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My daughter's disabled. Please don't look away from her (latimes.com)
415 points by helloworld on Mar 23, 2018 | hide | past | web | favorite | 150 comments



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.


For me it's usually an attempt to not come across as staring. A lot of people grow up hearing "don't stare!" when it comes to people who look different because it's rude. So it's really hard for me to shake that. I don't look away because I'm weirded out by a person or because I think less of them. It's because I don't want my initial glance to be mistaken a stare. It's ironic that apparently that can come across as rude as well. Then again I'm socially awkward and struggle to make eye-contact with non-disabled folks just as much.


Next time you're caught "maybe staring", try this: Smile or nod and then look away, instead of rushing to look away. You might be surprised how many smiles and nods you get back and return, and realize that most people are happy to have a moment of mutual acknowledgement.

The key is to consciously acknowledge that you were looking at someone, and realize that you are forced to "justify" your look -- was it innocent and friendly, or creepy and rude? If it was innocent and friendly, then commit to it! If was creepy and rude, you messed up, do better next time.


If someone did this to me, I'd probably smile and nod back. But I'd also spend the rest of the day confused and worried why I couldn't remember who the person was who greeted me like a passing acquaintance.


Lean into that uneasiness. In addition to a nod, give them a long meaningful wink also. Then instead of an awkward accident, you have a fun puzzle for everyone think about for years afterward. Practice this at bars when you accidentally make eye contact with someone and be at peace with the beautiful chaos that will 100% ensue.


That's OK. Maybe you'll see them again next time you go around the same way, and you'll remember this time, and you'll start building a relationship with your neighbor.


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.


In fact your whole post misses the grandparent post's point. Their point was that they _absolutely intend to do_ what you just said. However, very little of what we do as humans in conscious decisions. Most of it is autonomic pattern response.

Forgetting disabilities for a moment: if you are not used to being around _children_ then the first time you are surrounded by them you'll act completely weird. Because they are different than you're usual pattern. With sufficient exposure you adapt, you integrate that slight variation into the pattern and all is well. For some patterns you act differently (you act different for children than adults) for some you won't act differently (for most disabled children you act the same as for other children) but in all cases exposure is the key because we humans are imperfect pattern recognition machines.

Also though, some people are just assholes. I mean don't baby talk to anyone ever.


People don't treat others all alike. We naturally interact with people of different genders, ages, and in different contexts differently, and continually pick up social cues (such as how loud or forward someone is) and change our behaviour with regard to the situation. When people are unfamiliar with the signals they perceive from others, this usually causes them anxiety. Clearly, with your experience of interacting with disabled people, you've become accustomed to it; you know to speak with a quieter voice for instance. Most people do not have much such experience, and feel uncomfortable because of it.


> I usually start with a voice slightly lower than my regular speaking volume

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


> 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.


Well, maybe they mean when talking to children. That does not.


No, it doesn’t.


This is such an important point. The world would be a wonderful place if we defaulted to feeling an enthusiastic opportunity to pedagogically and patiently teach people something when we notice they're naive about it (instead of shaming or dismissing them as stupid).


There's always a relevant XKCD: https://xkcd.com/1053/


"..social interaction is cultural and learned.."

or may be, just may be we are genetically programmed to avoid things which starts uncomfortable thought process.

"They just don't automatically know what to do"

This might not socially acceptable thing to say out loud, may be, people don't have _enough_ time or inclination to imagine other people's condition in everyday life.

Like you remembered some cases where you looked away, there might be more cases where you didn't even notice that somebody disabled was around you.


Dogs will naturally break away from your gaze if they're not sure they could take you in a physical confrontation.

That's not cultural.

Some things are just built into us, not that we don't have the power to override them through the application of will but they didn't just appear out of nowhere.


Your comment is a great follow up to the article. I am copying(with slight modifications) a few actions highlighted in the article.

>> Staring isn't staring if you're smiling. Or waving. Or if you say hi. Adults- do stare but do it smilingly or say hi

>> Just tell your child to wave.

>> And don't worry if he(your child) asks an awkward question, like, "Can't she talk?" That's a welcome chance for us to introduce Esprit.

>> 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.

>> A nuisance like leaving a picnic early is normal (for parents with disabilities), so don't make a big deal out of an annoyance with a portent-filled comment like, "I don't know how you do it."

>> They desire the human contact that most of us take for granted. So increase your awareness, by reaching out to one of them.


And like most things, the cure for fear is exposure. The more time you spend with disabled/diverse/different people, the more natural it will feel to you, and the less weirdly you will act. This goes for your encounters with people with visible disabilities and differences, mental disabilities and differences, racial differences, linguistic differences, religious differences. . .


This brings up an interesting insight that it's not realistic to treat "people as people". A lot of people have trouble interacting with the opposite sex. Or even with someone outside their friend circle. In an Asian village, people might freeze on meeting someone black or white.

They're not really assholes, but they get confused on how to act and may overcompensate. Is it appropriate to smile at a coworker of the opposite sex? Or to instant message them about work late at night? This can result in a lot of strange reactions.


Is it appropriate to smile at a coworker of the opposite sex? Or to instant message them about work late at night?

It depends on your intent. If you are trying to be a creep and looking for "innocuous" ways to start moving in on an intended victim, then, no. If you are a decent human being with genuine respect for other people who isn't up to anything creepy, it's totes fine.

In fact, you should not be treating members of the opposite sex as "off limits" socially merely for being the opposite sex. This is a form of sexism and it insidiously closes a lot of doors.

So just be really honest with yourself as to why you are smiling at them or messaging them and if the answer is "I have plans that amount to sexual harassment," yeah, no. If the answer is "They are a coworker and that's how I interact with same sex coworkers," go right ahead. You're fine.


You are absolutely right in principle, but following your advice requires a lot of introspection and self-awareness, but the reality is most of our actions are half-conscious at best. The challenge is in how to improve our automatic behaviors, and how to trust that they are reasonable.


It's fine if you just like the person as a human being and are reacting in the moment. It isn't necessary to know ahead of time where this is going. We often don't. Life happens.

But the point at which you realize that you are a. Attracted and b. Trying to maneuver the person -- This is the point at which you need to have a heart to heart with your conscience. If you realize you want them and you don't really care if the feeling is mutual, then you are a creep. (The generic "you", not you the person I am speaking to at this moment.)

People do sometimes meet on the job, date, fall in love and get married. That can happen if both parties are equally aware of the potential pitfalls and both parties are equally looking out for the welfare of both people.

What separates a creep from an ordinary person who might happen to stumble into romance on the job is that creeps a. Make conscious and intentional plans aimed at a particular outcome and b. They do so with callous disregard for the other party.

Decent human beings who realize they have slippery sloped themselves into an awkward situation that might harm another start working to figure out how to avoid said harm. They don't have to be omniscient geniuses who can predict it ahead of time. They just have to decide to make other choices once the problem space becomes apparent.


Life is full of mistakes. Try to be your best; forgive your past self; learn from your experiences; keep practicing.


Just to be clear, in case there are people actually wondering:

> Is it appropriate to smile at a coworker of the opposite sex? Or to instant message them about work late at night?

No. And no-no.


Wat? You just stated that it's inappropriate to smile at a co-worker of the opposite sex.

That's sufficiently bizarre that I assume you misread the original post... (I'm applying Occam's razor).


So I need to treat coworkers of the opposite sex and not smile at them? I can only smile to workers of the same sex? Isn't that a form of harassment? Can't I just treat all coworkers the same regardless of gender, sexual identity, race, etc?

Likewise, if the on-call engineer is female, I'm going to text or even call her late at night if I need her help.


I agree about messaging someone of any gender about work at night (without prior agreement), but why would it be wrong to smile at a coworker no matter who they are?


I disagree about messaging coworkers at night. I do it occasionally. Sometimes it's about something humorous, instructional or enlightening that I stumbled on while at home. Other times, it's serious and about work. I've had very productive and candid discussions with my CEO at 11pm. If I have something useful to share, I want to do it while I remember about it, instead of trying to remember the next day.

Thing is, when I randomly message someone at night, I don't expect a response, nor do I view my recipient unfavorably if they don't respond until morning or at all. Of course, it's different if the entire team is working late, but that's only happened a few times in the past 2 years I've been at my current company.


I'm going to carry on smiling at people, irrespective of gender. Sorry.


WTF? You can't smile at a coworker of the opposite sex? Since when? They smile at me often enough. It's a smile, which is a form of acknowledgment.


So many different rules to behave. I just gave up and react to everything the way I am. If I’m not good enough, then at least it’s honest and as is.


I don't think there's anything wrong about instant messaging anyone on a work-approved platform, about work, at any time of day. Expecting a real-time response is unrealistic though.


[flagged]


If your citation is intended to suggest your usage of "retarded" is reasonable, you may wish to read further down the page:

> The Arc called the portrayal [of a man with an intellectual disability] "offensive" and also objected to the use of the words "retard", "moron", and "imbecile" throughout the movie. [...] the Arc continued to criticize the film as containing hate speech, promoting offensive stereotypes of people with intellectual disabilities, and being offensive to people with disabilities and their families.


Goldenkey might be referring to the euphemism treadmill mentioned in the summary of that article; the never-ending cycle of replacing neutral words for a group of people when they have (inevitably) shifted in meaning to a pejorative (like 'imbecile' and 'retard').


"a retard" is different from "retarded person".

Tropic Thunder mocked retarded people, it didn't use those terms in neutral usage.

Tropic Thunder was all about putting offensive stereotype behind a layer of indirection ("actors playing actors playing X", and used that layer to dodge criticism, but it's a complex scenario to try to untangle. Much of the entertainment value that the audiences perceived was in "making fun of X", not "making fun of actors playing X"


From Arc's broader statements made at the time, I'm not sure they would agree with your first statement, or agree that there _is_ a neutral usage:

> “In our culture, `retard’ and `retarded’ carry a lot of baggage from the days when people were institutionalized in large state facilities,” [...] They don’t deserve to be treated in such a dehumanizing way.”

> Leaving aside the movie’s offensiveness or lack thereof, the uproar also serves to highlight the evolving standards of acceptable terminology [...] “Adults with retardation self-advocated. They clearly told us that the use of the word `retarded’ was very hurtful.

https://www.dailynews.com/2008/08/13/some-give-tropic-thunde...

FWIW, I don't necessarily agree with them in totality -- I have various disabilities and have zero issue with "disabled person" or "the disabled" (unlike the linked article) -- but linking to Arc doesn't appear to support the use of "retarded", even where the intent is neutral.


Thanks for clarifying. Fun fact, in the years since "person-centered language" ("person with X") has now also fallen to the euphemism treadmill, as modern advocates say it stigmatizes the disability X by separating from the person as a modification, instead of accepting it as part of a respected whole person.


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)


I do consider the work that goes into it but I don't understand what I can do about it.

It's like encountering a person lugging an enormous cross on their back, beyond gawking at the cross and chatting about how heavy it must be I'm not sure what I'm supposed to do.


Talk about the weather, talk about current events, talk about video games, normal stuff..? People don't want to be reminded of the curse they've been afflicted with, especially if it isn't going to help change it. This goes for anyone who has a handicap. The handicap is always on a scale of 1 to 10 where at 1, it doesn't define the person, and at 10, their whole lifestyle is constrained. But nomatter what, no one on that scale wants to be reminded of a curse that is so vicious it affects so much of their life. Treat them as a person first, and maybe if you get to know them, then you can ask about the affliction.


Help whenever possible?


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.


I don't understand the question. Are you asking why someone wouldn't abort their child?


This is not always possible, and that's not what I meant (although there's still abandon in the same vein).

There are institutes where they can be housed and cared for, instead of having to care for them 24/24, at least where I live. Most end up there by adulthood anyways, considering how hard it is to care for adults compared to children, especially when you're aging, and come back for week ends or the like.


It's incredibly expensive to do this. Most people can't afford it especially since one of the parents generally has to spend most of their time with the child forgoing work.

Yes, there are programs in most states to help the parents in this sort of situation, but most of these programs let the benefits run out when the child reaches around 21-25 years of age.


Maybe you have children, and maybe you don't, but in general the human race's survival is in large part due to parents having a deep emotional bond with their children.


One must really think very low of it's own life to enslave himself that way, that's all I'm saying. And when I see such posts or parents testimonies, they all seem fed up with their situation, and rightfully so. And it's not all because of society, and they do have a choice.


Of course, but that's what parenting is, to a huge fraction of people -- it's innately recognizing that children displace parents, generation after generation. It's not because of society, it's the cause of society.


But we're talking about children that are not going to displace their parents, because of short life expectancy, or absolute dependency on others, or limited intellectual capacities...


My mom is a special educator and she mainly works with autistic children.

She had this one child that was severely non-verbal, she did everything in her power to get the County school system to do the right thing but they refused to give her the classes she needed. So, long story short, the parents refused to give up and told their Pastor. The Church went to court and won and the kid got their services. The kid afaik is still non-verbal but is doing much better.

When my mom asked the pastor, why the church went to bat was because they had hope that the kid would get better and it was the right thing to do.

Now, I say all this to say this, that people will do what they think is right. They want their best for their children just as the parent who stubbornly got their church to go to bat for them. And the parents who put their children in homes want the best quality of life.

And I don't necessarily see them as giving up, we perceive that, but I feel deep down, they aren't. They want whats best for their kid.


Because there's an emotional attachment, because you realise that, while the child may not be able to to enjoy the full range of what life has to offer, in the majority of cases the support and love that you have to offer will be better than the care offered by an institution. The momentary smile is quite rewarding.


I get this, and I’m sure if my kid was in this situation I’d feel the same way. For all of the kids who aren’t mine though, I can see the other poster’s point. That’s just as much a part of being human as being attached to your own offspring.

In other words, I’m not going to stare, or look away from a disabled kid. I’m also not going to invest emotionally, or go out of my way to change how I think and act day in and out for them. If someone asks me for help, I’ll help, but they’re not likely to register for me otherwise. I won’t look away, but I also won’t look; disability doesn’t make me more or less invested in strangers.


>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?


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.


Kind of a rude response to an honest question. The point of the question is that taking care of a severely disabled child takes some dignity out of the parent's life. Their whole world for however long that child is alive is about that child and only that child. It's appropriate to ask what the motivating factor is, because the answer isn't always obvious to someone who doesn't have to think about taking care of a disabled child.


This post brought me to tears, and made me feel incredibly guilty. First: Thanks for the work you do and for being such a decent human. Second, will heed your advice strongly and make an effort to also invest in the labour of yourself and folks like you, my apologies for not being cognizant of this till fact my 32th year.


"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." I've got to say thanks for writing this and making me think about that. It's a great perspective that I don't have as a dad to kids with no special needs. I'm sharing both this article and your comment with my family, because we're as guilty as everyone else in this society of being in the "don't stare" class but not doing much else. And beyond just sharing it, we're going to really try to take it to heart. There are certainly kids and families we need to make an effort to be friends with!


Brutal but true. Caring for someone with developmental challenges is a calling that not many can handle.


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.


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.


>> My son turned out perfectly fine in the end

your son has plenty more opportunities to be other than fine in so many possible ways. Perhaps he'll even do it to himself.

We can all keep striving to be less binary when assesing other people.


“Perfectly fine” —- well, you’re only two weeks in! Enjoy the wild ride :)


Hahahahah. "2 weeks" is when they finish the 2-week post-natal nap and the excitement begins.


> I don't like to see people suffering

That's quite rude, but common. People suffer whether you look or not. The discomfort you feel is your instinctive recognition that something is not right, and you can fix it or flee it. Usually people flee.


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...


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.


> 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).


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.


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.


Yes, small talk is important in lots of subtle ways, took me a long time to get over adolescent 'doh small talk is stupid' and appreciate this. What to aim for is to know when and how to move beyond the small talk into more interesting territory


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.


> handshaking

Wonder where that term came from? :)


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.


As someone in a similar situation as the author, I actually agree with you.

It is perfectly normal that people who are not in similar situations don't know how to interact with such children and their parents, initiate, respond, or continue a topic. So I am fine with most remarks people made that the author may find uncomfortable or offensive, unless the remarks are bluntly inappropriate or offensive even to the ears of parents of normal children. For example, since I am not religious, it is really annoying to bring God into the topic, "there must be a purpose", etc.

I agree with the author that please invite our child to your party, to have a playdate, etc. We understand it means the hosts will put in extra efforts to accommodate our child. We greatly appreciate it. We will do our best to make it a less burden. For example, it is OK to invite our child for a swimming party, although he won't swim. He would be very happy to watch other kids play in the water.


Yeah, I definitely have that same fear of saying the wrong thing. But all the specifics aside, maybe the author is really saying, try to behave as you would in other situations: Be kind, be inclusive, and don't worry too much about unintentionally offending the parents, who (alas) have probably seen and heard it all before.


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


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.


> 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.


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.


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.


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.


Play dates are not just for the child. They can be a vital social activities for the parent(s), or a chance for the "visiting" parent to leave their child somewhere safe (and free) and have some time out.

Adjusting a play date is very common. Like everything to do with parenting (at the age where play dates are common), flexibility is key. Everything from timing "We will be 20 minutes late, Jane is still napping" the environment "Thanks for inviting baby Thom also, can you try to keep him on a blanket as he is allergic to grass".

No parent will begrudge a reasonable change, as the expectation is that these are reciprocal. If you host a play date, you expect to attend one - with any changes needed to accommodate your child being taken into account.

It's much more likely to be the other parents discomfort and awkwardness around the out-of-ordinary care needs of the disabled child.


According to the author, the invitations stopped before there was any attempt to adjust anyone's plans:

I started to see the discomfort people feel in socializing with disabled kids when Esprit reached 6 months. Until then, my wife was invited to playdates, where she and another mom drank coffee while the babies gurgled on the floor. The invitations stopped when the other kids could sit up, something Esprit wouldn't do for years.


The only adjustmnent being asked for there was an adjustment of expectations.


Also "just ask" is quite an oversimplification. I'd have no idea how to even talk about it.


I think that's the point of 'just asking' :)

As a parent of a disabled child, I understand that people might feel uncomfortable talking about disability for fear of offending, or just because of a fear of the unknown. Parents such as me haven't always been parents of disabled children - we've been where you are!

So please talk openly - just ask. Nobody can think badly of you for trying to learn more. Parents will help you out if needed, nobody will take pleasure from watching you squirm. Just trying to be inclusive will be appreciated.

As far possible, I believe children with disabilities should be integrated into normal schools and normal life in general - we can't change attitudes by segregating our children into 'special' schools and groups. When disabled people are as visible as 'typically able' people, then things will begin to really change.


The article isn't about "how self-centered people can change their behavior" which is obviously irrelevant; it's about how people who _want_ to be part of an inclusive society can succeed at it.


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.


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.


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.


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.)


Sighted is the term used to talk about people who are not blind, low vision, or visually impaired. The best ter for the person you're talking about is probably low vision, but many low vision people use the term blind as well. Most blind people are not, in fact, totally blind, only about 10%. I call myself low vision, for example, but sometimes use the term blind.


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?


>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."


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.


It might be a reaction to the fact that the common English word "blind" tends to convey total inability to see, whereas many legal and medical definitions involve "merely" serious impairment of certain definitions. One of my sons is legally deaf and legally blind, which puts us in somewhat rarified territory even by disability standards on the one hand (merely a few hundred in the state of Michigan), but on the other hand, he lives life mostly like a person with sight and hearing. When we go to some of the gatherings, many of the other "deaf blind" people are also able to significantly function with at least one sense. He is neither "incapable of seeing at all" nor "incapable of hearing at all".


Would "partially sighted" or "largely blind" (or similar) not cover that, depending on severity? It certainly seems like a better choice, or more likely to be understood, than using a word that has the opposite meaning in common use at least.


Possible games during a party:

Pin the tail on the donkey

Piñata

Make sure the sighted friend wears the blindfold too to make it a shared experience, and so other children who don't understand know the friend isn't cheating.


> Make sure the sighted friend wears the blindfold too to make it a shared experience

Thise are good ideas, and this is quite a nice thought.

On a somewhat related note, as far as possible, we try to let our disabled daughter experience age-appropriate activities that her peers engage in (even if they have to be modified somewhat). This models good behaviours for her, and often helps encourage her to do things she'd otherwise be unwilling to eveb try, for fear of failing.


Many courses have 2-seater go-carts. I think that could be an absolute blast.

Have you tried games that involve blindfolds - pin the tail on the donkey, blind man's buff. I suspect your daughter's friend might find that rather funny.


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.


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


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.


I'm a parent of a disabled child, and I'm afraid I think your attitude actually contributes to the problem - people will naturally be scared to offend if parents think and react as harshly as you describe.

Try to put yourself in other parents' shoes - don't forget that you weren't always the parent of a disabled child, and it's possible you would have felt just as awkward as them.

Yes, people sometimes say something that you find offensive or demeaning, but they mosty likely didn't mean it to come across like that. Instead of reacting harshly, try to subtely educate them - for example, if someone said "Oh, she's Down's Syndrome", I might respond with "yes, she has Down's Syndrome", with a subtle emphasis on the has - my daughter has Down's Syndrome, but she is not Down's Syndrome itself. Or if someone said "does she have a mild case of it?", I might respond by explaining more about the various issues and degrees of those.

The point is, most people are ignorant of a lot of disabilities and surrounding problems - that doesn't make them bad people. And - when given the opportunity - most people want to learn more. I see it as "doing my bit" to help educate people, rather than reacting harshly and turning them off for good.


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.


> 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.


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.


It seems that the author is talking about occasions where a stranger steps in to 'give a hand'. I think you too would react like this, when a total stranger comes up to you and touches you, even if it was to remove some dirt from your coat? Appearantly, there are some people who seems to think that because a person is disabled, the normal rules with respect to touching, no longer apply, and that you are free to touch a disabled person, either to help them or to pad them on the head.


I think that statement asks that you let the parent have final say over how you interact with their children, not that you cater to their every whim because their child is disabled.


>With further contact, awareness and familiarity things will change.

I don't think you need to worry about further contact after this list.


That's funny but wrong.


This sounds like you experienced some nasty stuff. Is this true or are you just cautious? From personal experience I’ve seen people not knowing what to do but never acting aggressive or offensive towards a disabled person, so I’m a bit surprised.


Just not knowing what to say or how to behave is quite common, but nobody will think I'll of you if you simply ask well-intentioned questions out of ignorance - parents of children with disabilities haven't always been so, and have probably felt the same as you at some point.

But... a few people really are just hateful bastards. Mostly adolescent young men, but sometimes parents too. I'm sure you know the type - those that seem to take joy in hurting those they perceive as being weaker than them in any way.

As a parent of a disabled child, it really breaks my heart thinking about how these things affect children with disabilities.


This is the problem with articles above. The author of the article only speaks for 1 part of the community. The parent post here speaks for another part of the community. There is no authoritative voice. So you could follow the article's advice and offend the above parent.

It's literally a no-win situation, which is why not looking is usually the best choice because it's hard to accuse someone of being offensive if pretend you don't even notice them.


Right, you should never talk to anyone under any circumstance, since no two people are the same and you cannot predict how everyone will react in every encounter. Is that right?


Reductio ad absurdum


Jesus. What makes you think you are so special? And if you think you are, then you are part of the problem. I for one, shall not be changing my behavior to suit yourself.


And that's OK! Parent poster was giving advice for people who want to be part of a human society. If you want to cut yourself from humanity and interact only with people you can extract one-sided profit from, that's your choice; and I suspect parent is happier that you go one your way, as far away as you can.


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.


> "Why did I do that?"

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


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.


Why not recognize it and flag it as an issue?


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


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


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 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=16656900

https://news.ycombinator.com/item?id=16656217

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


What a well-written article.


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.


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.


[flagged]


I recall when we were pregnant with one child, our pediatrician told us that the test to detect <a bad thing> had a greater chance of _causing_ some other kind of damage than the chance of our child having the <bad thing> (I forget which). So, please consider that the parent made the best choices they could, and sometimes that means judging the risk of damage versus the chance of having some condition that could have been discovered by a test.


Like other common chromosomal defects, T18 can be detected with a routine noninvasive first trimester ultrasound screening with 95% recall.[0]

Assuming someone received common prenatal care, this would have been detected, at which point termination would have been discussed. If you have the facts, you make the choice of whether or not to have severely disabled child. And make no bones about it, refusing to choose, is a choice.

While we're discussing this, it's important to mention that prenatal screening can only occur late in the first trimester, or more typically early in the second trimester. It's impossible know if physical abnormalities will develop, until they actually start to develop, and that just takes time.

If a screening test indicates a defect, you need to come back for a more detailed diagnostic test. Assuming you can schedule the tests and get the results back quickly, you're hitting up against 20 weeks.[1] 20 weeks -- not coincidentally -- is time that anti-abortion activists target banning abortions.

[0] https://christianacare.org/services/baby/maternalfetalmedici...

[1] http://www.slate.com/articles/health_and_science/medical_exa...


First trimester ultrasound screening is far from perfect.

For a 30-year old woman, the T21 detection rate is only 84%[1] - and the false positive rate is high at 4%. As age increases, so does the false positive rate - up to a whopping 67% at 49.

So even if you were told the test detected T13/18/21, a decision to terminate the pergancy could mean terminating a healthy fetus. A terrible decision to make.

But there is some better news - there is a relatively new screening test, the so called "Harmony Test", which is a type of non-invasive prenatal test (NIPT) that involves drawing blood from the mother and looking at the fetal DNA that is present[2]. For the most common genetic disorder, T21, the false positive rate is less than 0.1%[3], or 0.3% for all 3 disorders combined[4].

However, at least in the UK, the test is only available privately for around £400.

[1] https://www.ncbi.nlm.nih.gov/pubmed/11702835

[2] https://fetalmedicine.com/harmony-test

[3] https://sequencing.roche.com/en/healthcare-providers/nipt/fa...

[4] http://www.rapid.nhs.uk/guides-to-nipd-nipt/nipt-for-down-sy...


I didn't make clear in the first paragraph, but ultrasounds are screening tests, not diagnostic tests. The expensive blood tests are diagnostic.

Screening tests are inexpensive, low risk, high recall (i.e. high true positive) tests meant to indicate if high precision (i.e. low false positive, low false negative) test is warranted. Often the diagnostic tests are more invasive, potentially riskier, and more expensive.


I get what you mean, but personally I find the accuracy of the 1st trimester ultrasound to be so poor as to be unhelpful.


You can now test fetal DNA fragments in maternal blood (cffDNA) to detect trisomies with high specificity and sensitivity-- though a positive result is only ~50% confidence, and needs follow-up screening with a riskier method for confirmation. The 0.7% miscarriage risk from follow-up CVS or amniocentesis is more justified in that case.

http://www.nejm.org/doi/full/10.1056/NEJMoa1311037


The child in this article is 15, so in 2003 did we have the sophisticated tests available that are as easily applied?

Additionally, whilst testing has become better, it won't catch everything unless we look for it specifically. There are mosaic mutations that are incredibly difficult to spot and many other chromosome conditions that we are only now able to define because of our more capable tests (http://www.rarechromo.org/disorder-guides).

Finally, no one 'decides' to have a disabled child. I don't know what you actually meant to convey by your comment. Perhaps a judgement on the impossible decisions parents of children with disabilities wrestle with, perhaps a dismissal of all people with disabilities because testing means they shouldn't exist.. I can't quite understand it.


just to respond to a specific part of your post, people can decide to adopt a child with a disability.


ah.. of course, yes.

I was just responding to the specific language in the parent post that seemed to convey that the author of the article knew about the disability and 'decided' to have the child regardless of this 'fact'.

Of course, there are some wonderful wonderful people in this world who find themselves being adopted by equals.


Just remember that neither the parents or anyone here is asking for any kind of mercy. You are talking about something that has nothing to do with the article. The article is asking for humane treatment and you basically say that she could have been aborted. Maybe you need to check your empathy.


This comes across as dismissive, insensitive, judgmental, and even cruel.

Firstly, you don't know if it was detected prenatal. Secondly, unless you've been there (I haven't) you cannot possibly know how difficult and heart-wrenching a decision that must be.


The typical test done in the UK at least only tells you the chance, and cannot always be performed. The only test that gives you certainty also carries a risk of miscarriage.

It is not as simple as you make out.


> The only test that gives you certainty also carries a risk of miscarriage

Not true any more[1]. See my other comment in this thread about the Harmony/NIPT test (it's not available on the NHS tho, but is widely available at a cost of around £400).

[1] https://fetalmedicine.com/harmony-test


I think the detection rates are significantly different. Your link shows that for trisomy 18 there's a 3% false negative rate with the Harmony test. I think the false negative rates are significantly lower for CVS.


CVS is indeed very accurate (97.5-99.6%[1]), but still has a false positive rate of ~1%[2]. But as you noted, CVS has a small risk of miscarriage, and for that reason many couples wouldn't even consider it.

Of course I can't speak for everyone, but I would guess that for most couples the biggest concern is T21 (it is the most common of the three), and the NIPT test is 99% accurate for that. Balancing the risks, and false positive and negative chances of NIPT vs CVS, NIPT seems more valuable to me.

[1] https://patient.info/doctor/chorionic-villus-sampling-pro [2] Mayo Clinic Complete Book of Pregnancy & Baby’s First Year. Johnson, Robert V., M.D., et al, Ch. 11.


Thanks. Are there figures for the false negative rate? I was struggling to find those.

It's certainly a reasonable option, but the context of the original comment saying that the parent would have known (or had the option to know) that the child had T18.


I didn't find false negative figures specifically mentioned as such for CVS or NIPT, only accuracy and false positive. I've assumed false negative == 100 - accuracy, but in reality results might also sometimes be "uncertain", which wouldn't count towards the false negative rate.


This comment comes across in a very callous way.


Also remember: virtually none of us have been in that situation, or know the context, so any kind of judgement about it is ridiculous.


Do you know it _was_ detected? Seems at least possible there was a false negative.


Ignorant and unnecessary.




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