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Comment by lotyrin | Hacker News Reader

Those sound like capitalism problems, not medical ones, to be probably too honest (HN doesn't generally vibe with class consciousness because so many tech bros sell out or dream of selling out one day, but). Society can afford to have support systems for people with disabilities and their supportive family, as evidenced by the fact that it is currently doing so indirectly (by paying enough for the husband's labor that he can make finances work for the three of them). The fact that the husband in your scenario bears all of that for everyone else (and it creates an unhealthy dependency in their relationship) because we only value the under classes for their contribution of labor is the problem, and is solvable.

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Forget the economic aspect of it, what about the emotional and mental cost something like Downs Syndrome imparts, for both parents? I can't imagine any parent hoping they will have a child that will be utterly dependent on them for their entire lives. It's not at all to say they do not love their children as they are, but nobody seeks to become a parent hoping their child will have severe developmental disabilities. While some may choose not to terminate the pregnancy, I think most parents would think twice before conceiving if they knew with reasonable certainty before the fact.

Why do you think that people with Down syndrome are “utterly dependent on [their parents] for their entire lives”? All children come with a severe “emotional and mental cost”, have you seen the world today??

We knew with (well beyond) reasonable certainty that our son would have Down syndrome and chose to continue the pregnancy. We’re not religious and not part of any pro-birth political cohort; it was absolutely an affirmative choice.

Because I grew up across the street from a forty-year-old woman with it. She will be dependent on her parents for the rest of her life. Still lives there. They make the best of it, but frankly, their lives pretty much suck (though she seems very happy with hers). They are no longer people but first and foremost caregivers. All parents have a stage of that but it’s temporary.

I’d imagine some downs patients have more or less functionality and independence, but seems pretty much the whole distribution is just too low for them to be independent.

If y’all are happy, it’s not really my place to comment on that. But this is one of the things that makes me nervous about having kids in future.

The issue isn’t that like all kids they come with emotional complications and caregiving. The issue is I saw these neighbors spend literally two decades trapped in Groundhog Day. They never progressed past it. Well into retirement and they were stuck in this. I’m not sure if they’ve passed now or where she is, but if they’re still alive, I’d guess they’re still in Groundhog Day. Same thing forever.

Years ago, my uncle worked in a home with a group of people with these sorts of conditions. Many were downs and needed help but families would or couldn’t provide it. It’s not just needing more attention, you have to change the way you live. Like one day, two other guys were taking them on a trip somewhere. On the way back they stop for gas, one guys filling up, the other runs in and grabs a slurpee. One of the downs guys says he wants a slurpee (he’s not supposed to have them for whatever reason.) no, can’t have that. But he wants a slurpee. Repeat ad infinitum. Winds up they’re a block away driving and this guy tries to jump out of the car to run back and get a slurpee. Uncle explained to slurpee guy later you literally can’t get anything without giving it to everyone. It’s like kindergarten logic. You have to live that way. Every day, forever.

I have another reply in this tree talking about outcomes and independence being much worse not even all that long ago. I won’t repeat it all here but it squares with what you observed in an older neighbor growing up.

Also: did they tell you they were miserable or felt stuck in Groundhog Day? If not, then it’s not a safe assumption. AFAIK many caretakers and family members report satisfaction with their lives despite the added complications. (Maybe your neighbors really were miserable, and if so, just know it’s not the norm anymore.)

The early genetic testing for Down syndrome is pretty accurate now. If it’s still a major worry for you about having kids, get the testing done early enough to terminate. I strongly hope that no one terminates out of ignorance about the realities - both positive and negative - of Down syndrome, but have no problem at all with informed choices.

People with Down syndrome aren’t “downs” or “downs patients”, though. It’s easy to dismiss this as language policing or, as another thread hinted at, performative. But the words we use and how we view the world are part of a feedback loop on each other. Synecdoche-izing people as merely a medical diagnosis colors whether society treats them as full members or not. And unlike, say, the Deaf or autism communities, it’s not currently a subculture or something that many people with Down syndrome identify as.

As an internet stranger, I’m asking folks to consider using “person with DS” instead of “DS patient/person/etc”.

In a better-constructed society, that child isn't dependent upon them alone their entire lives. "It takes a village" isn't just about things like education.

(I observe people struggling to care for elderly parents while also trying to be highly-successful rugged individuals and I'm struck by hoe, for want of a better phrase, anti-human that self-made goal is. Real people need help. In all stages of their lives. We have convinced ourselves that need is weakness).

I wonder how familiar you are with the reality of a life with DS today. Certainly some children with DS are dependent their entire lives, but others marry, have jobs, support themselves, teach others, etc. And on the whole, both individuals with DS and their family members report higher levels of happiness and satisfaction with their lives than others.

I can say with absolute sincerity that if I happen to conceive a child with DS, I will feel like I won the genetic lottery. Not saying you do or should have the same values, but dismissing the experience of the families who do have these children in them because you have a different set of values that would make it undesirable for you isn't fair either.

HN doesn't generally vibe with class consciousness because their high income makes them far more aligned with the "capitalist class" just like how a small business owner is much more aligned with the worker class despite being workers and business owners respectively, since it turns out that people do not value their theoretical "class" since it has no relevance to their life.

No. They want to believe that, but the reality is that even in this little bubble (with a median income multiple times that of general population's median), anyone that works for a living is far more likely to experience homelessness than they are to join economic elites. Sure, you're able to be comfortable because unlike most of the economy you are compensated well, but you should still have worker solidarity (and humility).

Let me put it another way by making it less personal to tech: Hollywood celebrities, wildly successful people that basically everyone knows their names and faces, are still workers. Million dollar contracts BUT only if they play ball with the system and don't get themselves blacklisted for being too political or being too inconvenient saying no too many times to staring in soulless Disney slop, or whatever. They can retire early on that kind of money, get to a kind of stable non-participant status, sure, they can place pressure on their industry and on society to change to some degree, but they'll never call the shots because they don't write the checks.

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