At Home with Down Syndrome (2008)
thenewatlantis.com
thenewatlantis.com
> 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.
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.
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.
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 :)
That's the thing. Something rare like Down Syndrome only has a very small selective pressure against it, and it's really easy for other effects to remove a fraction of it.
So things that seem ridiculous like this assertion or the "super uncle" theory about homosexuality are not so easily dismissed when one really thinks about them. Of course, there can be selective benefits from genes with a propensity for (forming trisomy 21, having homosexual individuals, etc) when the specific condition doesn't manifest.
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.
Without missing a beat, he countered, "Maybe I was going the other way..." and sort of moonwalked back the way he came.
Disregarding that though, I'm legitimately shocked to learn that anyone, fat or not, could do that without a regular stretching routine.
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.
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.
"We shouldn't praise because we risk condescending" ... whuf. and people call me crazy.
My point is that there is a difference between stereotyping races/cultures/disabled and indicating highly correlated attributes in individuals with specific genetic/chromisonal abnormalities.
If it's in a useful and tasteful context, discuss away. Otherwise, just don't be a chode.
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).
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.
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 ...
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.
Could you please expand a bit on that?
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.
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.
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.
It certainly is a personal liberty. I am French, atheist, and I am very much attached to that freedom.
Having healthy discussion about this is good as it is an eye opener for all the sides involved.
Now, there is the general population part: someone who willingly decides to have a sick child that will cost more to the society must be ready to bear all the costs, including the ones after their death.
On the other hand, this should also apply to people who smoke, are overweight etc. and though this choice are also a burden for the society, financially speaking.
The last part (money) is not an easy one. The first one (morality) is much easier as everyone is an expert in the subject :)
This is easy - you just need a way to measure in advance someone's total utility to society, including any inventions they might make, number of people they make laugh or encourage, how many lives or livelihoods they may save, and then decide whether or not they're worth it.
Get back to me when you have that, would you?
I am very much for a socialist society, like the one we have in France. I am ready to pay, and do it with pleasure, so that people born disabled, or living in poverty have a chance like my children do.
When someone makes the clear decision to have a child that will be disabled then that person must assume that the world will not be running to help them when they realize they have huge expenses. They wanted these expenses so please do not come crying afterwards, though campaigns.
This is very much different from accidents - we need to be solidar here.
This is very similar to people who smoke or eat to become overweight and then cry when comes the operation that costs a fortune.
Sorry - but I want my money to be spent on things that help the ones who need help and did not expect or predict to be in a bad situation. Not the ones who decided to have a disabled child becaise of some shower vision of theirs.
> 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.
Someone checks for disabilities with their to-be-born child, learns that they have one and then decides not to abort. This means they conscientiously make the choice to have one.
I do not think this need to be debated further.
That's deciding not to do something, not deciding to do something.
Calling inaction deciding to do something is just a way to frame things to try and make action the default.
To me it’s spectacular how involved we can be in the natural selection process due to our brains evolving so much. I can’t wait to see how we further this.
This is a point I never considered (theoretically - I am a parent of teens so the question is over for me). I always assumed that IVF is much more risky (all things taken into account) that natural procreation but I have never actually gave a thought on that.
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-...
There were many jarring moments in that blog but the number in the last one is probably the most shocking. I deeply hope you find a resolution to that. Vampiric is absolutely the word.
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.
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.
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.
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.
[Not OP specifically, just something I have observed]
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!
I would say that this is effectively getting rid of a batch of cells.
It depends on your culture, vision of the world etc.
Famously, those with other ailments such as deafness or blindness have gone on to form their own subcultures. This of course never happened with the likes of Downs because they are not a "group" broadly and autonomously forming a culture. They are dependent on care, usually, and at the very least for a good portion of their lives.
You seem to think the risks of carrying a child knowing they will have Downs are irrelevant and ought to be borne by the parent. That's irresponsible and naive.
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;
>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
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.
So can people that don't have Down Syndrome.
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!
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.
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.
Of course as they often do, these terms of classification became derogatory after people used them as an insult.
Just for that the movie is really worth watching.
Add to that the quote at the end about "every family should have a down syndrom kid" and all I can think is there"'s a strong case of misery loves company here.
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.
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.
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.