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At Home with Down Syndrome (2008)

thenewatlantis.com

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Re: At Home with Down Syndrome (2008)

#11

Post by Daub »

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. Certainly Low muscle tone. This also signifies incredible flexibility. ...Seeing a 40 year old man with this condition bend over and place both his palms on the floor without bending his knees. Try it now! I dare you!

But ultimately these folk will always need institutional or family based care, or close oversight, for the rest of their lives. What bugs me is ‘stories of success’, like the young girl with downs who is a model. This does no one any favor, instead placing unreal expectations on them.

This residential community was very closed, almost like a religious retreat, or a very small village. In many ways it was the perfect place for such people. They held a valuable place in our lives, and were ‘useful’ in the way we all strive to be. In a more modern setting, their lives are more difficult.

Re: At Home with Down Syndrome (2008)

#12

Post by danw1979 »

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…

That 90% may move much closer to 100% with the wider availability of the maternal blood test screening for foetal trisonomies (branded “Harmony test” in the UK) which is supposedly very accurate.

My wife opted to have this test for two of her pregnancies at about 13 weeks, both negative.

It’s impossible to say what we would have done given a positive result. Everything I hear about the way such a diagnosis is handled by the medical profession suggests that expectant parents will be steered down the route of abortion.

Re: At Home with Down Syndrome (2008)

#14

Post by OskarS »

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…

I agree that that stat is unsettling, but I really can’t judge the people making this choice. It’s an impossibly hard situation to be put in, and you can’t be judgmental. Decisions like these are never easy, and never taken lightly by anyone.

Re: At Home with Down Syndrome (2008)

#15

Post by farrelle25 »

WrtCdEvrydy wrote: post #9
farrelle25 wrote: post #3

In 2006 I worked for six weeks in a residential home for people with disabilities - some had Down Syndrome. Even though the work was stressful & I've had many jobs since, I still remember each resident so clearly. I don't know why really... they've always stayed in my mind. There was one man in his 60s with Down Syndrome and he did the same routine, slowly each day... but so unhurried, and present... it took him an h…

Are you frantic because of a specific reason? I was frantic when I was the sole breadwinner for my family, my brother is disabled and my grandmother had alzheimer's. As things improved with my family, I was able to move us into a larger home and I was able to relax a bit more.

Fair play - it must have been tough with that pressure to support your family...

I'm a bit frantic for more mundane reasons - suffer from an anxiety condition that triggers sometimes. It's ironic, working in that home with the residents brought my own condition to the surface. I got diagnosed soon afterwards...

Thankfully life more peaceful now... and I'm trying not to be as rushed ...

Re: At Home with Down Syndrome (2008)

#16

Post by smeej »

I've known and loved a delightful list of people with Down Syndrome throughout my life. My late sister also had such a special place in her heart for them. The bonus chromosome certainly seems to do something beautiful to all the rest!

As the article mentioned, though, there is often a risk of congenital heart defects, and particularly in developing countries, obtaining heart surgery within the first few years can be prohibitively expensive, and end up cutting lives short.

I've recently become a supporter of Hearts of Joy International[0], which has partnered with surgeons in India and helps mothers and their little ones travel from Uganda and the Philippines to get this lifesaving surgery.

I'm not any kind of affiliate or anything, just an enthusiastic supporter!

[0] https://www.heartsofjoyinternational.com/

Re: At Home with Down Syndrome (2008)

#17

Post by Jabbles »

This may be related to the recent controversy over RMS at the FSF foundation:

https://rms-open-letter.github.io/appendix.html

In 2015 and 2016 RMS made three posts on his website about Down’s syndrome.

- He recommended that, should someone find out they are pregnant and the child tests positive for Down’s syndrome “the right course of action for the woman is to terminate the pregnancy.”

- He referred to people deciding to “carry fetuses with Down’s syndrome to term” as “perverse” and said that there is “nothing virtuous” in “[increasing] the number of people that have Down’s syndrome.”

- He also said that “when a fetus has Down’s syndrome, you should abort it and try again.”

- On at least one occasion RMS likened having a child with Down’s syndrome to having a pet.

The whole point of the pro-choice movement is to allow the woman to make her own decision. This is a really common choice, recommended by most medical staff (see other comments). Stating this opinion (even as a man) should not be more controversial than the typical abortion, which I presume is not for fetal abnormalities.

Presenting your choice as the only moral option is rude.

Comparing people to animals is horrible.

Re: At Home with Down Syndrome (2008)

#19

Post by patwolf »

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.

Re: At Home with Down Syndrome (2008)

#20

Post by nicolas_t »

Jabbles wrote: post #17

This may be related to the recent controversy over RMS at the FSF foundation: https://rms-open-letter.github.io/appendix.html In 2015 and 2016 RMS made three posts on his website about Down’s syndrome. - He recommended that, should someone find out they are pregnant and the child tests positive for Down’s syndrome “the right course of action for the woman is to terminate the pregnancy.” - He referred to people decidi…

RMS lacks the self censorship and political intuition to not say what many think but know not to say. I disagree with him that " having a child with Down’s syndrome to having a pet." but that's because I've had experience with a neighbor with down syndrome. However, I know many people think that, they just are politically savvy enough not to say it.

It's unfortunate that in today's society, people condemn people like RMS who are not neurotypical for not behaving neurotypically and try to cancel him while at the same time, those same people claim to celebrate diversity.

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