
A Daughter’s Disability and a Father’s Awakening - new_guy
https://www.sapiens.org/culture/down-syndrome-baby/
======
bdurbin
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.

------
alanfranzoni
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.

~~~
saalweachter
> 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.

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

~~~
ben_w
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.

~~~
saalweachter
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.

------
tomcam
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.

~~~
trentnix
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.

------
nate_meurer
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.

~~~
GordonS
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

~~~
toufiqbarhamov
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.

~~~
GordonS
> 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".

~~~
nate_meurer
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?

~~~
GordonS
> 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).

~~~
nate_meurer
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.

~~~
GordonS
> 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.

~~~
nate_meurer
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?

------
vtbassmatt
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.

~~~
nate_meurer
> _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.

~~~
vtbassmatt
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 :)

------
Causality1
"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.

~~~
fzeroracer
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.

~~~
fromthestart
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.

~~~
DanBC
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.

~~~
PavlovsCat
> 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/)

[https://rambazamba-theater.de/programm/](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.

------
jackallis
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.

~~~
trentnix
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".

------
newscracker
> 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.

------
hi41
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.

------
taneq
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.

~~~
maxerickson
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.

~~~
CuriousSkeptic
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.

