A Daughter’s Disability and a Father’s Awakening
sapiens.org
sapiens.org
That said, I don't know whether they're part of the "intended" human condition. They don't seem to hold any advantage over non-Down people, only disadvantages. If anybody is scared about similar thoughts, consider doing a non-invasive pre-natal test (NIPT) during a pregnancy; it's a test that checks the infant's DNA in mother's blood, and has a great accuracy.
If you aren't sure that you'd abort the fetus if a genetic abnormality were detected, you'd probably be less likely to take a screening test that poses even a minor risk to the fetus. (of course, there are other reasons to know, like if you are considering a home birth versus hospital birth, you'd want to know if the baby will have any special needs at birth)
I don't know a lot of people that refuse the noninvasive prenatal screening offered by California... even if you don't act on the information you receive.
Back from when I was pregnant, I also recall that my insurer (Kaiser) would cover the cost of NIPT for anyone 35+ or in certain high-risk cases without having to go through the state. They also covered the cost of carrier testing.
edit: I thought maybe you might be thinking of newborn screening which is also very much a Thing in CA, but it turns out that is also not free - $130, also covered by most insurance. Good to have though!
Perpetuating a positive stereotype is ultimately no less harmful than a negative one.
People with downs are just people, sure, most are nice, but most people in general are nice, they can also exhibit the full spectrum of other human behaviors within the confines of their condition.
A friend of mine growing up had Downs, he could be nice, but he could also be angry or petty, just like the rest of us.
I'm not going to give my full "eugenics is a short-sighted, moronic evolutionary strategy" semi-annual rant at this time, and I want to add the HUGE caveat that I'm only talking about humans as a population of evolving animals, and not as individuals with rights, worthy of moral consideration. That's a whole different can of worms I am not prepared to open.
With that giant caveat, from the standpoint amoral evolution, Down syndrome is the non-fatal duplication of a large number of genes, which can be extremely advantageous long-term, despite short-term disadvantages. The extra copies of the duplicated genes can mutate freely to take on new functions, while one copy maintains the original form and function. Evolution is the process of variation and selection, and while everyone gets hung up on the selection end of things, the variation is also important. You want your population to support as much variation as possible, so that it can explore as much of the evolutionary search space as possible.
So from that evolutionary standpoint, Down syndrome is an "intended" part of the human condition.
What long term are you talking about? Until you include individuals with trisomy 21 having families and passing on this trait, your line of reasoning makes no sense.
Genetic tests reveal no known cause. We knew something was wrong because there was a slight variation in brain ventricle size in utero. In my view, the child has something very close to Angelman’s syndrome, which pairs the retardation with a pretty sunny disposition.
I feel overjoyed to have these children and would never have dreamed of aborting them. The only problem is that I am saving not only for our retirement, but for care of the children once we die. It is a little bit stressful in that regard.
Wishing you and your children the very best. I can't imagine your stress, but I've little doubt the end result will be that your children will be well taken care of after you're gone because of the work you've done and you're doing.
> After genetic testing confirmed the diagnosis, one doctor assured us that “they’re such happy people.” They. Them. Those people.
Damn, give the doctor a break. There appears to be no way to talk about people with Down's syndrome as a group without offending this guy's rules.
I bet the doctor doesn’t refer to a race as “they” along with a singular characteristic. Why would a disability be different?
It’s the same as when people expect all people on the spectrum to be savants.
"Black American males have higher rates of heart disease than their white counterparts"
That black American males are a "they" in this sentence is an unavoidable feature of the language. How are we supposed to make statements like these without being accused of othering?
Would you feel differently if the doctor had said something like, "They have high rates of happiness"? How is that different?
Of course, but you wouldn't make ludicrous statements like "all black people are good at dancing", or "all black people are fast runners" - so why would it be OK to say that "Down's people are happy"?
Nobody is claiming we can't talk about people with Down's, or other disabilities, as a group - but we can do it without predujice and discrimination.
"The dutch are tall" does not mean that all dutch people are tall, but that on average they are taller than ourselves.
Yes, talking about large groups of people can devolve into prejudice and discrimination, but in this case we're dealing with a group of people who are substantially, physically different. It is rational to point out the impacts of those differences.
No, this is actually a well-ingrained stereotype, and I've heard exactly the same words from dozens of people (including those in the medical profession) - it seems fairly clear that the doctor was indeed stereotyping.
> "The dutch are tall" does not mean that all dutch people are tall, but that on average they are taller than ourselves.
> in this case we're dealing with a group of people who are substantially, physically different. It is rational to point out the impacts of those differences.
I'm sorry, but this is utterly absurd - you are talking about things that are factual; it is not a fact that people with Down's Syndrome are happier than other groups, neither do related physical differences (facial features, hypotonia, heart problems, whatever) them happy.
This is a odd thing to assert so forcefully. Have you seen any studies supporting this? FWIW, [1] is a survey indicating that the Down's syndrome population (in America anyway) might be endowed with fantastically high levels of happiness, satisfaction, and self esteem. Here's a quote:
Nearly 99% of people with Down syndrome indicated that they were happy with their lives; 97% liked who they are; and 96% liked how they look. Nearly 99% people with Down syndrome expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with Down syndrome felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life.
Call me crazy, but I suspect these numbers are far higher than what you'd get from a non-Downs population. It certainly seems like a reasonable and innocent bit of cheer for a doctor to offer to a new dad.
> Our results are also limited by the lack of diversity of our respondents, who did not include many black/African Americans, Asian, American Indian, or Alaska Native Americans
> The results from the parent/guardian respondents (published separately) also showed that their median gross household income of $100,000 was significantly higher than the national median gross household income of $49,777
So, they surveyed people from affluent, white, American families - I suspect the numbers from this group would be rather high regardless of DS.
> It certainly seems like a reasonable and innocent bit of cheer for a doctor to offer to a new dad
I get where you're coming from with this, I do - the doctor wanted to offer some comfort to the father; but positive stereotypes are not helpful, and a doctor should know better. IMO, the doctor should have educated, rather than patronised (however well-meant) - for example, he could have explained how incredibly better outcomes are for those with DS nowadays.
I think a comparison of this type of view to the 'casual racism' of the 70's is valid, where people think it's OK to think and say these kind of things, not necessarily out of malice, but simply out of ignorance.
How is it acceptable in any way to make sweeping statements like that?
> There appears to be no way to talk about people with Down's syndrome as a group without offending this guy's rule
Yes there is - talk about people with Down's syndrome as you would about people. It's also perfectly possible to talk about the often related physical/health/mental conditions that affected people with Down's without making 60's throwbacks such as saying "they are all happy".
It feels like we've come forward leaps and bound on racial equality, but it honestly still feels like a lot people treat those with disabilities as an invisible subclass of inhuman monsters.
Disclaimer: I'm the father of a daughter with Down's
Leaping to judge someone’s entire mental landscape by comparison to racism, based on a single statement and possibly poor choice of words is so harsh as to be without value.
That's not the issue. The issue is thinking it's OK to make ludicrous, stereotypically comments about a huge group of people.
> Leaping to judge someone’s entire mental landscape by comparison to racism, based on a single statement and possibly poor choice of words is so harsh as to be without value.
I wholeheartedly disagree.
While my comment was in reply to a stereotyping comment, it was aimed at the wider group of people who still today spout such nonsense - I should have made that clearer tho. In particular, the doctor in the OP is a doctor, and should know better than to say such ridiculous things.
I also think the comparison to racism is valid. Many of the discriminating comments against those with disabilities are made out of ignorance. We've come a long way legislating and educating people about race, and it's made an incredible difference (at least in the UK; I realise the situation in the US is complex to say the least), and I think it's high time people stopping thinking it was OK to make comments like "all Down's are happy".
So, dare I ask, how should our apocryphal doctor rephrase his encouragement so as to not run afoul of these rules against sweeping or outdated expressions?
From the article:
"they’re such happy people."
So no, I'm absolutely not twisting anything - this statement cannot be interpreted as anything other than stereotyping. He obviously meant well, but the fact he would say this shows his own ignorance of people with Down's Syndrome.
This isn't just about my life experiences, it's about the rights of people with disabilities.
The way I see it, you are twisting my offence at your words, in an attempt to justify your discrimination (perhaps to yourself).
The real risk to you is that you end up alienating people who are otherwise completely on your side (and your daughter's side), and whose help or support you (and she) may benefit from. For no good reason.
I notice you didn't answer my question.
Not directly no: IMO, the doctor should have educated, rather than patronised (however well-meant) - for example, he could have explained how incredibly better outcomes are for those with DS nowadays. (another posted here commented on this too).
> The real risk to you is that you end up alienating people who are otherwise completely on your side (and your daughter's side), and whose help or support you (and she) may benefit from. For no good reason.
So, I am normally careful not to do this, and favour educating people over attacking them, precisely because they mean no malice with the stereotypes they help to enforce. Before I became a father, I knew little of DS, or indeed the lives of those with disabilities, and undoubtedly harboured some of the same stereotypes, simply out of ignorance.
I may have let my emotions run away a bit in this thread (sorry, it's been a difficult week...), but I still believe we need to stop thinking it's OK to to enforce false stereotypes of large groups of people. We've made huge progress on gender equality, racial equality, religious equality, sexual equality and gender identity - I think it's time we did some of the same for the rights of people with disabilities.
This is a difficult problem to solve, but I believe a good start would be to better integrate children with disabilities into mainstream schooling. Of course, there are some children that are not going to thrive in mainstream education, and better prosper in a specialised setting - but there is a large group who can thrive in mainstream education with only a minimum of accomodations being made. This would help to make those with disabilities less invisible, and typical kids would learn from a very young age that we are all just people, and not so different.
Don't confuse the inherent (and very real) challenges and risks of Ds with 1) the additional social burden we place on people with that diagnosis and 2) second order effects because we really didn't understand Ds all that well until recently. The author covered social stuff, so I'll mention a second order effect. My go-to example is that some of the speech problems previously thought "characteristic" of Ds turned out to be years of untreated ear infections in ear canals that are characteristically narrow. Once doctors learned to watch Ds kids' ears more closely, the prevalence of those speech problems decreased.
People with this condition can do so much more than we thought 50, 30, or even 10 years ago. Things you think you knew from seeing "those kids" in the separate classroom on the other side of the school aren't true anymore (if they ever really were). My son's life is worth the same as any other child's, and he will be a valuable member of society when he's older. I hope you'll give him a fair chance.
I know you'd agree, he already is a valuable member of society. He's already made you a better person, and everyone you influence in turn.
Hi, another father of a young child with Down's here. Our story was a bit different to most, as we didn't find out our daughter had Down's until she was almost 2 years old (rather odd, I know).
In some ways I think we were fortunate to know our daughter as 'just a typical child' first, then mourn and grieve over the possibilities we imagined she might have.
Of course, I can't know how things would be if we found out pre-natal or at birth, so it could be I've just convinced myself of this :)
I understand the why, but it doesn't make him any less dead wrong. If you told people they were going to wake up the next morning with Down syndrome most of them would put a gun in their mouth. I certainly would, and not because I feared how society would treat me.
This article is just the latest incarnation of the "noble savage" myth; the worship of anything deemed "natural". Well guess what, worms that eat the eyes out of little children are natural too. So is malaria, and cancer, and blindness, and fibrodysplasia ossificans progressiva.
The "diversity of human existence" as he calls it has a greater variety of horror than ever imagined by the most bloodthirsty tyrant or tortured writer. We've spent centuries in a war to the knife against that horror and for someone to declare they're on the other side is a stupefying act of denial.
It sounds like you really don't understand the 'why' of the article if that's what you came out of it with.
This isn't about living in some state of angst. This is about accepting reality and not maintaining [potentially harmful] delusions about disability to avoid strife.
There are some unpleasant parts of life that we yet cannot change. How one feels about them, regretful or not, is another matter; but ignoring reality is a poor decision in any case.
By far the biggest harm caused to people with downs is that caused by other people.
People with downs can lead rich and rewarding lives, and facists should stop pushing a genocidal agenda against people with disabilities.
Anyone who visits or is in Berlin and likes their theater wild and creative, these people rock so much:
https://rambazamba-theater.de/
https://rambazamba-theater.de/programm/
I went there with a kind of patronizing attitude, like, I was prepared to clap politely... but I left feeling very alive and utterly impressed. I know such examples are not representative of the full spectrum of people living with that condition, of course not, but for what it's worth (and that's a lot, to me personally) that theater didn't blow my mind because "it was pretty good for people with Downs syndrome", but because of what they did, because of what it was in and of itself.
>The average IQ of a young adult with Down syndrome is 50, equivalent to the mental ability of an 8- or 9-year-old child, but this can vary widely
Are you sure about that? You want to tell me that trying to live as an adult with the cognitive capacity of a child is difficult because of other people?
Facist? Genocide? What are you smoking? Is it just me, or has a mass hysteria taken over the modern West?
He does not put inhuman expectations on his daughter the way noble savage does it.
As a friend put it, you go through life with your education and career and name and goals and all the self-important things you wrap yourself in. Then you become a parent and it hits you: "THIS is the reason I exist".
This could be said of any systemic discrimination in society, including racism, sexism and others. This is an erasure of their inherent human-ness.
It's a father writing about loving his daughter for who she is rather than who he thought she might be.
Later: Even better for the second sentence there, it's a father writing about loving his daughter for who she is rather than grieving (the loss of) who he thought she might be.
It can be frustrating at times. But somehow isn’t the main theme of our life story.
More than "coping" or "making it ok" it's how mountains get climbed. Try contributing to a story that gets someone to summit a mountain. It's much more fun and satisfying than analyzing a story.
That's the sad state we are in and in my view is getting worse or perhaps I am getting old and cynical.