Hacker News new | past | comments | ask | show | jobs | submit login
A Daughter’s Disability and a Father’s Awakening (sapiens.org)
79 points by new_guy 3 months ago | hide | past | web | favorite | 63 comments



My son was diagnosed with Infantile Spasms when he was six months old. IS is a somewhat rare seizure disorder with those affected at great risk for developmental disabilities and autism. I can relate to the author's initial feelings and I also struggled with what I called "dark thoughts" in the first weeks after his diagnosis. Luckily these thoughts passed fairly quickly. It has been a year since his initial diagnosis, and though there have been struggles and setbacks, he is making progress and is the center of my world in a way that I never knew was possible. The experience is definitely causing me to reevaluate my definition of success and ideas of what constitutes a full life.


I have worked with people with Down syndrome in the past, and I must say they are amicable, nice, and with the proper education they can quite compensate for their condition.

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.


> That said, I don't know whether they're part of the "intended" human condition.

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.


> which can be extremely advantageous long-term, despite short-term disadvantages

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.


just because you want down syndrome to be possible, doesn't mean that it makes sense to bring a down syndrome baby to term.


Short term/long term; local minima/global minima — of course, now we are developing gene engineering tech we don’t need to rely on natural evolution, but before that was invented, the possibility of stuff like that is the only reason we got multiple chromosomes in the first place.


Yeah, the point I'm making is not that all mutations are special and natural, which isn't particularly useful: it's that we almost certainly have mutations similar to those that cause Down syndrome in our genetic history, and ancestors who suffered comparable (although presumably different) disadvantages relative to baseline mammals/apes/humans of the day.


> [...]I must say they are amicable, nice, and [...]

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.


The pre-natal tests are routine even here in India - I'm quite surprised they're not in the US.


There are various levels of screening tests available (but not required) like ultrasounds, but the more definitive diagnostic tests (like amniocentesis) are more invasive and carry some risk to the fetus.

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)


Screening generally doesn't affect the fetus and can help make a decision about whether or not to do a more invasive test in the absence of other risk factors. Most screening is also before the timeframe that you're able to perform something like amniocentesis. Thinking PGD (for IVF), NIPT, NT ultrasound, serum screening, other such things...

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.


Yes, screening is non-invasive (and also is not definitive), but is optional and some people refuse even non-invasive screening because nothing will change their mind about continuing the pregnancy "for as long as god intends it".


Your quotation marks seem like you disagree. There are other reasons not to do screening, for example not be faced with the decision to abort or not to abort. Here in Germany, at least in my circles, people tend to avoid such screenings not because of religiousness.


Pre-natal tests are routine, and even free, in California. The state pays for testing that would identify Downs, including NIPT. Unfortunately, you have to do older tests first to be considered high risk and to qualify for NIPT or amniocentesis.


CA's screening program is not free. It costs $220 to participate, although insurance may cover that cost so it is free to the patient. Any followup care for people with fetuses at high risk of a birth defect is covered by the state though.

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!


Thanks for the details. Not free, but certainly routine. I’d be surprised if MediCal and other govt programs didn’t entirely cover this.


There are many pre-natal tests available. I was specifically referring to nipt, which is usually priced around $200-600, and can spot Down and other DNA issues with great accuracy.


NIPT is a relatively new test, and at least in the UK, most people haven't even heard of it. It's very rarely offered on the NHS, and only in some areas. It can be had privately for around £200 though.


This is only somewhat true. Yes, many people with Down’s syndrome can compensate with proper tools and education. But it’s a spectrum. In just one group home I worked in, the ability ranged from non-verbal in one person to another being able to hold down a basic job, carry on conversation, and distribute their own meds.


We have multiple severely handicapped children. One of them was diagnosed with – this is a clinical diagnosis, not a politically incorrect slur – severe retardation early on. This child understands many things but cannot talk, and took 10 years to toilet train (I changed diapers for 16 years altogether). There isn’t enough intelligence to hope this child will ever be able to be self-supporting.

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.


Thank you for sharing. Perspective.

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.


I love the whole gist of this article, but the author writes like an insufferable prick at times.

> 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.


Erm... no?

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


The issue is that some genetic disorders do in fact have characteristic expressions from the physical to the mental. I’m not going to comment on Down’s Syndrome, but plenty of others do with the most striking being William’s Syndrome. It’s one thing to dismiss people as happy, another to make a valid clinical observation, and yet another to attempt to find a silver lining in a moment of crisis.

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.


> The issue is that some genetic disorders do in fact have characteristic expressions from the physical to the mental

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".


It sounds like the hapless doctor was merely trying to offer encouragement. You're ever so slightly twisting his words by inserting an "all" in there, and then trying to make his sentiment somehow culpable, even if in small part, for society's mistreatment of disabled people. That's neither fair nor practical. If even casual, well-meaning platitudes are forced to bear the full scrutiny of your substantial life experiences and associated emotional reflexes, then I fear that anyone who isn't you is better off just avoiding the topic altogether.

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?


> It sounds like the hapless doctor was merely trying to offer encouragement. You're ever so slightly twisting his words by inserting an "all" in there

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).


This is going downhill. You've constructed an impervious emotional barrier wherein people who disagree with you are not only ignorant, but acting in bad faith. Parsing that doctor's four-word verbal buoy in ever greater detail only seems to be feeding your conviction that he, and everyone else who disagrees with you, is covertly prejudiced. This doesn't affect me, and nobody asked my opinion anyway, so believe what you want.

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.


> 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.


If it were demonstrably true that Down's folks are a happier-than-average lot, would statements like the doctor's still rub you the wrong way? Is it the sweeping nature of such a statement that makes it offensive, as much as falsity?


The tone is a bit dramatic, but the criticism isn’t.

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.


We need to talk about groups of people all the time. Yes, even racial groups, e.g.,

"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?


> We need to talk about groups of people all the time. Yes, even racial groups

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.


It's fairly clear that the doctor did not mean that all people with Down's syndrome are happy. When talking about large groups in that manner, the average is implied.

"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.


> It's fairly clear that the doctor did not mean that all people with Down's syndrome are happy > When talking about large groups in that manner, the average is implied.

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.


> it is not a fact that people with Down's Syndrome are happier than other groups.

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.

1 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3740159/


From the paper you linked to:

> 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.


The plank in your eye.


Surprising - in a good way - to see this article on HN. As the father of a young child with Down syndrome, I've felt everything the author expressed. Getting a prenatal diagnosis was one of the hardest things my wife and I have ever been through. (We did the testing so that we wouldn't bring a child with an unsurvivable genetic condition to term. For us, that would have been needlessly prolonging suffering for multiple individuals.) We were fortunate to do our mourning and grieving over the life we imagined for our unborn baby while he was still unborn. And that's what it really is - mourning the ideas and fantasies we put on our children from before they're born. Actually seeing and holding a baby really changes things.

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.


> We were fortunate to do our mourning and grieving over the life we imagined for our unborn baby while he was still unborn

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 :)


> he will be a valuable member of society when he's older

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.


Thank you for saying that. Rereading what I wrote, I did a terrible job expressing what I meant to say. You fixed it for me :)


"certain forms of human diversity are stigmatized as undesirable or perceived as burdensome."

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.


Yes, a father learning to love his daughter for who she is, rather than live in a mire of regret over what could've been is a perpetuation of the 'noble savage' myth.

It sounds like you really don't understand the 'why' of the article if that's what you came out of it with.


You totally missed the point of his post.

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.


They're not harmful delusions.

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.


> People with downs can lead rich and rewarding lives

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.


>By far the biggest harm caused to people with downs is that caused by other people.

>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?


I did not notice any worship in article. It was merely the acceptance and personal relationship.

He does not put inhuman expectations on his daughter the way noble savage does it.


Bingo. While I don't blame the author for trying to cope with his situation, I will say that, as one who has a disability myself (only 10% of normal visual acuity), it is quite "undesirable" and damned well "burdensome".


[flagged]


Wow, the patronization just drips off this comment.


I have a 20 months old daughter - who does not have DS. This was very tough read. I used to think of myself as a tough guy, but ever since my daughter was born boy i am the weakest of all.


Caring for someone else is not weakness.


No doubt.

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".


that missing comma made me reread that last sentence way too many times!


> Our cultural emphasis on individual achievement is dangerously selfish and tethered to a value system that degrades entire groups of people who are stigmatized as existing outside the boundaries of normalcy. But these boundaries are arbitrary, and the very category of normalcy is a fiction.

This could be said of any systemic discrimination in society, including racism, sexism and others. This is an erasure of their inherent human-ness.


We were at a restaurant and a boy with Down syndrome cane and hugged my wife. I was very moved by the love the boy was showing to a complete stranger. He would come back and hug her over and over. I tear up thinking about that experience.


This whole article reads like an attempt by the author to convince himself that having Down Syndrome is not bad, not limiting, doesn't make you different. And I understand why - having a child with this syndrome would be incredibly challenging and probably the only way to cope is to restructure your world view so as to "make it OK" - but there's definitely a strong thread of denial running through it.


There's no denial in the article.

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.


I usually compare it to other misfortunes most, if not all, of us suffer from. Like then sad fact that we are born without wings or gils.

It can be frustrating at times. But somehow isn’t the main theme of our life story.


People do things they never thought they could only when they tell themselves the right 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.


The denial and anguish were clear in the beginning of the article, but later on it moved from that to just considering his daughter as a daughter. I didn't see any denial lingering around after I finished reading it, but the article did have an aptly-needed lament over the state of the society around (that discriminates against these people in different ways).


> that discriminates against these people in different ways

That's the sad state we are in and in my view is getting worse or perhaps I am getting old and cynical.




Guidelines | FAQ | Support | API | Security | Lists | Bookmarklet | Legal | Apply to YC | Contact

Search: