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At Home with Down Syndrome (2008)

thenewatlantis.com

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Re: At Home with Down Syndrome (2008)

#81

Post by canam »

kingsloi wrote: post #23

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…

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!

Re: At Home with Down Syndrome (2008)

#82

Post by dang »

C06aka wrote: post #79
dang wrote: post #75

Earlier quoted context omitted.

"You're just biased" is the first retort of every troll. Actually my bias is closer to your view than to the opposite. That's not the issue here. The issue is that you're coming in with guns blazing, lashing out and firing condemnations at the side you have a problem with. Not only is this not helpful, it does violence to the thread. You're coming in to a room (let's call it) of human beings who have dealt with, and…

Then be specific in your criticism. There is a very clear sugar coating of terminology that I think is worth pointing out. There are no guns blazing. I struggle to understand what you take issue with, if not my point.

If you don't see how https://news.ycombinator.com/item?id=26591334 is coming into the thread with guns blazing (I mean rhetorically, of course), I'm not sure what else to say, other than please try to imagine yourself into the position of whoever you're condemning and ask yourself if that's likely to help or make things worse. When you do this, you're rating the venting of your own frustration higher than anything or anyone else in the discussion. That's a contradiction. The opinion content of your posts is about defending the vulnerable, but your action in the thread is to hurt people who are present and be selfish towards them.

One of my teachers was a wise man who, sadly for those who knew him, died recently. In the last conversation I got to have with him, he said something I found incredible: "The connection is more important than the content." I've been repeating that to myself for a few months now: The connection is more important than the content. The connection is more important than the content. If nothing else that I'm saying makes sense, maybe try pondering that.

Re: At Home with Down Syndrome (2008)

#83

Post by scpedicini »

ben_w wrote: post #69
slothtrop wrote: post #56

Earlier quoted context omitted.

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.

Re: At Home with Down Syndrome (2008)

#84

Post by anthk »

slothtrop wrote: post #58
nvarsj wrote: post #6

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…

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.

Re: At Home with Down Syndrome (2008)

#85

Post by hobbyjogger »

yhoneycomb wrote: post #21
Daub wrote: post #11

I worked in a residential community consisting of many young people with various disabilities. Most of these had Down’s syndrome. From the OP... > 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. Cert…

Just curious could you give examples of them being witty?

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.

Re: At Home with Down Syndrome (2008)

#86

Post by C06aka »

scpedicini wrote: post #80
C06aka wrote: post #76

Earlier quoted context omitted.

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 c…

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.

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.

Re: At Home with Down Syndrome (2008)

#87

Post by nemo44x »

robertlagrant wrote: post #8

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…

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.

Re: At Home with Down Syndrome (2008)

#88

Post by YeGoblynQueenne »

dang wrote: post #65
blendergeek wrote: post #64

Earlier quoted context omitted.

While you may find the statement humorous, it uses Down Syndrome as a form of an insult. This could be highly offensive both to people with Down Syndrome and to their friends and family.

It's a tradeoff. I get the intention, but in the long run this way of thinking does more harm than good. It compounds into the bureaucratic kind of discourse that tries to force people to be good, or to hide badness behind rigid rules. The heart doesn't function this way, and it's the heart that we need when relating to each other and when dealing with profound human issues like the ones in this thread. Trying to san…

I like your analogy of an immune system etc. and I bet you're one of the people on the internets who have thought the hardest about these issues. But to be honest in this case I think the OP was just being mean to you.

Re: At Home with Down Syndrome (2008)

#89

Post by 2lwxxtj »

C06aka wrote: post #76
scpedicini wrote: post #74

Earlier quoted context omitted.

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.

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 c…

People with Down Syndrome are not in any sense a nation or national group. It is not applicable.

Re: At Home with Down Syndrome (2008)

#90

Post by nemo44x »

patwolf wrote: post #19

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.

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.

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