
My daughter's disabled. Please don't look away from her - helloworld
http://www.latimes.com/opinion/op-ed/la-oe-willingham-how-to-interact-with-a-disabled-child-20180322-story.html
======
coffeemug
This article is great.

The usual advice is "just treat disabled people as people" but it isn't super
useful because humans don't "naturally" treat anyone like anyone. Much of our
social interaction is cultural and learned. So it's extremely helpful to give
specific, actionable advice ("just tell your child to wave").

I have to admit to occasionally looking away, or doing other things mentioned
in the article. It's not because I think disabled people are "worse" or
because I'm an asshole. It's because I get a momentary "shit, this isn't
automatic, what do I do" feeling, and by the time I arrive at a conscious
decision of what to do a few moments later it's too late.

There is a lot of shaming of people that I think would be much better replaced
with education. Most people aren't assholes. They just don't automatically
know what to do. We can fix it by giving people specific actionable norms.

~~~
smoyer
My son has trisomy-21 (Down Syndrome) and I think you're whole post misses a
big point. You have a huge amount in common with a severely disabled
individual (most of your genes in fact). And all it really takes is to treat
them like you would anyone else their age.

If you're running at a park and ignoring all the kids on the playground, don't
stop to greet (or gawk at) a disabled child. If you're greeting all the kids
at Sunday school, don't skip over them (or switch to baby-talk just for them).

So if you default to treating them like any other human, they'll be happy and
you'll make their parents happy. And at this point, parents will happily let
you know if there are any specific ways to interact with their child.

Note: Some kids have aural sensitivities ... don't yell at them like their
deaf during your first interaction. I usually start with a voice slightly
lower than my regular speaking volume.

~~~
pc86
> _I usually start with a voice slightly lower than my regular speaking
> volume_

Which goes against your entire point, doesn't it?

~~~
stordoff
> treat them like you would anyone else their age.

> Some kids have aural sensitivities [...] I usually start with a voice
> slightly lower than my regular speaking volume.

OP says to treat people like you would anyone of that age. I take that to mean
that he speaks to children in a slightly lower voice than he would older
people, regardless of (perceived) disabilities or lack thereof.

------
throwaway234091
As someone in a similar situation, I really need to vent.

Many people look at a situation like this and don't consider the work that
goes into maintaining an extremely disabled individual. Combined mental and
physical disabilities for an adolescent are a full time job. In some
cases(mine) you cannot leave your child alone. Ever. Someone always needs to
be at home when they're at home. Or out with them when they are invited out.
Its suffocating. When you want to go out, its the pain of arranging a baby
sitter but instead of a teenager its a professional who needs 2 weeks advance
notice.

Like this article says: for fucks sake, do invite them out. Do try to engage
them in mental-age appropriate activities. That's the entire reason people
sacrifice their lives for them, to give them the opportunity to be alive. Its
terrifically frustrating to never see your son or daughter when you've given
12 years of full time care for them to do so.

Also, the bit on the 'big picture'. Unless you're looking for an unpleasant
conversation, don't bring it up. There's two options for the future, they die
and you realize your life is gone; or you die and they are never going to
receive the same level of care and attention.

(If you can identify me from this post, I'd appreciate if you didn't out me)

~~~
hycaria
On the contrary, I do consider the work and can't help but wonder : why do you
do this ? Is it pleasurable ? Is it out of hope ? Because not all parents of
disabled children/people go that path, and I can't imagine blaming someone
that decides that giving up everything in life for a lost cause isn't worth
it.

~~~
M_Bakhtiari
>why do you do this ? Is it pleasurable ? Is it out of hope ?

How about they are people of the same dignity as anyone else?

~~~
hmschreck
I think the fundamental disconnect here is that there are, honestly, perfectly
rational reasons to not do this.

A dear friend of mine in high school has a sister with Downs Syndrome who is
13 years younger than she is. My friend's parents have missed out on so much
of what most people view as the good parts of life.

They missed my friend's college graduation because her sister refused to go.
Literally, "we can't make it because your sister doesn't want to go." They
missed their son's wedding and the birth of his first child because of this as
well.

They have to spend tens of thousands of dollars a year on care to be able to
work, and they can't quit their jobs to care for her because of insurance and
income reasons. They are both well into retirement age at this point and they
are forced to work demanding jobs still.

It's put a strain on the entire family, and the only time my friend's life is
ever discussed in any way is when she's making 'wrong' choices. When she
graduate college, she didn't get so much as a congratulations; when her
brother married, he and his wife received a rushed phone call congratulating
them and nothing more.

I am fully on board with the idea that there is an essential dignity to all
people, but I think that asking why people make these choices is still a
completely valid question to ask, especially when you consider the blatantly
deleterious effects that such a choice can have. Even if for no other reason
than understanding, this is an important question to ask.

------
skc
This article hit me hard because I've always tended to look at away from
anyone who is disabled. Partly because I feel I'm being rude, partly because I
don't like to see people suffering (even though in most cases disabled people
aren't necessarily suffering).

But I recently had my first child two weeks ago and leading up to his birth I
was tormented by the thought of him being born with a disability. What would I
do. How would I react to people feeling about him the way I felt about
disabled people? So I subconsciously decided to "man-up" and stop cowering
away from disabled people and embracing them as I would anyone else.

I completely understand where this father is coming from but I feel foolish
that it's taken this long and this circumstance to get to that point.

My son turned out perfectly fine in the end, but I'm glad he taught me a
little something.

~~~
sidlls
Two weeks is not enough to tell if your child is perfectly fine. Not to be
negative, but there are plenty of developmental issues that may not surface
for weeks, months or years. That doesn't change anything of course. Love your
child as if he's "normal" because _for him_ he is.

I have a child with developmental issues (autism). It's mild enough that he
was not diagnosed until last year just before he turned 6. It's hard to treat
him as a "normal" person when he's engaged in stereotypical autistic behavior
(e.g. having a meltdown because today I accidentally broke what routine he
expected just a little bit). But those episodes don't negate the fact that
he's a human and needs (and feels) just as others do.

------
joaorico
This is off-topic, but perhaps interesting to some, and might add some weight
to the opinions expressed in the article.

The author of this article is Daniel T. Willingham. He is a psychologist at
the University of Virginia and author of some very good books on learning,
schools and education.

He is a good, careful and informed thinker on the subject of learning and
children.

I recommend his book "Why Don't Students Like School?" [0] for an insightful
look at one of the pieces of the puzzle that is Education.

[0] "Why Don't Students Like School?: A Cognitive Scientist Answers Questions
About How the Mind Works and What It Means for the Classroom"
[https://www.amazon.com/Why-Dont-Students-Like-
School/dp/0470...](https://www.amazon.com/Why-Dont-Students-Like-
School/dp/047059196X)

------
helloworld
I found this part helpful, but also poignant:

 _Focusing on the commonplace is a good idea if you 're worried about saying
the wrong thing. Remarking on the daily practicalities of Esprit's life won't
make us blink, but we'd rather you didn't bring up the long haul, even with
compliments like, "God only chooses special parents to have someone like
Esprit," or commiserations like, "Sometimes, it all just seems so unfair."

I get it. Esprit can bring to mind big-picture questions about blind fortune
or the mystery of God's plan — something seemingly terrible has been visited
upon an innocent child. But those are the thoughts you shouldn't share with
us. For parents of a severely disabled child, the big picture is dominated by
a future cataclysm. For my wife and me, it's that, although Esprit has lived
nearly 15 years, we will likely survive her. For other parents, it's that
their child will likely survive them. We would rather consider the big picture
at times of our own choosing._

~~~
coffeemug
_> Focusing on the commonplace is a good idea if you're worried about saying
the wrong thing._

This is good advice for most situations where people might get nervous and
don't automatically know what to do (e.g. meeting a stranger).

~~~
matthewwiese
Definitely. The oft derided phrase "How's the weather?" certainly came into
the popular consciousness for a reason. The commonplace can be a source of
great camaraderie; not the banality we usually dismiss it as.

This is one of the more humbling and meaningful submissions I've had the good
fortune to read on HN.

~~~
bonesss
Re: banal small talk

I think it's a misinterpretation that we 'techie types' tend to make that such
small talk has anything at all do to with the content of the words spoken, and
not the act of engaging in person-to-person contact.

"The medium is the message": people initiating (banal! frustrating!
meaningless! boring! impractical!), small talk aren't actually interested in
the weather, they're trying to convey that they're interested in _you_ and
interested in conversing with _you_. The signal isn't the words, the signal is
the face/body engagement.

~~~
munificent
Also, a non-content-containing signal like the weather let's you diagnose
potential issues in the communication channel itself before useful information
gets dropped on the floor.

If I ask you about the weather, your response gives me a chance to calibrate
before we start sharing important information. For example, I may discover you
have an accent that I need to get used to, or maybe you're too busy to talk
(which you'll convey using posture and tone of voice), I can get a sense of
your mood which might affect which topics I choose to bring up.

Once you realize that smalltalk is basically like a modem's handshaking
process, it makes a lot more logical sense.

~~~
gowld
> handshaking

Wonder where that term came from? :)

------
ggg9990
The specificity of what this author wants is what keeps me from even
interacting — the fear of saying the “wrong” thing in one direction or the
other.

~~~
Myrmornis
No, it’s not arbitrary, it’s all quite consistent and in a similar direction.

~~~
ggg9990
I didn’t say it’s arbitrary. But it is specific — “ask me about daily life but
not about the long term” and frankly it is too easy for flawed people like
myself to think “too complicated” and just avoid the situation altogether.

------
jstanley
> Just ask a disabled child's parents whether the planned activity will work
> for their son or daughter. If an adjustment is needed we can figure it out
> together.

I think the possibility of you trying to adjust other people's plans is why
your child doesn't get invited.

That doesn't make it _fair_ , but I suspect there's some amount of truth to
it.

~~~
Rainymood
I think you're somewhat pulling that single line out of context. Here's the
paragraph it's in

>Kids with disabilities want to socialize; the need to affiliate is deeply
human and present in all of us. Children like Esprit may not be able to
participate exactly as typical kids do, but who cares? My wife would not have
been indignant if a playdate had included more babies, so the typical kids
could do typical kid stuff while Esprit watched. Just ask a disabled child's
parents whether the planned activity will work for their son or daughter. If
an adjustment is needed we can figure it out together.

To be honest I liked the article and it makes a good case and has given me a
new perspective. Especially this last one is quite morbid:

>For parents of a severely disabled child, the big picture is dominated by a
future cataclysm. For my wife and me, it's that, although Esprit has lived
nearly 15 years, we will likely survive her. For other parents, it's that
their child will likely survive them.

~~~
theparanoid
I'm doing an internship in a long-term-care facility (one resident has
Huntington's) and there's no easy way to accommodate the profoundly disabled.

~~~
throwaway19834
Thanks so much. I watched my grandfather's decline under the disease and it
isn't a pretty process. Luckily, we had a lot of kind people to support him to
the end, and even to allow him to go out.

Near the end, it was tough. People would think he was drunk because of his
movements, but the staff at a restaurant he was a regular at always made him
feel welcome, even giving him a special parking space near the back door.
Little things like that mean so much.

------
AnatMl2
I've got emotional reading this. Couldn't help it. My best friend had a
brother who had a severe CP (Cerebral palsy).He required a wheelchair and had
significant challenges in accomplishing daily activities. He was 20 when I
first met him and my first reaction was to cry, because I saw how much his
family loved him and how much joy he showed when his mom or sister talked to
him and I felt sorry he couldn't enjoy the life the way I did. So I did the
least I could and I talked to him and told him my stories every time I
visited. I still felt bad though, because his acquaintances were limited to
his sister's and mom's friends and he couldn't socialize. Unfortunately he
passed away at age of 25. We definitely need to come up with some effective
ways to raise the awareness and change people's attitude towards this subject.
I know I will teach my kids to treat people equally, but the situation
nowadays is devastating, especially in the developing countries. I really hope
this will change in my lifetime.

------
meganibla
Completely agree. Even the simple act of noticing people rather than ignoring
as if they’re not entities is so important. Dont feel bad about looking at
people who are different if you see someone disabled just look at them. that’s
very human. In The good way.

Have some empathy. This person has been like this for far longer then you just
walking by them. They’re so into how they are they got over the embarrassment
of being themselves along time ago. You presuming they be embarrassed to be
seen is putting onto them some feeling you don’t know they have. You’re
probably just projecting your own embarrassment. But just look at them.

If you need another reason consider that after the second world war men who
were really messed up physically simply would never go outside. They didn’t
want to be seen. If someone’s outside don’t assume they too embarrassed to be
seen. Don’t feel bad about looking just look.

------
qaq
I think the problem is even in this thread some people in similar situation
express a very different set of preferences on how someone should
behave/interact which in natural as we are all different yet since people are
afraid of offending someone and often have no basis for figuring out how a
particular person feels and "what the rules are" they are afraid to interact
in any way.

------
senectus1
My daughter (7) has a "sighted" (almost completely blind) friend that she
loves dearly... I found it was an interesting challenge to try to think of
birthday parties for my daughter that could suit the scenario where a 7 yr old
sighted child could participate.

What I think I've figured out is that _my_ expectations of how these children
will could have fun was completely different to the children's expectations of
how they could have fun.

ie, I was over thinking it. Just invite them, let them figure it out for the
most part. (but obviously things like movie viewings or go carts we not really
in the running.)

~~~
tempestn
I've never seen "sighted" used that way. I would have assumed sighted is the
opposite of blind. Is it commonly used to mean almost completely blind?

~~~
verylittlemeat
>Sighted

>adjective

>(of a person) having the ability to see; not blind.

Seems that his definition of sighted is non standard. It could be a neologism
on the euphemism treadmill. Example: "neurotypical" not "normal."

~~~
tarboreus
I'm blind and seems to me like this is a simple misuse or misunderstanding.
"Low vision" is usually the accepted term for this in the US.

------
VLM
The whole discussion in the article and on HN fits the general pattern of
communication malfunctions when X is the only X in a sea of Y, which at least
seems to make it universally applicable and everyone's got some advice from
once being the only X in a sea of Y.

Or, are we/I missing something specific where being the only X is unique in
the isolated case of a disabled kid? Something to do specifically with
maternal or paternal instincts maybe?

My point is if we can't define the problem accurately as a general issue or a
very focused issue, then all the discussion will be at the wrong scale, if not
outright wrong.

~~~
tehwebguy
I think it’s just about disabled kids and their parents not wanting to be
treated like they have the plague.

------
Jare
My take, if you are a stranger and run into me and either of my (completely
different) disabled sons:

\- Don't look at my disabled son unless you also look at me. Don't stare, just
look at us like you're trying to understand what we are, not how we feel.

\- Keep emotional reactions hidden. Whatever you are feeling right now, I feel
every minute of every day of my life. You don't hide yours because you don't
care, you hide yours because you care not to make me deal with them along with
my own.

\- Do not do anything about it without asking politely. Whatever I tell you,
it is instant law. Do not even make the gesture to touch anything or anyone,
unless given explicit permission or asked to please do so.

\- I know what I need to do and how I need to do it, I've been doing it every
day for years; you have no idea, and if you think you do you become a
potential danger or aggressor, and you will be treated as such.

That's the baseline. With further contact, awareness and familiarity things
will change.

~~~
tallanvor
It seems to me that with this list of demands you are asking to be isolated.
No matter what you're going through, statements like "Whatever I tell you, it
is instant law." are unacceptable if you want to be a part of society and have
you and your children be treated even somewhat normally.

~~~
Jare
> It seems to me that with this list of demands you are asking to be isolated

I don't want us to be isolated, but safety is more important. Certain
disabilities have little impact on casual contact, while others have A LOT,
but it is important for people to understand that disabilities and the kind of
problems associated with them may not be limited to what they see.

When my autistic son was going through his phase of "I just run off
carelessly", I had to walk with him restrained. Sorry, random passerby, I am
not being too strict with my son, I simply can't afford to let him go off my
grasp for one second because he will run into traffic and die.

When you see my obviously weak other son smile at you, you may feel invited to
touch his face. What you don't see is that his defenses are about as low as
they can be, and your simple and loving touch may be enough to send him to the
hospital. You don't mean it, but you may cause it.

Of course a list like this means you are more isolated than "normal". When you
have stopped your son inches away from a car, or you have held your son with
41ºC fever and his heart beating at 240bpm five minutes away from death,
whoever doesn't want to understand that your needs are not "normal" simply has
no place in your life, because the price may be a dead son.

~~~
tallanvor
I think normal people don't decide to touch a stranger's face, child or not.

But if a child - disabled or not - comes up to a person and says hello and
reaches out to shake hands, it's not inappropriate to reciprocate.

------
commenter1
The problem is, I don't smile to people I don't know. I've sometimes smiled to
babies, but then afterwards I think "Why did I do that?". If I started smiling
and waving to disabled people, that would be me treating them differently than
I do other people. I think that's the last thing disabled people want.

~~~
gowld
> "Why did I do that?"

It's your innate social humanity peeking out. Don't smother it.

------
jasonmaydie
As much as I agree with him, you can't really change human social wiring.

-you're more likely to talk to an attractive person, than an unattractive one

-you're more likely to engage in a conversation with an eloquent person that an stutterer.

-you're less likely to make eye contact with a disabled person compared to an undisabled one

etc etc

It's human nature and there's nothing wrong with that, I think the better
approach is recognizing that and ignoring it rather than flagging it as an
issue.

~~~
gowld
Why not recognize it _and_ flag it as an issue?

------
LifeLiverTransp
Everyone of us is one long airplane travel with a trombus away from becoming
the one stared at and socially isolated.

------
Upvoter33
All I do when I see someone who seems different: smile, maybe say hello. Try
it, it's easy!

------
thrwwy784567435
As a parent of a special-needs child, its great to read such a well written
article and see the discussion here.

Like this commenter
[https://news.ycombinator.com/item?id=16656127](https://news.ycombinator.com/item?id=16656127)
and I suppose like most parents, I also was worried about disability in the
run up to the birth of my child. They were fine at birth, perfectly normal
until 6 months. Then things went downhill fast. I wont go into the details but
you sortof mourn the loss of the future you thought they were going to have.
Then in time you adapt somewhat, and find the positives where you can.

No-one ever puts stats to this, but if you are wondering, a family having a
child have (roughly, according to my research) about a 1-in-200 chance of
having a child with some-or-other rare disability or disorder that will
completely change all of their lives and consume most of their energy going
forwards. As such they end up joining a small but sizeable community of
special needs parents.

When I was younger I didn't really know what to do when faced with a family
with a disabled child (say, at a gathering if they were friends of friends),
so often I'd end up not talking to them.

Now I see how isolating it can be and so I aim to be very tolerant of how
people approach and talk to us, because saying something a bit wrong is surely
better than ignoring us. But I'm still in the early years of this life,
perhaps I will feel differently about it in 10 or 20 years time.

You can see from this thread that there are lots of different views from
parents of disabled kids about how they would like to be interacted with:

[https://news.ycombinator.com/item?id=16655381](https://news.ycombinator.com/item?id=16655381)

[https://news.ycombinator.com/item?id=16656900](https://news.ycombinator.com/item?id=16656900)

[https://news.ycombinator.com/item?id=16656217](https://news.ycombinator.com/item?id=16656217)

[https://news.ycombinator.com/item?id=16656005](https://news.ycombinator.com/item?id=16656005)

Some are easy going, some have very strict rules and for very good reasons. So
how can we generalise this to make it easier for people to communicate with
us?

This, from the article is perhaps key:

> Focusing on the commonplace is a good idea if you're worried about saying
> the wrong thing.

Small talk is a misunderstood and very powerful social tool.

And also this from one of the comments, because if you don't know the kids
condition you don't know how you might affect them:

> Do not do anything without asking politely

------
Myrmornis
What a well-written article.

------
TheAdamAndChe
This an oddly preachy piece trying to tell me exactly how I should behave
around _all_ disabled people, which is presumptuous. Not all disabled people
are mentally retarded, and many of those who aren't don't like getting stared
at by everyone.

~~~
icebraining
The staring part was about (not) preventing your kids from staring, not
yourself.

EDIT: I do get what you're saying; people with cerebral palsy, for example,
are often assumed to suffer from intellectual disability, which is often not
true. That said, I don't think this particular article did that.

