My daughter's disabled. Please don't look away from her

415 点作者 helloworld大约 7 年前

20 条评论

coffeemug大约 7 年前

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.

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throwaway234091大约 7 年前

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)

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skc大约 7 年前

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.

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joaorico大约 7 年前

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" <a href="https://www.amazon.com/Why-Dont-Students-Like-School/dp/047059196X" rel="nofollow">https://www.amazon.com/Why-Dont-Students-Like-School/dp/0470...</a>

helloworld大约 7 年前

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.

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ggg9990大约 7 年前

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.

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jstanley大约 7 年前

> 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.

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AnatMl2大约 7 年前

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

meganibla大约 7 年前

Completely agree. Even the simple act of noticing people rather than ignoring as if they’re not entities is so important. Dont feel bad about looking at people who are different if you see someone disabled just look at them. that’s very human. In The good way.Have some empathy. This person has been like this for far longer then you just walking by them. They’re so into how they are they got over the embarrassment of being themselves along time ago. You presuming they be embarrassed to be seen is putting onto them some feeling you don’t know they have. You’re probably just projecting your own embarrassment. But just look at them.If you need another reason consider that after the second world war men who were really messed up physically simply would never go outside. They didn’t want to be seen. If someone’s outside don’t assume they too embarrassed to be seen. Don’t feel bad about looking just look.

qaq大约 7 年前

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

senectus1大约 7 年前

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.)

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VLM大约 7 年前

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.

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Jare大约 7 年前

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.

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commenter1大约 7 年前

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.

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jasonmaydie大约 7 年前

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 oneetc etcIt'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.

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LifeLiverTransp大约 7 年前

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

Upvoter33大约 7 年前

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

thrwwy784567435大约 7 年前

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 <a href="https://news.ycombinator.com/item?id=16656127" rel="nofollow">https://news.ycombinator.com/item?id=16656127</a> 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:<a href="https://news.ycombinator.com/item?id=16655381" rel="nofollow">https://news.ycombinator.com/item?id=16655381</a><a href="https://news.ycombinator.com/item?id=16656900" rel="nofollow">https://news.ycombinator.com/item?id=16656900</a><a href="https://news.ycombinator.com/item?id=16656217" rel="nofollow">https://news.ycombinator.com/item?id=16656217</a><a href="https://news.ycombinator.com/item?id=16656005" rel="nofollow">https://news.ycombinator.com/item?id=16656005</a>Some are easy going, some have very strict rules and for very good reasons. So how can we generalise this to make it easier for people to communicate with us?This, from the article is perhaps key:> Focusing on the commonplace is a good idea if you're worried about saying the wrong thing.Small talk is a misunderstood and very powerful social tool.And also this from one of the comments, because if you don't know the kids condition you don't know how you might affect them:> Do not do anything without asking politely

Myrmornis大约 7 年前

What a well-written article.

TheAdamAndChe大约 7 年前

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.

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