[HN Gopher] At Home with Down Syndrome (2008)
___________________________________________________________________
At Home with Down Syndrome (2008)
Author : isallthings
Score : 104 points
Date : 2021-03-25 21:22 UTC (1 days ago)
(HTM) web link (www.thenewatlantis.com)
(TXT) w3m dump (www.thenewatlantis.com)
| hycaria wrote:
| Why is everyone pretending Down syndrome is great ? Sure some
| people manage to live a pretty independent life but other are
| rather limited. I don't understand why we should praise people
| that decide to raise handicapped children, considering how much
| care they require from society and the dramatic problems that
| will come with aging parents. There's a reason for the 90%...
|
| Also I am creeped out by the grunting almost non verbal ones,
| socially inapt sometimes to the point of masturbating in public.
| Not all are happy go lucky witty individuals like these comments
| seem to pretend.
| bearsnowstorm wrote:
| The documentary The Crash Reel is about a snowboarder who gets a
| traumatic brain injury, but the comments of one of his brothers
| (who has Down's syndrome) on his life and on his family form part
| of it - really interesting to watch
| robertlagrant wrote:
| 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 be honest she's so amazing that I can't imagine viewing
| her differently if she did have it.
| nemo44x wrote:
| 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.
| BrandoElFollito wrote:
| > One of the advantages (against the many disadvantages) of
| IVF is the available genetic and chromosome testing of a few
| days old blastocyst.
|
| Could you please expand a bit on that?
| Rule35 wrote:
| They can test an embryo before implantation which means you
| don't have to abort so it has much less emotional impact.
| BrandoElFollito wrote:
| Ah ok, so the test itself is the same, just one is done
| before implantation, and the other afterwards. Thanks.
| nemo44x wrote:
| Yeah when the blastocyst is a few days old they can
| extract a few cells and cryogenically freeze the
| remaining blastocyst with minimal chance of having ruined
| it. Those cells are sent to a lab and screened for many
| chromosome and genetic defects.
|
| In fact, ahead of time the IVF clinic will get blood from
| mom and dad as well as saliva swabs from their parents to
| build a model on genetic compatibility. For example, the
| mom and dad may both be carriers for a rare genetic
| disorder and this can be explicitly tested against each
| blastocyst to ensure a baby won't be created expressing
| that gene which would lead to defect.
|
| And of course the cells will be tested to ensure each
| chromosome is normal and blastocysts that are defective
| are discarded.
|
| This isn't a perfect science as they are slim chances the
| cells being tested somehow don't have the right genetic
| information (this is called mosaicism) but that's rare.
| So overall it gives mom and dad the assurance they are
| having a normal baby from a biological genetic and
| chromosome perspective. Because IVF is such a long
| process fraught with danger it's something many IVF
| consumers opt for. Of course, there are ethical and moral
| concerns regarding this for some people so it's their
| choice to not do it or do it and request the blastocysts
| be preserved and potentially implanted anyways. Now
| _THATS_ an interesting debate.
| BrandoElFollito wrote:
| > Yeah when the blastocyst is a few days old they can
| extract a few cells and cryogenically freeze the
| remaining blastocyst with minimal chance of having ruined
| it. Those cells are sent to a lab and screened for many
| chromosome and genetic defects.
|
| Would that part would be different from in utero tests?
| (short of the freezing of course) It has been 15 years
| that we did the tests (on amniotic fluid) so the world
| must have moved forward by now.
|
| > to build a model on genetic compatibility.
|
| I guess that this can also be done for "standard" to-be
| parents.
|
| > or do it and request the blastocysts be preserved and
| potentially implanted anyways. Now THATS an interesting
| debate.
|
| Oh yes - the debate on abort or not abort is already
| have-a-seat-and-get-popcorn worthy, adding to this a dose
| of "willingly implant a known defective blastocyst" turns
| that in to an action movie.
| nemo44x wrote:
| I'm not sure on the first question but I imagine that
| yes, the same types of tests are conducted.
|
| As for any to-be parents - yes and I'd recommend it. You
| may find you both carry a relatively rare recessive gene
| that would give your offspring a 25% of having a certain
| disorder. This can guide your decision on if you want to
| go forward with natural fertilization and risk it (and
| make the choice after testing the cells of the developing
| baby) or opt for IVF to prevent the disorder (and all
| others that are testable). In parents that don't have
| infertility problems, IVF is pretty successful.
| Especially if the mother is still in prime form (under 35
| great but under 30 is spectacular) and the father doesn't
| have poor sperm count and/or quality.
|
| For the last one I err towards it being a personal
| liberty to decide what life you do and do not bring into
| the world. But it does get more hairy when you start
| discussing public support in terms of resources to
| support the child/family. Then it _is_ everyone's
| business imo. But I'd imagine people that can afford IVF
| don't rely on government programs to finance their life.
| nvarsj wrote:
| 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 never would have guessed.
|
| This article points out the rather morbid fact that 90% of down
| syndrome pregnancies are aborted. I still remember the
| conversation with the obstetrician regarding my first child, who
| told us we should screen the pregnancy and implied we should
| abort if there were any major defects (including down syndrome).
| I guess this is standard practice, which is kind of sad, since
| those with Down Syndrome can live fulfilling lives.
| gadders wrote:
| I always thought there was a certain _tension_ between being
| against aborting babies with Downs Syndrome but being OK for
| healthy babies being aborted for lifestyle reasons.
|
| [Not OP specifically, just something I have observed]
| danw1979 wrote:
| 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.
| loevborg wrote:
| My experience in Germany mirrors yours. Although you of
| course have the choice (not to take the test, not to act on
| the results), the process felt like it was leading inevitably
| down the path of aborting the pregnancy in case of a positive
| Harmony result confirmed by another test. I found the
| experience, including talking to relatives about the topic,
| quite unsettling.
| rubidium wrote:
| It's effectively genocide and quite damning on society. I don't
| put it squarely on the parents because it is so difficult.
|
| My neice has downs. Interactions with her are about the here
| and now. Joy and life. Fun and wit. Not plans and efficiency
| and production. Those with downs are modern day prophets for
| the rest of us to expose the soul-destroying utilitarian ethics
| of modern society... and we're killing them!
| slothtrop wrote:
| It's not genocide by any definition. That would constitute
| eliminating an existing culture / ethnicity / society.
| C06aka wrote:
| If eliminating greater than 90% of a group of people via
| genetic testing and systemic demonization isn't genocide,
| nothing is.
| scpedicini wrote:
| 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.
| C06aka wrote:
| 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 coordinated plan of
| different actions aiming at the destruction of essential
| foundations of the life of national groups, with the aim
| of annihilating the groups themselves. The objectives of
| such a plan would be the disintegration of the political
| and social institutions, of culture, language, national
| feelings, religion, and the economic existence of
| national groups, and the destruction of the personal
| security, liberty, health, dignity, and even the lives of
| the individuals belonging to such groups
| scpedicini wrote:
| 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.
| C06aka wrote:
| 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.
| 2lwxxtj wrote:
| People with Down Syndrome are not in any sense a nation
| or national group. It is not applicable.
| DanBC wrote:
| > If it's performed as an abortion would that still be
| considered genocide?
|
| People with Down's aren't a national, ethincal, racial,
| nor religious group so strictly speaking it doesn't count
| as genocide under international law. But it would meet
| less formal definitions.
|
| Luckily individual women making a choice to have an
| abortion cannot be carrying out a campaign of genocide.
| But when a society pushes women in this direction by
| failing to provide support or by failing to provide
| accurate information that society is probably engaging in
| genocidal actions.
|
| > Article 2 of the convention defines genocide as
|
| > any of the following acts committed with intent to
| destroy, in whole or in part, a national, ethnical,
| racial or religious group, as such:
|
| [...]
|
| > (d) Imposing measures intended to prevent births within
| the group;
| BrandoElFollito wrote:
| > It's effectively genocide
|
| I would say that this is effectively getting rid of a batch
| of cells.
|
| It depends on your culture, vision of the world etc.
| 2lwxxtj wrote:
| How is it "damning on society"? Raising normal children is
| already a massive time commitment, and at the end you get a
| functioning adult that you don't have to take care of, and
| which can give you grand children. Why would anyone want a
| child that takes even more time and has to be taken care of
| for its entire life?
| canam wrote:
| As the parent of a child with Down Syndrome who is also
| autistic, I can say it is wonderful experience. He brings
| us great joy and love, despite his unique needs. I couldn't
| imagine that anyone who met him thinks he doesn't deserve
| to exist.
| 2lwxxtj wrote:
| Do you have other children? Would you have preferred it
| if your child with Down Syndrome had not been born that
| way?
| canam wrote:
| I do. I have another son who does not have Down Syndrome.
|
| Your question is difficult to answer. His condition is a
| part of who he is. If he didn't have Down Syndrome he
| would be a different person. In effect your question is
| do I wish I had a different son. The answer is no,
| despite the challenges.
| 2lwxxtj wrote:
| If I were to ask if you'd prefer that your normal son had
| been born with Down Syndrome, would that be an easier
| question for you to answer?
| tptacek wrote:
| This is getting creepy. Maybe you might back off a bit.
| 2lwxxtj wrote:
| He made the choice to share personal details. If he
| doesn't want to continue to answer, he doesn't have to.
| I'm not going to follow him around on here trying to get
| an answer out of him.
| canam wrote:
| It's really not a different question. Either way if my
| other son also had Down Syndrome, I would accept him and
| love him for who is. That's our job as parents, right?
| BTW, our odds of having our first son with Down Syndrome
| and autism were about 1 in a million (maybe higher). Our
| odds of having a second child with Down Syndrome were 1
| in 100. That didn't stop us.
|
| I don't mind answering questions about our experience.
| Hopefully this line of questions isn't trying to prove a
| point.
| 2lwxxtj wrote:
| As a parent, it is terribly hard to imagine your child
| not being there. I suppose what I'm curious about is,
| knowing what it's like to raise a child with Down
| Syndrome and what it's like to raise a child without, if
| you hadn't had either child yet, or perhaps were to have
| a third child, would you have a preference, and if so how
| strong of a preference?
| smabie wrote:
| What does this mean? Like you don't think people should
| have the choice to abort?
| 2lwxxtj wrote:
| >which is kind of sad, since those with Down Syndrome can live
| fulfilling lives.
|
| So can people that don't have Down Syndrome.
| throwawaysea wrote:
| > This article points out the rather morbid fact that 90% of
| down syndrome pregnancies are aborted. [...] I guess this is
| standard practice, which is kind of sad, since those with Down
| Syndrome can live fulfilling lives.
|
| I get what you're saying when you mention living a fulfilling
| life, but there is an impact to others as well. A couple I know
| decided to have one last child late, and unfortunately had a
| Down Syndrome pregnancy. Abortion was out of the question for
| religious reasons. They took joy in the pregnancy, and
| approached it with lots of motivation. Early on, they got a lot
| out of the simple joys of raising their Down Syndrome child,
| which others in this discussion have referenced. However it
| became more of a problem over time. There is a spectrum of
| functionality for those afflicted with Down Syndrome and some
| children have the capability to be more independent, or more
| manageable, while others don't.
|
| In this case, although things started off well, it became
| apparent that the child would never be functional enough to be
| independent in any way, despite lots of efforts and investment
| from the parents. The situation created large stresses and
| constraints on the family - the parents, the siblings, their
| friends, etc. It changed what activities they could hold as a
| family, what social functions they were invited to, where they
| could live, and so on. Ultimately it destroyed their marriage
| and has created a lot of complications for them now, in terms
| of taking care of their now adult child.
|
| My exposure to this basically confirmed that I would choose
| abortion if faced with the same situation, as the burden
| created on others' lives is simply too much.
| OskarS wrote:
| 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.
| nvarsj wrote:
| Yeah of course, it is a really tough decision.
|
| I think though, as the article points out, doctors have a
| responsibility to properly educate about the life quality of
| down syndrome so parents can make an informed choice. Right
| now, standard medical practice seems to be to just recommend
| abortion without much information.
| slothtrop wrote:
| 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.
| anthk wrote:
| This. Also, potential risk for themselves when the caring
| persons are not alive any more.
| patwolf wrote:
| 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.
| nemo44x wrote:
| 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.
| itsananderson wrote:
| "idiot" may have been a relatively innocent medical term, but
| "mongoloid" has a very racist history as a way to describe
| people with Down Syndrome
| (https://en.wikipedia.org/wiki/Mongolian_idiocy), including a
| popular pseudoscientific theory that people with Down's were
| a result of "Caucasian" interbreeding with supposedly more
| primitive "Mongoloid" races
| https://en.wikipedia.org/wiki/The_Mongol_in_Our_Midst
| mensetmanusman wrote:
| Interesting how scientific technology gets used in various
| cultures. Ultrasounds are illegal in some countries because
| people abort based on gender due to their cultural view of
| humanity.
|
| Western secular society looks at humans more as mechanistic units
| in an economic machine instead of as spiritual beings with
| inherent value, so it's no surprise that 90% of downs tests
| result in an abortion.
| [deleted]
| BrandoElFollito wrote:
| > Western secular society looks at humans more as mechanistic
| units in an economic machine instead of as spiritual beings
| with inherent value
|
| As a member of the "western secular society", I do see humans
| as humans, not economic machines.
|
| I also let these humans make their own decisions based on what
| they want in life. Some people will want to have children that
| are disabled (even writing this sounds horrible), others will
| not.
|
| Condemning someone because they have another view on life
| drives violence and mistrust. I am surprised that someone who
| sees people as spiritual beings with inherent value would have
| such a point of view.
| _-david-_ wrote:
| I've known a guy with down syndrome for over 10 years and saw him
| at least once a week for years.
|
| He is the happiest person I have ever met. The only time I have
| ever seen him without a smile was when his mother asked him to
| stop talking over her. He had a frown for about 5 seconds and
| then went back to having a huge smile. If you just say hello to
| him his smile would get even bigger than it already was. Just
| seeing someone who was so happy all the time really made me feel
| good.
|
| I moved for a while and anytime I returned he would always ask me
| about my apartment and the area I was living. He always seemed so
| interested in my life. Many times people just ask "how are you
| doing?" but don't actually care since it is just a greeting for
| them. With this guy he genuinely cared how I was doing. It is so
| refreshing to have someone like that in my life.
| lukeholder wrote:
| What a fantastic read. Tears in my eyes.
| C06aka wrote:
| The test used to determine who to genocide is called the "Harmony
| test". How positively dystopian.
| dang wrote:
| There are deep issues to discuss here. Flamebait and name-
| calling destroy that possibility, so please don't post like
| this.
|
| https://news.ycombinator.com/newsguidelines.html
| C06aka wrote:
| No issues to discuss with the removal of my post, apparently.
| Not sure where the flamebait or name-calling were. You just
| didn't like my post. Own your bias.
| dang wrote:
| "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 are still
| dealing with, every side of this profound and painful
| issue. That calls for compassion, regardless of where you
| are on the opinion spectrum.
|
| When you show up with intense judgments and condemnations
| ("genocide", "dystopian", etc.), you're destroying our
| chance at human understanding. It changes the nature of the
| thread as much as hitting someone in the face would change
| a dinner.
|
| It's also the cheapest of internet moves, the easiest thing
| to produce online, because it feels so good and justified
| while you're doing it. We've all been there, of course.
| When it feels like people aren't listening to you, the only
| thing left to do is shoot rhetoric in the most concentrated
| form you can come up with. That'll show them.
|
| In reality, what you're doing is poisoning the connections
| between people. That's not as bad as poisoning people
| literally, but it's a second-order version of the same
| thing.
| C06aka wrote:
| 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.
| dang wrote:
| 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 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, try pondering
| that.
| farrelle25 wrote:
| 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 hour to eat his lunch... He kind of haunts me to
| this day because I'm always a bit frantic, rushing...
|
| But definitely spending time with people with disabilites opens
| another layer on life (although it can so hard for the
| parents/family caring for people with profound disabilities).
| WrtCdEvrydy wrote:
| 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.
| rory_isAdonk wrote:
| Respect to you sir.
| farrelle25 wrote:
| 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 ...
| YeGoblynQueenne wrote:
| I am curious: is there anyone here on HN who has Down's syndrome?
| CptMouse wrote:
| Yes, dang is a notable case.
| Jabbles wrote:
| You seem to have missed the point that making fun of Down
| Syndrome is not appropriate.
| dang wrote:
| I appreciate the intention, but this thread is so full of
| good spirit that I don't think we need to worry too much
| about rules at that level.
|
| The comment was making fun of me anyhow and I laughed.
|
| Edit: incidentally, that account is banned so the comment
| was killed, but HN has a bug where flagging dead comments
| sometimes unkills them...how's that for irony.
| blendergeek wrote:
| 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.
| dang wrote:
| 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 sanitize too much ends up being bad for health.
| We've learned this about immune systems; I think this is
| similar. Each individual move to exclude dirt or kill
| germs is impeccable--beyond criticism, lest one be
| accused of favoring germs--but the endgame is sterile and
| leaves us vulnerable to worse ailments. Cracking down
| sternly on everything that is "not appropriate" and
| "could be offensive" is not taking us to a good place--
| it's making us meaner and colder, and even in many cases
| crueler (I'm not talking about you). Online discourse
| badly needs a way to get off this train. Maybe we need to
| risk some injury by jumping off before we crash.
|
| I posted this article. I put it in HN's second-chance
| pool (https://news.ycombinator.com/item?id=11662380), so
| it got a random placement on HN's front page. I turned
| off the flags on it because it's obviously on topic for
| this site
| (https://news.ycombinator.com/newsguidelines.html). I've
| moderated the thread by banning or cajoling accounts that
| were breaking HN's rules, and by collapsing the places
| where it derailed into flamewar. I've rolled back the
| clock on it a couple times, too--we do that when a thread
| is particularly good, sort of like slowing down when
| you're reading a great book because you don't want it to
| end. These are ways to, in my view, support understanding
| and good feeling. From my perspective, shaming people
| when they make a bad joke doesn't serve love. It's more
| in the lineage of schoolteachers who used to rap kids'
| knuckles with a ruler when they didn't behave. We need
| better ways to learn not to hurt each other.
| BrandoElFollito wrote:
| That was quite a lot of work you did :)
|
| Such articles always make me wonder about you, jumping
| from thread to thread to see what is going on with some
| "oh shit shit shit" looking at 5 places at the same time.
|
| Good work as always!
| YeGoblynQueenne wrote:
| 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.
| loveistheanswer wrote:
| Laughing at people who are trying to be mean to you can
| be a more practical and healthy reaction than
| internalizing and mirroring their meanness.
|
| Kevin Hart talked about how the comedians he came up with
| throughout his career would incessantly assault eachother
| with insults, and how this in turn gave him great self
| confidence and the ability to laugh off anyone who tried
| to insult him.
| paperwasp42 wrote:
| >Each individual move to exclude dirt or kill germs is
| impeccable--beyond criticism, lest one be accused of
| favoring germs--but the endgame is sterile and leaves us
| vulnerable to worse ailments. Cracking down sternly on
| everything that is "not appropriate" and "could be
| offensive" is not taking us to a good place--it's making
| us meaner and colder, and even in many cases crueler (I'm
| not talking about you). Online discourse badly needs a
| way to get off this train. Maybe we need to risk some
| injury by jumping off before we crash.
|
| Just have to say, I greatly appreciate this response, and
| it expresses a lot of my personal thoughts in a way I've
| always struggled to.
|
| As someone with a neuromuscular disease, I make quite a
| few "cripple" jokes, and while most people get the self-
| deprecating humor, I occasionally run into people who
| berate me for being inappropriate, since "other disabled
| people may find it offensive." Those "occasional"
| encounters have tripled in frequency in recent years, and
| it's left me feeling a bit unsettled.
|
| Logically, it shouldn't make me feel unsettled--I mean,
| people are literally saying, "I respect people like you
| so much, I don't want to hear ANYONE say mean things
| about them." But your response puts it beautifully--it's
| not the individual encounters that make me unsettled, but
| the over-arching environment those seemingly well-
| intentioned encounters create.
| objectivetruth wrote:
| Just wanted to chime in that I agree with you 100% and
| was pretty disappointed to read the moderator's response.
|
| Not surprised, though, since if there's one thing that
| the groupthink here usually reaches consensus on, it's
| that "cancel culture" as described by Fox News is totally
| real and a dangerous threat to discourse and that we
| should be able to say^H^H^H joke about whatever we want
| without regard for the feelings of others.
| Daub wrote:
| 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.
| yhoneycomb wrote:
| Just curious could you give examples of them being witty?
| millisecond wrote:
| Different situation but I have a 6yo with downs and this
| rings true to me.
|
| He's always trying to crack a joke. He'll say loudly "good
| night Uschi!" (his grandmother's nickname) to my wife with a
| grin on his face like he made the funniest joke. Not Seinfeld
| over here but we laugh pretty hard.
| notretarded wrote:
| Seinfeld wasn't funny anyway
| hobbyjogger wrote:
| 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.
| arkitaip wrote:
| That's hilarious!
| Daub wrote:
| Always wanting to subvert serious situation. For example...
| me being in a bad mood having to get up at 5.00am to milk the
| cows, and this Downs boy looking up at me with a crazy big-
| ass grin that would completely wipe all sour thoughts from my
| mind.
|
| They play with language in a very disarming manner. Not
| highbrow, but will find compelling nicknames for their loved
| ones and deliver them in a way that is difficult not to be
| drawn in by.
| farrelle25 wrote:
| That's so true about playing with language...
|
| We had a resident with Downs who needed assistance every
| day ...
|
| But he got tired always asking "You help me?"... and
| started saying "I help you!" (and laughed)...
|
| We knew what he meant & came over ... he got a kick out of
| swapping his pronouns :)
| slothtrop wrote:
| That's all very nice, but it isn't wit.
| ben_w wrote:
| 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.
| scpedicini wrote:
| 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.
| Mediterraneo10 wrote:
| > They were amongst the most ... witty people
|
| We have to be careful about praising the disabled like this,
| because we risk being condescending. This is an age-old
| phenomenon - in _Ulysses_ (published already a century ago),
| James Joyce has his protagonist muse on the fact that people
| are so quick to praise a blind person for his jokes not because
| the person is actually funny, but simply because people's
| expectations towards the disabled are so low.
| scpedicini wrote:
| This weirdly reminded me of how Michael Bluth fails to
| realize his girlfriend Rita has a learning disability because
| of her aristocratic sounding British accent in the show
| Arrested Development.
| fakedang wrote:
| I think he was talking about Down Syndrome folks, and I can
| tell you that DS folks are the most friendliest folks in the
| crowd. I'll even go ahead and say that they are more
| charismatic than most software engineers.
|
| My younger brother has Down's, yet he tends to be way more
| friendly with not only strangers but my relatives too,
| compared to myself.
| 83457 wrote:
| Is it wrong to say they look alike? There are just times
| where there is such commonality in a group due to genetic
| abnormalities and other factors that descriptions are more a
| fact than a stereotype.
| BobbyJo wrote:
| _Wrong_? No. But definitely pointless and insensitive.
| Common genetic factors causing similar phenotypes isn 't a
| novel, or even interesting, thought.
| 83457 wrote:
| Is it pointless and insensitive for a scientific manual
| to indicate that all individuals with a certain genetic
| disorder look incredibly similar across races and
| genders?
|
| My point is that there is a difference between
| stereotyping races/cultures and indicating highly
| correlated attributes in individuals with specific
| genetic/chromisonal abnormalities.
| remlov wrote:
| I am 37, male, and can place both palms on the floor without
| bending my knees. I am definitely average in health and am sure
| this isn't unique, however, I am not discounting ligament
| laxity which is prevalent in individuals with Down syndrome.
| artificialLimbs wrote:
| You can find the movie "Kids Like These" on Youtube (and maybe
| elsewhere). It is based on Emily Perl Kingsley's "Welcome to
| Holland" mentioned in the article. Proud to say my brother was
| one of the "David" characters. He's a movie nut and can tell you
| the actor/actresses in pretty much any PG rated movie in the last
| 20 years.
| kingsloi wrote:
| 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, I've completely forgotten
| about the past 6 months in the ICU.
|
| A nurse gave us a copy of "Welcome to Holland" not too long after
| we had gotten the diagnosis. It was a beautiful explanation as to
| why life is going to be different than we expected, the same
| destination, just a different path. It wasn't until a few weeks
| later that we realised the author's name is Emily Pearl Kingsley,
| which is oddly coincidental as my name is Kingsley. Weird.
|
| https://www.emilyperlkingsley.com/welcome-to-holland
|
| This is an interesting time to read this, thanks for sharing. My
| wife and I just brought our 6 month old daughter home from the
| ICU after spending all but 2 weeks of her life there.
|
| Our lil baby has Kabuki syndrome, it's extremely rare, but has
| similar attributes to Downs. Kabuki can and has affected multiple
| organ systems with our girl, she has very complex heart disease,
| a pelvic kidney, hypotonia, hip dysplasia, malrotation, right
| isomerism, asplenia, immunodeficiency, endocrine issues, severe
| hearing loss etc, etc.
|
| It was a hard pill to swallow that I am a dad to a special needs
| child now. Kabuki kids have varying levels of mental and physical
| disability, but we were told she will likely be generally happy,
| which is all mom and I really care about. We're at peace with
| everything now, and are just extra loving on the small things
| (like her smiling!)
|
| I do plan on blogging about being a dad to a medical 1%-er,
| tips/tricks, especially as I am originally from England and now
| live in the US, if anyone is interested.
|
| https://kingsley.sh/posts/2021/staggering-cost-of-surviving-...
| canam wrote:
| 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!
| mberning wrote:
| I can't even imagine the stress this has put you through. Best
| wishes in your endeavors.
| willwashburn wrote:
| Down syndrome continues to be the most common chromosomal
| disorder. Each year, about 6,000 babies are born with Down
| syndrome, which is about 1 in every 700 babies born.
|
| Between 1979 and 2003, the number of babies born with Down
| syndrome increased by about 30%.
|
| Older mothers are more likely to have a baby affected by Down
| syndrome than younger mothers. In other words, the prevalence of
| Down syndrome increases as the mother's age increases. Prevalence
| is an estimate of how often a condition occurs among a certain
| group of people. To estimate the prevalence of Down syndrome, the
| number of pregnancies affected by Down syndrome is compared to
| the total number of live births.
| smeej wrote:
| 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/
| fodmap wrote:
| 'Campeones' (Champions), directed by Javier Fesser in 2018, is a
| beautiful movie inspired by 'Aderes' team in Burjassot (Valencia,
| Spain), a team created with people with intellectual
| disabilities, some of them with Down Syndrome.
|
| https://en.wikipedia.org/wiki/Champions_(2018_film)
| BrandoElFollito wrote:
| I found the movie average, except for the last part (I will not
| spoil it). That part really gives a special, positive view of
| the world.
|
| Just for that the movie is really worth watching.
| Jabbles wrote:
| 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.
| dang wrote:
| " _Eschew flamebait. Avoid unrelated controversies and generic
| tangents._ "
|
| https://news.ycombinator.com/newsguidelines.html
| anthk wrote:
| In Spain you can abort a child with Down's Syndrome because
| it's ethically better. In the end, they parents and relatives
| will die and lots of these people can't manage themselves
| alone, making a huge risk for them.
| nicolas_t wrote:
| 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.
| meepmorp wrote:
| Has anyone but RMS diagnosed RMS as having an autism spectrum
| disorder?
| rory wrote:
| Regardless of which classifications he fits or does not fit
| into, it's pretty obvious he's not neurotypical.
| meepmorp wrote:
| No, that's bullshit. Don't play armchair neurologist and
| diagnose people's conditions from a distance as a way of
| explaining their behavior.
| rory wrote:
| I clearly stated I'm not diagnosing any conditions, so
| the accusation is uncalled for.
|
| Neurotypical is hardly a scientific word, but to the
| extent it applies to anyone, you'd have a hard time
| convincing me it applies to RMS.
| meepmorp wrote:
| The term neurotypical doesn't have to be scientific to
| have meaning. The term is very strongly associated with
| autism and ASD, and that's the context in which the term
| was used here. Using an existing, loaded term in
| reference to a person's behavior, prefixed with a "I'm
| not diagnosing any conditions," fig leaf is disingenuous.
| rory wrote:
| You are the only one using the words autism and ASD in
| this thread. There was no such prior context.
| tablespoon wrote:
| > Has anyone but RMS diagnosed RMS as having an autism
| spectrum disorder?
|
| IIRC, he actually claims he _doesn 't_ have ASD, but his
| reasoning suggests that he doesn't know what he's talking
| about: https://news.ycombinator.com/item?id=26537802
| C06aka wrote:
| He's a child free antinatalist. I don't think we should hold
| his ideas on this topic in very high regard.
| ReadFList wrote:
| It's amazing how lots of things, such as research on anything
| that remotely touches Human Intelligence is considered
| "Eugenics", bad, fascist.
|
| But killing the unborn is a-ok because they would "suffer", and
| the worst of all, they would be a burden on the parents who
| would not be able to continue their hedonistic lifestyles, they
| should be consuming stuff all the time, for the good of
| society! Now that is good and desirable.
|
| Sick world
| dang wrote:
| Your account has been using HN primarily (even exclusively)
| for ideological battle. That's not allowed here because it
| destroys the curious conversation that HN is supposed to
| exist for. We therefore ban such accounts, regardless of
| which ideology they're battling for or against, and I've
| banned this one.
|
| If you don't want to be banned, you're welcome to email
| hn@ycombinator.com and give us reason to believe that you'll
| follow the rules in the future. They're here:
| https://news.ycombinator.com/newsguidelines.html.
| anthk wrote:
| >Sick world.
|
| Half of Europe will allow you legally to abort a potential
| child with Down Syndrome for _ethical_ reasons. What if the
| child matures and their parents die and there is no relatives
| to take care of them? That 's really dangerous. But hey, the
| so called "free" Americans will know better. Sure.
| ReadFList wrote:
| >What if the child matures and their parents die and there
| is no relatives to take care of them?
|
| We have plenty of social structures to take care of them,
| and where there aren't we create them, but that is what
| should be done, and what we already do to orphans, sick
| people, etc. Why are people with DS different?
|
| >But hey, the so called "free" Americans will know better.
| Sure.
|
| I am European.
| anthk wrote:
| Ok, Spaniard here, were are not eugenysts or some crazy
| wackos, we just take in account all possible issues with
| a severly disabled future person both for the surrouding
| people and themselves.
| ReadFList wrote:
| >were are not eugenysts or some crazy wackos
|
| I, respectfully, disagree.
|
| >we just take in account all possible issues with a
| severly disabled future person both for the surrouding
| people and themselves.
|
| Following that "logic" we should euthanize every single
| human being because we don't know which bad things can
| happen to them. I mean who wants to suffer right? We
| can't allow for anyone to be a burden on anyone, it's not
| like we have any obligation for others.
|
| Everything you said could be applied to everyone.
| Including you and me.
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