My daughter's disabled. Please don't look away from her
latimes.com
latimes.com
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.
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.
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.
Which goes against your entire point, doesn't it?
> 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.
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.
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?
No. And no-no.
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.
That's sufficiently bizarre that I assume you misread the original post... (I'm applying Occam's razor).
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.
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.
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.
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.
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.
>> 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.
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)
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.
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.
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.
How about they are people of the same dignity as anyone else?
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.
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.
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.
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.
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.
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.
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.
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...
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.
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).
This is one of the more humbling and meaningful submissions I've had the good fortune to read on HN.
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.
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.
Wonder where that term came from? :)
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.
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.
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.
>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.
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.
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.
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.
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.
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.)
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.
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.
>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."
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.
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.
- 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.
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.
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.
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.
I don't think you need to worry about further contact after this list.
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'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.
It's your innate social humanity peeking out. Don't smother it.
-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.
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
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.