Why do you think people with Down syndrome can’t “achieve independence and a life of their own”? And what makes you think they, or their families, see their existence as suffering?

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jjcob 2 days ago | parent | next [-]

Most people with Down Syndrome require a huge support network to achieve anything resembling "independence".

Their parents (usually the mother) will end up spending all of their time to care for the kid. Other kids in the family will either be neglected or will have to help care for their disabled sibling.

When they leave home, they usually move to care facilities were multiple employees care for them.

Caring for people with Down Syndrome is a huge burden both on the individual and on society. It's something we do because we believe that everyone has a right to a fulfilled life, and because humans are generally compassionate creatures.

But if we have the choice, 95% of us chose not to have a baby with down syndrome.

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orbisvicis 2 days ago | parent | prev | next [-]

> Why do you think people with Down syndrome can’t “achieve independence and a life of their own”?

Based on the anecdotes here. 5 in support, 3 against as of now. I wasn't expecting such a spread, so I did a bit of research. The cognitive problems, though possibly quite severe are not so as frequently as I had assumed. Whereas the medical complications tend to be commonly nasty. As for independence there's a lot of advocacy material claiming so, but reading between the lines and in conjunction with reddit and quota testimony, I suspect very few qualify.

> And what makes you think they, or their families, see their existence as suffering?

I'm sorry, what? Those with Down's Syndrome are people, with all the emotions and experiences that entails. If they are supported, nurtured and loved then they'll lead correspondingly happy lives.

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vtbassmatt 2 days ago | parent [-]

> I'm sorry, what? Those with Down's Syndrome are people, with all the emotions and experiences that entails. If they are supported, nurtured and loved then they'll lead correspondingly happy lives.

Heartily agree! My question was a reaction to the last line in the parent comment:

> If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal?

I’m sorry that I didn’t make that as clear as I could have.

* * *

I’ve seen the negativity on Reddit and, now, here. Some of that is based on historical reality: the standards for medical care and early intervention have dramatically improved outcomes for people with DS even just in my lifetime. It turns out that if you don’t believe a child is capable of, say, reading, then you don’t bother teaching them to read. This becomes a self-fulfilling diagnosis. And not too long ago, many kids with DS had inner ear damage from undetected ear infections, leading to hearing loss and difficulty communicating. As we learn more about what’s possible and what needs monitoring in kids with DS, long-term outcomes get better and better.

This recent (~last 20-40 years) improvement means there’s still a visible cohort of people who didn’t receive that level of care and probably are less independent. But I’d also suggest that there’s sample bias in anecdotes on Reddit. Like with product reviews: the vast majority in the middle don’t bother to post, and negative experiences get more emotional traction than positive ones.

The range of associated medical conditions is long and scary. But no individual gets all, or even many, of those conditions. And a lot of the scariest/most complicated stuff is correctable early post-natal (heart surgeries are common) or end of life (early appearance of dementia is unfortunately still the likely outcome for most people with DS). Medicine continues to make progress, and I think outcomes will continue to dramatically improve.

	▲	orbisvicis 2 days ago \| parent [-]
		You may not agree with my original point. Raising someone with Down's Syndrome is a high risk venture requiring significant capital (physical therapy, speech therapy, medical interventions and surgeries), a large support network (boots on the ground), and an endowment for continuing care once the original parent is no longer capable. Most people cannot afford to provide this, in which case the experience becomes an ordeal for everyone involved, parent and child. If a parent decides to proceed regardless and forewarned then they are possibly being emotionally selfish and a perhaps would be better suited with a pet rather than a child.

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vicnov 2 days ago | parent | prev | next [-]

because alot of times when they do it makes the news and because when it does happen.. it usually happens in (very few) "first world countries"?

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hypertele-Xii 2 days ago | parent | prev [-]

The government taxes you to pay me to assist these people.

As for suffering... their families DON'T care for them. That's why I'm paid to do it for them. People avoid what causes them suffering, so the absence of voluntary caretakers is evidence enough.