Life with Down Syndrome
esquire.com
esquire.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."
Oh, indeed. And the male half as well.
The "male half" has no legal say in the matter, s'not their body.
Some of them actively publicize that people with Down's lead happy, healthy, and independent lives, without significant support. (As we see Gabe does in the article.) They generally stay away from the moral debate.
For people who follow the abortion debate in the US, when people say "as long as it's not used for Eugenics," what they really mean is that they are ok with abortion as long as it's not used to abort Down's fetuses.
> 38% said it should be illegal in all or most cases
https://www.pewresearch.org/short-reads/2026/06/17/what-the-...
https://www.youtube.com/watch?v=9dCzejMK9jU
This is the non-profit:
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.
This makes some trisomies survivable, e.g., trisomy 16 which is otherwise incompatible with live birth.
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.
(Not to say that anything you say is incorrect).
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.
But no one counters "You should always wear your seatbelt" with "Some people have lived because they didn't have one on". It's a meaningless statement that doesn't change anything about the original statement.
One of the things I like is the article really gets through the facade into understanding who Gabe really is. It doesn't focus on quirks, and instead humanizes Gabe.
I have two people in my extended family with Down Syndrome. It's not the "bro" version that Shane Gillis talks about or the TV-friendly version like on Life Goes On.
They are both severely impaired, nonverbal, and demand constant attention. I only see them a few times per year and even within those isolated windows, I find it exhausting.
Some of the stuff would sound cute if done once or twice, but when it's every 2-3 minutes all day long... it's hard.
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'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
As for plurality, it is quite fascinating indeed <3
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.
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 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!
Thoughts in your own head can erode very deep grooves in your mind that only direct more thoughts in the same direction. Letting someone look in and simply point out those tracks is theraputic on it's own even if it's easy to dismiss talk therapy as simply just talking.
Reality is just whatever your brain synthesizes from your senses, and that means you're never perceiving any sort of objective reality. We often think we know where those grooves are so we can avoid them, despite the fact that we're standing in deepest part of the proverbial canyon and simply pointing at scratches on the rockbed. We're predisposed to think in grooves we often think in, and our perception of reality resets to reflect that pattern.
A good therapist won't challenge "I am utterly alone in the world", because that's one of those scratches you already know "feels like a sad thought" when you think it. You have a lot of proof that it's true, but I'd bet you still recognize it as something hurtful to think about. Instead, they'd want to figure out what the last scratch was that deepened the floor of the canyon. Some thought/belief that you knew was hurtful and then was proven to be reality to you. Anyone can do that with you (friend, family), but a therapist requires no emotional reciprocation because you're paying them. It's worth it.
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.
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.
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.
To be clear, I'm saying it can't be ignored as a parent. Gabe can ignore it, but that usually requires some proper preparation and understanding of how to deal with the emotions it may generate when someone says it. Hence the parenting part.
Which is what was being discussed in this thread.
That’s from top of thread, and what I’m disagreeing with. My stance is he should be told so he can understand, process, ask questions, be supported, in a safe positive environment.
Never discussing it is the same as ignoring it and he will notice or be told by someone. It might just be some innocent 3 year old on a playground, but he will be told. But you’re letting him deal with that in the moment unprepared if you don’t proactively address it as a parent. All kinds of bad could come from that.
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.
Something can be true, and you don't need to point that out
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.
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.
I'm not saying that IQ is useless or anything, just that we should take the results with an appropriately large grain of salt.
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.
About half of general intelligence is this correlation between all the different types. Modern IQ tests measure something like 15 types, and pattern recognition is one of them. It's the correlation between all the types that really matters.
It is strongly linked to career success, educational attainment, and many other things in life that are typically regarded as positive outcomes. Lower g-factors correlate strongly with poor outcomes.
Regardless of what we're measuring (and if it can be improved with various interventions) it is something we can measure, seems to be heritable, and is strongly correlated with positive outcomes.
The GP's phrasing was harsh, but he's not wrong for insisting that good and bad are not the same thing.
Below average intelligence is something that should be fixed, not celebrated, and it's not just some cute and quirky Sesame Street "We're all different, but the same" thing. It's a disorder, like Depression or Schizophrenia. It should be treated, and ideally eradicated. People who have it should not be stigmatized for it, but they SHOULD be treated and at least taught coping skills - as they would be with any other disability.
That said, even in the article you linked it does not appear to be a universally accepted truth.
Ultimately, I think there are more aspects of "value" than "being smart".