2 jobs, you need to be in 85-99 IQ, which unfortunately for people with down syndrome is very uncommon. I completely understand parents decision to not have baby that in 95% of cases will not be child to take care of itself when the parents are gone.
Unfortuna another documentary about people with Down Syndrome were more heartbreaking. A young girl got told from a doctor that not only shouldn't she get to try pregnant, the chance is very low already and that she has other medical concerns she needs to handle.
Not something she could handle without a proper care taker though.
Downs syndrome is indeed highly heterogeneous, one of the sadder aspects is the accelerated dementia specifically Alzheimer's.
I've known a few people with Dawn's syndrome and the striking often abrupt and rapid tragectory is shocking.
As much as the slow decline of dementia that it's often incidents months apart before things fall apart. Is sad.
So is it in people with Downs syndrome when at 35 their often bright and cheerful life loving demeanor seems to vanish over the course of a few months.
As I understand it it's because chromosome 21 carries the genes associated with Alzheimer's so they get an extra copy, but also structure issues with the brain, increased risk of sleep apnea and other toxic conditions.
Your argument was not that it's bad for an average person with Down syndrome to have children. It's that they "absolutely shouldn't try to get pregnant, they'll be incapable of looking after the child." My response is that your argument, stated in this extreme way, is factually incorrect.
"Not all car crashes are the same. People sometimes live because they weren't wearing a seatbelt."
The point of these statements is to make an outlier appear as if it is part of the norm. They're bad statements to make, because at heart they are just misleading.
> The point of these statements is to make an outlier appear as if it is part of the norm
Please don't lie about what I wrote. I explicitly said that 117 was "the highest measured IQ of a person with Down syndrome." My own comment says that it is an outlier.
> They're bad statements to make, because at heart they are just misleading
Please note the context of my comment, which was somebody saying that people with Down syndrome are "incapable of looking after the child." I pointed out that this does not apply to all people with Down syndrome, which is not misleading; it's correct.
TBH, I'm not sure what the purpose of your comment was, other than to start a moronic fight that does not need to be fought by lying about what I actually said. I'm not interested in having that fight.
To add a factoid without expressing an opinion: women with Down syndrome are often fertile while men typically are not. The odds of the offspring of a female with trisomy 21 having the same trisomy are 50% theoretically, and between 33-40% in practice due to trisomy embryos having a higher rate of spontaneous miscarriage.
As a molecular biologist I would almost want to investigate if somehow the total expression of, or accessibility of this man's third Chromosome 21 is somehow reduced because this person seems to be very close to normal (2xchr21) humans on the normal to severe Down syndrome -spectrum. I have seen people with 2 times 21 with a more Down syndrome-like face than this man's even.
I know a guy with down syndrome (kid of my parents' friends) and I would have to say he is the happiest person I know. Anytime I see him, he gets a huge smile on his face. He walks over to me and asks me how I am doing. He is such a friendly and cheerful guy. I saw his mom scold him for being disruptive and he got a frown for like 10 seconds and then he returned to being the happiest guy around. To be able to always be that happy is a goal so many of us fail to achieve.
He appears to have a rather mild form of down syndrome.
Now - Down Syndrome is typically called trisomy 21, that
is, you have three copies of chromosome 21 when normally
people have two copies of each chromosome, excluding XY
in regular males (2n = 46 in humans, the diploid
state; naturally females would have XX, whereas humans would normally have XY, unless there would be a genetic change leading to a different ploidy state here as well; normally those with Down Syndrome have regular XX or XY condition for that chromosome, only chromosome 21 has a +1 higher count). If you, however had, look at as many examples as
possible for people with Down Syndrome, you notice a huge
range of differences here. That is, some are affected by
the condition a LOT; others have an almost normal life,
compared to perhaps average to a bit below average "regular"
humans. I also noticed something similar for the progeria
disease. Now, progeria is much more problematic and severe
than Down syndrome; but there is a huge range of people
with different symptoms here. Adalia Rose had a severe
variant and did not survive past age 15, whereas Tiffany
Wedekind has a less severe variant (but also exercises a
lot and tries to keep healthy, despite already facing
significant health problems, at age 48 this year now).
So we see a huge pleiotropy of different genetic conditions.
In most cases exercises, activity and mental mood improves
things, but there are hard caps and limits. For instance,
Adalia could not have done as Tiffany did, simply due the
genetic status being different. It reminds me of the movie
Gattaca (now almost 30 years old) - it's a bit slow and a
bit over-drama, but has great actors and an even greater
take-home message aka "The Underdog who never gives up".
Good to have seen it at the least once, too.
It's absurd is being told you are different dismissively and not constructively. It's easy and convenient to dismiss people based on their needs, but true value lies in including everyone meeting them where they are.
What am I, your chatgpt? I'm in for constructive criticism and for a debate but I won't materialize this just so people can pick on my poorly choosen examples.
I'm not Downs but I have a personality disorder such that I've always felt different. I'm 60 now and yet to meet anyone, M or F, who seems remotely like me. I was married, didn't end well, and have a daughter who doesn't talk to me. I live every day bathed in the knowledge that I am utterly alone in the world, despite having 2 close female friends. It has always been this way. It will always be this way. I try to live a quiet secluded life.
Sometimes when I read resignations like this, I think "who hurt this person, what did they do to feel so shut out?" Then I wonder random possibilities like if the hurt stemmed from a series of escalating misunderstandings or dramas.
One side of my in-law's family works like an extended soap opera. Multi-generational siblings forming cliques where one clique won't talk with/hate-with-a-passion the others for up to a decade then suddenly the ice thaws and they are all raucous friends again and then whole new cliques form over some drama. One family member takes this idiocy especially hard and has now self-excluded from the entire family, we will probably never hear from them again. I liked that guy, sad to see him go!
(I'm guessing "no" but a lot of recognized conditions have huge variance in individuals, so having a recognized personality disorder also isn't a guarantee that there will be others with a similar mindset...)
More importantly, I wish you peace and happiness. It's a difficult hand to be dealt...
Many individuals also have more than one personality disorder. I have a partner with bipolar + borderline + OCPD and a bunch of other stuff. I have a fair few too (borderline and OCPD at least).
Based on a hunch, GP may potentially find similar minds on 4chan
"On the spectrum," here. My mother knew, when I was kid, but never told me. I had to find out, the hard way, in my 40s.
Made me a damn good coder, though.
No one ever told me I was "different." They just kept ghosting me, and shunning me, all my life.
If I had known then, what I know now, I wouldn't have taken it so personally, and wouldn't have spent thousands of dollars, trying to fix something that can't be fixed.
I was lucky enough to know that all I need is presence in my life. I don't really care for interaction or romance.
Remember that having children, getting married, living a fulfilling life is just the status quo and not the path your life has take. Be or do whatever makes you happy as long as you're not harming others.
Might be a bit late, but it's all about the ride and leaving something behind for others to enjoy is a nice extra.
Well - many people with a personality disorder don't even have kids, so perhaps you did something better than these; or, different, if better does not serve here.
I would not want to give any advice to anyone about their own personal lives, but surely the story you show here must be incomplete. Unless your daughter never spoke to you to begin with.
Even for people without any disorder, communication is not always trivial - some find it easy, others find it hard. For me it is hugely difficult to do small-talk and fake-talk. My brain does not work like that. Whereas if something is interesting, I can talk and listen easily.
I can't speak for the commenter, but many people (arguably, most?) manage to work around their differences to fit into society, if not make a relationship work for at least a while (see also "masking").
But anecdotal (friends, family, colleagues, myself), these coping mechanisms aren't permanent; masking constantly once you're living with someone else is pretty much impossible, fatigue/burnout kicks in often in people's 30s, and a lot of coping mechanisms people learn as kids are no longer effective or desirable as adults (often known as neuroses). Then there's attachment issues, also picked up as children. These may apply to everyone, but they're exacerbated for people with personality disorders, mental health issues and/or neurodiversity.
Figuring out what are "built in" / genetic / medical conditions, unhealthy coping mechanisms or trauma responses is a long journey that a lot of people are going through.
> a word for a person with a learning disability (= a condition that can have an effect on someone's ability to learn easily), which was used by doctors in the past but is now extremely offensive
Yes, in that context it's offensive, I agree. But when people use that as a slur with something without a learning disability they aren't literally talking about or referring to a learning disability so it's a different context
> But because he has Down syndrome, someone told him he’s different.
Yes, and him being different (in a negative way) is a statement of fact. One shouldn't be going around shouting this into the faces of people with Down's, but we as a society have to stop pretending low IQ is something to be celebrated or disregarded in people.
Low intelligence as an attribute (not the unfortunate person saddled with it) ought to be universally stigmatised and we should be doing our best to eradicate it from the population. That certainly doesn't mean we should go out of our way to disrespect or dehumanise stupid people to their faces, but there has to be some sort of policy nuance in both treating them with respect while also calling a spade a spade and acknowledging that certain traits and conditions would be better off not existing in the population.
I don't know why people don't understand this, but something being true doesn't mean it can't also be hurtful, and it doesn't mean it has to be said. Gabe clearly already knows that he is different; there's absolutely no point in telling him this, other than to hurt him.
I look at it through my parenting lens. You can’t just ignore it. You have to prepare them for a harsh world where they will constantly hear it, feel it, and possibly worse. I’d feel my role would be to fully acknowledge it, overly embrace it, almost to a theatrical level. This would be privately in the home and while they’re young but the idea is to make them understand their difference has lots of benefits/positives to it. It’s kind of a super power. So they have a positive self image and relationship with their difference before they have to deal with the external stuff. Then, of course, they’ll still get upset when a name caller or bully confronts them but you can lean on the foundation of this is just who you are and who you are is awesome. It still hurts ofc but that’s inevitable in this world, how you respond is controllable. Someone simply vocalizing a fact shouldn’t ruin their day if they’ve been properly “coached” to have the fortitude.
I agree with your comment in general, except this one point: you sometimes absolutely can just ignore it. The instance from the article is one such example.
There's a gulf of difference between burying/hiding truth and going out of your way to unnecessarily bring up a fact that serves no good purpose in context.
All of which to say, you can affirm it by being a dick, but that's not the only way to acknowledge the truth. Nor should we pretend the facts aren't there.
We are all different, and have different challenges in life to overcome. That’s life, as they say. You, for instance, have your prejudges to struggle with.
The question is how we all deal with these challenges, and how we meet people who are different from ourselves. I think it is important that we don’t put each other down, or judge based on our assumptions of what a person’s differences entails. Meeting people as individuals, and imagine other people complexly. And cheering on each other as we each overcome our challenges.
“We’re different, we’re the same” is a sesame street illustrated book that would clear things up quickly. Helped us explain the concept to our then 3 year old. Reinforcing the idea of celebrating the differences, we all have them, and not judging anyone else for theirs.
@avazhi Intelligence is a highly multidimensional thing. IQ as a general measure of intelligence is an antiquated concept. As such, eradicating "low intelligence" as you put it here is ill specified - what type of low intelligence? In what context?
More importantly, as AI models improve I think you will run into personal trouble by attaching your self-worth to your intelligence. For all of us "smart people", this aspect of our being will become increasingly insignificant.
But setting all this aside, ranking people based on any measure is a sure way to end up lonely and miserable. Giving love and respect to people based on their rank is a silly concept in my mind and I doubt you think this either.
Are you sure? It always seemed pretty reductive to me to try and take something as complicated as intelligence and reduce it down to a single-dimensional number. Most people consider me "smart", but that's only because I'm pretty good at math. I'm pretty much an idiot at anything else. Even the SAT breaks things down into different categories.
Also, given the fact that you can study for IQ tests, I don't really think I agree at all that it's some immutable and objective fact of behavioral science.
Replace the word "study" with the word "cheat" and it makes more sense. You aren't SUPPOSED to study for an IQ test.
What you are seeing is that if you cheat it helps a little bit. That's not an argument for OR against them in general, except maybe to say that they should be more resistant to this type of cheating.
Even if you're not explicitly "cheating", if your job is more primed around pattern recognition and the like, you might still perform better on an IQ test than someone who works driving trucks. This doesn't imply that the truck driver is inherently more stupid than the person who reads patterns all day.
Sure, but If you can improve your IQ by studying, that suggests that this number isn't some hyper-objective thing we should treat as immutable or that it's even a true reflection of the person's total cognitive abilities.
I'm not saying that IQ is useless or anything, just that we should take the results with an appropriately large grain of salt.
> Reading the room helps, which you seem pretty bad at.
If I ever start caring what random people like you think about a particular subject, let alone a subject about which I already have a strong opinion, I'll be sure to let you know, ramon156.
Every person has differences from every other people. Including monozygotic twins. Clearly what’s being referred to here is using “different” dismissively.
This kind of feels uncomfortably close to eugenics talking points. I'm not saying that you're suggesting we do eugenics, because I don't think that's what you're trying to say, but trying to "eradicate low intelligence from the population" feels pretty similar to the "Three generations of imbeciles are enough" point from Justice Oliver Wendell Holmes Jr.
Ultimately, I think there are more aspects of "value" than "being smart".
Growing up my mom worked closely with children/young adults with disabilities so I was exposed to people with down syndrome from a very young age and I am so incredibly grateful for that. Today I just try my best to keep her work going.
https://www.youtube.com/watch?v=9dCzejMK9jU
This is the non-profit:
https://www.storiesmadewithlove.com
"In Iceland, upwards of 85 per cent of women elect to have prenatal testing, and close to 100 per cent of pregnancies where Down syndrome is diagnosed are terminated.
Denmark isn't far behind, with a termination rate of 98 per cent."
Unfortuna another documentary about people with Down Syndrome were more heartbreaking. A young girl got told from a doctor that not only shouldn't she get to try pregnant, the chance is very low already and that she has other medical concerns she needs to handle.
Not something she could handle without a proper care taker though.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3707311/
Having said that, men with Down syndrome are generally infertile anyway.
I've known a few people with Dawn's syndrome and the striking often abrupt and rapid tragectory is shocking.
As much as the slow decline of dementia that it's often incidents months apart before things fall apart. Is sad.
So is it in people with Downs syndrome when at 35 their often bright and cheerful life loving demeanor seems to vanish over the course of a few months.
As I understand it it's because chromosome 21 carries the genes associated with Alzheimer's so they get an extra copy, but also structure issues with the brain, increased risk of sleep apnea and other toxic conditions.
The point of these statements is to make an outlier appear as if it is part of the norm. They're bad statements to make, because at heart they are just misleading.
Please don't lie about what I wrote. I explicitly said that 117 was "the highest measured IQ of a person with Down syndrome." My own comment says that it is an outlier.
> They're bad statements to make, because at heart they are just misleading
Please note the context of my comment, which was somebody saying that people with Down syndrome are "incapable of looking after the child." I pointed out that this does not apply to all people with Down syndrome, which is not misleading; it's correct.
TBH, I'm not sure what the purpose of your comment was, other than to start a moronic fight that does not need to be fought by lying about what I actually said. I'm not interested in having that fight.
(Not to say that anything you say is incorrect).
Now - Down Syndrome is typically called trisomy 21, that is, you have three copies of chromosome 21 when normally people have two copies of each chromosome, excluding XY in regular males (2n = 46 in humans, the diploid state; naturally females would have XX, whereas humans would normally have XY, unless there would be a genetic change leading to a different ploidy state here as well; normally those with Down Syndrome have regular XX or XY condition for that chromosome, only chromosome 21 has a +1 higher count). If you, however had, look at as many examples as possible for people with Down Syndrome, you notice a huge range of differences here. That is, some are affected by the condition a LOT; others have an almost normal life, compared to perhaps average to a bit below average "regular" humans. I also noticed something similar for the progeria disease. Now, progeria is much more problematic and severe than Down syndrome; but there is a huge range of people with different symptoms here. Adalia Rose had a severe variant and did not survive past age 15, whereas Tiffany Wedekind has a less severe variant (but also exercises a lot and tries to keep healthy, despite already facing significant health problems, at age 48 this year now).
So we see a huge pleiotropy of different genetic conditions. In most cases exercises, activity and mental mood improves things, but there are hard caps and limits. For instance, Adalia could not have done as Tiffany did, simply due the genetic status being different. It reminds me of the movie Gattaca (now almost 30 years old) - it's a bit slow and a bit over-drama, but has great actors and an even greater take-home message aka "The Underdog who never gives up". Good to have seen it at the least once, too.
Down Syndrome is a quite serious genetic abnormality, pretending it's not with silly statements like "someone told him he's different" is absurd.
Give examples
> I try to live a quiet secluded life.
Sometimes when I read resignations like this, I think "who hurt this person, what did they do to feel so shut out?" Then I wonder random possibilities like if the hurt stemmed from a series of escalating misunderstandings or dramas.
One side of my in-law's family works like an extended soap opera. Multi-generational siblings forming cliques where one clique won't talk with/hate-with-a-passion the others for up to a decade then suddenly the ice thaws and they are all raucous friends again and then whole new cliques form over some drama. One family member takes this idiocy especially hard and has now self-excluded from the entire family, we will probably never hear from them again. I liked that guy, sad to see him go!
(I'm guessing "no" but a lot of recognized conditions have huge variance in individuals, so having a recognized personality disorder also isn't a guarantee that there will be others with a similar mindset...)
More importantly, I wish you peace and happiness. It's a difficult hand to be dealt...
Based on a hunch, GP may potentially find similar minds on 4chan
Made me a damn good coder, though.
No one ever told me I was "different." They just kept ghosting me, and shunning me, all my life.
If I had known then, what I know now, I wouldn't have taken it so personally, and wouldn't have spent thousands of dollars, trying to fix something that can't be fixed.
I wish you well and hope you find your Tan Elbrun.
Remember that having children, getting married, living a fulfilling life is just the status quo and not the path your life has take. Be or do whatever makes you happy as long as you're not harming others.
Might be a bit late, but it's all about the ride and leaving something behind for others to enjoy is a nice extra.
visit new york city's lower east side
everyone here is different :)
I would not want to give any advice to anyone about their own personal lives, but surely the story you show here must be incomplete. Unless your daughter never spoke to you to begin with.
Even for people without any disorder, communication is not always trivial - some find it easy, others find it hard. For me it is hugely difficult to do small-talk and fake-talk. My brain does not work like that. Whereas if something is interesting, I can talk and listen easily.
But anecdotal (friends, family, colleagues, myself), these coping mechanisms aren't permanent; masking constantly once you're living with someone else is pretty much impossible, fatigue/burnout kicks in often in people's 30s, and a lot of coping mechanisms people learn as kids are no longer effective or desirable as adults (often known as neuroses). Then there's attachment issues, also picked up as children. These may apply to everyone, but they're exacerbated for people with personality disorders, mental health issues and/or neurodiversity.
Figuring out what are "built in" / genetic / medical conditions, unhealthy coping mechanisms or trauma responses is a long journey that a lot of people are going through.
Yes, in that context it's offensive, I agree. But when people use that as a slur with something without a learning disability they aren't literally talking about or referring to a learning disability so it's a different context
Yes, and him being different (in a negative way) is a statement of fact. One shouldn't be going around shouting this into the faces of people with Down's, but we as a society have to stop pretending low IQ is something to be celebrated or disregarded in people.
Low intelligence as an attribute (not the unfortunate person saddled with it) ought to be universally stigmatised and we should be doing our best to eradicate it from the population. That certainly doesn't mean we should go out of our way to disrespect or dehumanise stupid people to their faces, but there has to be some sort of policy nuance in both treating them with respect while also calling a spade a spade and acknowledging that certain traits and conditions would be better off not existing in the population.
I agree with your comment in general, except this one point: you sometimes absolutely can just ignore it. The instance from the article is one such example.
All of which to say, you can affirm it by being a dick, but that's not the only way to acknowledge the truth. Nor should we pretend the facts aren't there.
The question is how we all deal with these challenges, and how we meet people who are different from ourselves. I think it is important that we don’t put each other down, or judge based on our assumptions of what a person’s differences entails. Meeting people as individuals, and imagine other people complexly. And cheering on each other as we each overcome our challenges.
More importantly, as AI models improve I think you will run into personal trouble by attaching your self-worth to your intelligence. For all of us "smart people", this aspect of our being will become increasingly insignificant.
But setting all this aside, ranking people based on any measure is a sure way to end up lonely and miserable. Giving love and respect to people based on their rank is a silly concept in my mind and I doubt you think this either.
Blessings on your journey.
Yeah, this isn't remotely true. It's probably the most reliable trait in all of behavioural science.
Also, given the fact that you can study for IQ tests, I don't really think I agree at all that it's some immutable and objective fact of behavioral science.
What you are seeing is that if you cheat it helps a little bit. That's not an argument for OR against them in general, except maybe to say that they should be more resistant to this type of cheating.
And yes you can study for IQ tests, but I could study basketball and while I might get better, I'm never playing in the NBA.
https://www.aporiamagazine.com/p/the-bbc-tries-to-debunk-iq
I'm not saying that IQ is useless or anything, just that we should take the results with an appropriately large grain of salt.
Something can be true, and you don't need to point that out
If I ever start caring what random people like you think about a particular subject, let alone a subject about which I already have a strong opinion, I'll be sure to let you know, ramon156.
Ultimately, I think there are more aspects of "value" than "being smart".