15 ms·

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

415 points by helloworld 9y ago

VLM 9y ago
The whole discussion in the article and on HN fits the general pattern of communication malfunctions when X is the only X in a sea of Y, which at least seems to make it universally applicable and everyone's got some advice from once being the only X in a sea of Y. Or, are we/I missing something specific where being the only X is unique in the isolated case of a disabled kid? Something to do specifically with maternal or paternal instincts maybe? My point is if we can't define the problem accurately as a general issue or a very focused issue, then all the discussion will be at the wrong scale, if not outright wrong.
- tehwebguy 9y ago
  I think it’s just about disabled kids and their parents not wanting to be treated like they have the plague.
jstanley 9y ago
> 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.
- lokopodium 9y ago
  Also "just ask" is quite an oversimplification. I'd have no idea how to even talk about it.
  - GordonS 9y ago
    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.
- Rainymood 9y ago
  I think you're somewhat pulling that single line out of context. Here's the paragraph it's in >Kids with disabilities want to socialize; the need to affiliate is deeply human and present in all of us. Children like Esprit may not be able to participate exactly as typical kids do, but who cares? My wife would not have been indignant if a playdate had included more babies, so the typical kids could do typical kid stuff while Esprit watched. Just ask a disabled child's parents whether the planned activity will work for their son or daughter. If an adjustment is needed we can figure it out together. To be honest I liked the article and it makes a good case and has given me a new perspective. Especially this last one is quite morbid: >For parents of a severely disabled child, the big picture is dominated by a future cataclysm. For my wife and me, it's that, although Esprit has lived nearly 15 years, we will likely survive her. For other parents, it's that their child will likely survive them.
  - theparanoid 9y ago
    I'm doing an internship in a long-term-care facility (one resident has Huntington's) and there's no easy way to accommodate the profoundly disabled.
    - throwaway19834 9y ago
      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.
- helloworld 9y ago
  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.
  - Angostura 9y ago
    The only adjustmnent being asked for there was an adjustment of expectations.
- deleted 9y ago
  [deleted]
- igni 9y ago
  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.
- gowld 9y ago
  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.
helloworld 9y ago
I found this part helpful, but also poignant: Focusing on the commonplace is a good idea if you're worried about saying the wrong thing. Remarking on the daily practicalities of Esprit's life won't make us blink, but we'd rather you didn't bring up the long haul, even with compliments like, "God only chooses special parents to have someone like Esprit," or commiserations like, "Sometimes, it all just seems so unfair." I get it. Esprit can bring to mind big-picture questions about blind fortune or the mystery of God's plan — something seemingly terrible has been visited upon an innocent child. But those are the thoughts you shouldn't share with us. For parents of a severely disabled child, the big picture is dominated by a future cataclysm. For my wife and me, it's that, although Esprit has lived nearly 15 years, we will likely survive her. For other parents, it's that their child will likely survive them. We would rather consider the big picture at times of our own choosing.
- coffeemug 9y ago
  > Focusing on the commonplace is a good idea if you're worried about saying the wrong thing. This is good advice for most situations where people might get nervous and don't automatically know what to do (e.g. meeting a stranger).
  - matthewwiese 9y ago
    Definitely. The oft derided phrase "How's the weather?" certainly came into the popular consciousness for a reason. The commonplace can be a source of great camaraderie; not the banality we usually dismiss it as. This is one of the more humbling and meaningful submissions I've had the good fortune to read on HN.
    - bonesss 9y ago
      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.
throwaway234091 9y ago
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)
- hnaccy 9y ago
  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.
  - coldtea 9y ago
    Help whenever possible?
  - goldenkey 9y ago
    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.
TheAdamAndChe 9y ago
This an oddly preachy piece trying to tell me exactly how I should behave around _all_ disabled people, which is presumptuous. Not all disabled people are mentally retarded, and many of those who aren't don't like getting stared at by everyone.
- icebraining 9y ago
  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.
coffeemug 9y ago
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.
- goldenkey 9y ago
  The trick is not to get all panicky and think "what if they see me looking at them deliberately?!" Would you really need to tiptoe around a turtle? You don't have to treat a retarded [1] person as if they aren't impaired. Just don't be condescending. Treat them nicely, knowing that they aren't going to sleuth every cue you unconsciously emit, because well..retarded people don't make the best true detectives. Healthy folk don't either. Ever smoke cannabis and get the feeling everyone is looking at you and judging you..? But then you realize that feeling is totally irrational -- that most people are oblivious to just about everything -- people are oblivious in public. Just be a nice person and smile or wave back...everyone understands good will, love, and happiness. [1] https://en.wikipedia.org/wiki/Arc_of_the_United_States https://en.wikipedia.org/wiki/Arc_of_the_United_States
  - stordoff 9y ago
    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.
ggg9990 9y ago
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.
- helloworld 9y ago
  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.
- Myrmornis 9y ago
  No, it’s not arbitrary, it’s all quite consistent and in a similar direction.
  - ggg9990 9y ago
    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.
- deleted 9y ago
  [deleted]
- muddyrivers 9y ago
  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.
senectus1 9y ago
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.)
- omgbananas 9y ago
  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.
  - GordonS 9y ago
    > 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.
- tempestn 9y ago
  I've never seen "sighted" used that way. I would have assumed sighted is the opposite of blind. Is it commonly used to mean almost completely blind?
  - verylittlemeat 9y ago
    >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."
meganibla 9y ago
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.
Myrmornis 9y ago
What a well-written article.
larrykwg 9y ago
Just remember that T18 can be detected prenatal, those parents decided to have her.
- psergeant 9y ago
  Also remember: virtually none of us have been in that situation, or know the context, so any kind of judgement about it is ridiculous.
- gknoy 9y ago
  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.
  - Scaevolus 9y ago
    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 http://www.nejm.org/doi/full/10.1056/NEJMoa1311037
  - jonathankoren 9y ago
    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/maternalfetalmedicine/firsttrimesterscreening/ https://christianacare.org/services/baby/maternalfetalmedici... [1] http://www.slate.com/articles/health_and_science/medical_examiner/2013/07/texas_abortion_ban_after_20_weeks_prenatal_testing_reveals_birth_defects.html http://www.slate.com/articles/health_and_science/medical_exa...
Jare 9y ago
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.
- emsy 9y ago
  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.
  - GordonS 9y ago
    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.
- tallanvor 9y ago
  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.
skc 9y ago
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.
- lovemenot 9y ago
  >> 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.
- magic_beans 9y ago
  “Perfectly fine” —- well, you’re only two weeks in! Enjoy the wild ride :)
- sidlls 9y ago
  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.
- gowld 9y ago
  > 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.
AnatMl2 9y ago
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.
qaq 9y ago
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.
deleted 9y ago
[deleted]
joaorico 9y ago
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/047059196X https://www.amazon.com/Why-Dont-Students-Like-School/dp/0470...
jasonmaydie 9y ago
As much as I agree with him, you can't really change human social wiring. -you're more likely to talk to an attractive person, than an unattractive one -you're more likely to engage in a conversation with an eloquent person that an stutterer. -you're less likely to make eye contact with a disabled person compared to an undisabled one etc etc It's human nature and there's nothing wrong with that, I think the better approach is recognizing that and ignoring it rather than flagging it as an issue.
- gowld 9y ago
  Why not recognize it and flag it as an issue?
thrwwy784567435 9y ago
As a parent of a special-needs child, its great to read such a well written article and see the discussion here. Like this commenter https://news.ycombinator.com/item?id=16656127 https://news.ycombinator.com/item?id=16656127 and I suppose like most parents, I also was worried about disability in the run up to the birth of my child. They were fine at birth, perfectly normal until 6 months. Then things went downhill fast. I wont go into the details but you sortof mourn the loss of the future you thought they were going to have. Then in time you adapt somewhat, and find the positives where you can. No-one ever puts stats to this, but if you are wondering, a family having a child have (roughly, according to my research) about a 1-in-200 chance of having a child with some-or-other rare disability or disorder that will completely change all of their lives and consume most of their energy going forwards. As such they end up joining a small but sizeable community of special needs parents. When I was younger I didn't really know what to do when faced with a family with a disabled child (say, at a gathering if they were friends of friends), so often I'd end up not talking to them. Now I see how isolating it can be and so I aim to be very tolerant of how people approach and talk to us, because saying something a bit wrong is surely better than ignoring us. But I'm still in the early years of this life, perhaps I will feel differently about it in 10 or 20 years time. You can see from this thread that there are lots of different views from parents of disabled kids about how they would like to be interacted with: https://news.ycombinator.com/item?id=16655381 https://news.ycombinator.com/item?id=16655381 https://news.ycombinator.com/item?id=16656900 https://news.ycombinator.com/item?id=16656900 https://news.ycombinator.com/item?id=16656217 https://news.ycombinator.com/item?id=16656217 https://news.ycombinator.com/item?id=16656005 https://news.ycombinator.com/item?id=16656005 Some are easy going, some have very strict rules and for very good reasons. So how can we generalise this to make it easier for people to communicate with us? This, from the article is perhaps key: > Focusing on the commonplace is a good idea if you're worried about saying the wrong thing. Small talk is a misunderstood and very powerful social tool. And also this from one of the comments, because if you don't know the kids condition you don't know how you might affect them: > Do not do anything without asking politely
commenter1 9y ago
The problem is, I don't smile to people I don't know. I've sometimes smiled to babies, but then afterwards I think "Why did I do that?". If I started smiling and waving to disabled people, that would be me treating them differently than I do other people. I think that's the last thing disabled people want.
- gowld 9y ago
  > "Why did I do that?" It's your innate social humanity peeking out. Don't smother it.
LifeLiverTransp 9y ago
Everyone of us is one long airplane travel with a trombus away from becoming the one stared at and socially isolated.
Upvoter33 9y ago
All I do when I see someone who seems different: smile, maybe say hello. Try it, it's easy!

415 points by helloworld 9y ago

VLM 9y ago

The whole discussion in the article and on HN fits the general pattern of communication malfunctions when X is the only X in a sea of Y, which at least seems to make it universally applicable and everyone's got some advice from once being the only X in a sea of Y. Or, are we/I missing something specific where being the only X is unique in the isolated case of a disabled kid? Something to do specifically with maternal or paternal instincts maybe? My point is if we can't define the problem accurately as a general issue or a very focused issue, then all the discussion will be at the wrong scale, if not outright wrong.

tehwebguy 9y ago
I think it’s just about disabled kids and their parents not wanting to be treated like they have the plague.

jstanley 9y ago

> 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.

lokopodium 9y ago
Also "just ask" is quite an oversimplification. I'd have no idea how to even talk about it.
- GordonS 9y ago
  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.
Rainymood 9y ago
I think you're somewhat pulling that single line out of context. Here's the paragraph it's in >Kids with disabilities want to socialize; the need to affiliate is deeply human and present in all of us. Children like Esprit may not be able to participate exactly as typical kids do, but who cares? My wife would not have been indignant if a playdate had included more babies, so the typical kids could do typical kid stuff while Esprit watched. Just ask a disabled child's parents whether the planned activity will work for their son or daughter. If an adjustment is needed we can figure it out together. To be honest I liked the article and it makes a good case and has given me a new perspective. Especially this last one is quite morbid: >For parents of a severely disabled child, the big picture is dominated by a future cataclysm. For my wife and me, it's that, although Esprit has lived nearly 15 years, we will likely survive her. For other parents, it's that their child will likely survive them.
- theparanoid 9y ago
  I'm doing an internship in a long-term-care facility (one resident has Huntington's) and there's no easy way to accommodate the profoundly disabled.
  - throwaway19834 9y ago
    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.
helloworld 9y ago
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.
- Angostura 9y ago
  The only adjustmnent being asked for there was an adjustment of expectations.
deleted 9y ago
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igni 9y ago
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.
gowld 9y ago
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.

helloworld 9y ago

I found this part helpful, but also poignant: Focusing on the commonplace is a good idea if you're worried about saying the wrong thing. Remarking on the daily practicalities of Esprit's life won't make us blink, but we'd rather you didn't bring up the long haul, even with compliments like, "God only chooses special parents to have someone like Esprit," or commiserations like, "Sometimes, it all just seems so unfair." I get it. Esprit can bring to mind big-picture questions about blind fortune or the mystery of God's plan — something seemingly terrible has been visited upon an innocent child. But those are the thoughts you shouldn't share with us. For parents of a severely disabled child, the big picture is dominated by a future cataclysm. For my wife and me, it's that, although Esprit has lived nearly 15 years, we will likely survive her. For other parents, it's that their child will likely survive them. We would rather consider the big picture at times of our own choosing.

coffeemug 9y ago
> Focusing on the commonplace is a good idea if you're worried about saying the wrong thing. This is good advice for most situations where people might get nervous and don't automatically know what to do (e.g. meeting a stranger).
- matthewwiese 9y ago
  Definitely. The oft derided phrase "How's the weather?" certainly came into the popular consciousness for a reason. The commonplace can be a source of great camaraderie; not the banality we usually dismiss it as. This is one of the more humbling and meaningful submissions I've had the good fortune to read on HN.
  - bonesss 9y ago
    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.

throwaway234091 9y ago

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)

hnaccy 9y ago
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.
- coldtea 9y ago
  Help whenever possible?
- goldenkey 9y ago
  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.

TheAdamAndChe 9y ago

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

icebraining 9y ago
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.

coffeemug 9y ago

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.

goldenkey 9y ago
The trick is not to get all panicky and think "what if they see me looking at them deliberately?!" Would you really need to tiptoe around a turtle? You don't have to treat a retarded [1] person as if they aren't impaired. Just don't be condescending. Treat them nicely, knowing that they aren't going to sleuth every cue you unconsciously emit, because well..retarded people don't make the best true detectives. Healthy folk don't either. Ever smoke cannabis and get the feeling everyone is looking at you and judging you..? But then you realize that feeling is totally irrational -- that most people are oblivious to just about everything -- people are oblivious in public. Just be a nice person and smile or wave back...everyone understands good will, love, and happiness. [1] https://en.wikipedia.org/wiki/Arc_of_the_United_States https://en.wikipedia.org/wiki/Arc_of_the_United_States
- stordoff 9y ago
  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.

ggg9990 9y ago

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.

helloworld 9y ago
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.
Myrmornis 9y ago
No, it’s not arbitrary, it’s all quite consistent and in a similar direction.
- ggg9990 9y ago
  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.
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muddyrivers 9y ago
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.

senectus1 9y ago

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.)

omgbananas 9y ago
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.
- GordonS 9y ago
  > 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.
tempestn 9y ago
I've never seen "sighted" used that way. I would have assumed sighted is the opposite of blind. Is it commonly used to mean almost completely blind?
- verylittlemeat 9y ago
  >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."

meganibla 9y ago

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.

Myrmornis 9y ago

What a well-written article.

larrykwg 9y ago

Just remember that T18 can be detected prenatal, those parents decided to have her.

psergeant 9y ago
Also remember: virtually none of us have been in that situation, or know the context, so any kind of judgement about it is ridiculous.
gknoy 9y ago
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.
- Scaevolus 9y ago
  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 http://www.nejm.org/doi/full/10.1056/NEJMoa1311037
- jonathankoren 9y ago
  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/maternalfetalmedicine/firsttrimesterscreening/ https://christianacare.org/services/baby/maternalfetalmedici... [1] http://www.slate.com/articles/health_and_science/medical_examiner/2013/07/texas_abortion_ban_after_20_weeks_prenatal_testing_reveals_birth_defects.html http://www.slate.com/articles/health_and_science/medical_exa...

Jare 9y ago

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.

emsy 9y ago
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.
- GordonS 9y ago
  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.
tallanvor 9y ago
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.

skc 9y ago

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.

lovemenot 9y ago
>> 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.
magic_beans 9y ago
“Perfectly fine” —- well, you’re only two weeks in! Enjoy the wild ride :)
sidlls 9y ago
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.
gowld 9y ago
> 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.

AnatMl2 9y ago

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.

qaq 9y ago

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.

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joaorico 9y ago

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/047059196X https://www.amazon.com/Why-Dont-Students-Like-School/dp/0470...

jasonmaydie 9y ago

As much as I agree with him, you can't really change human social wiring. -you're more likely to talk to an attractive person, than an unattractive one -you're more likely to engage in a conversation with an eloquent person that an stutterer. -you're less likely to make eye contact with a disabled person compared to an undisabled one etc etc It's human nature and there's nothing wrong with that, I think the better approach is recognizing that and ignoring it rather than flagging it as an issue.

gowld 9y ago
Why not recognize it and flag it as an issue?

thrwwy784567435 9y ago

As a parent of a special-needs child, its great to read such a well written article and see the discussion here. Like this commenter https://news.ycombinator.com/item?id=16656127 https://news.ycombinator.com/item?id=16656127 and I suppose like most parents, I also was worried about disability in the run up to the birth of my child. They were fine at birth, perfectly normal until 6 months. Then things went downhill fast. I wont go into the details but you sortof mourn the loss of the future you thought they were going to have. Then in time you adapt somewhat, and find the positives where you can. No-one ever puts stats to this, but if you are wondering, a family having a child have (roughly, according to my research) about a 1-in-200 chance of having a child with some-or-other rare disability or disorder that will completely change all of their lives and consume most of their energy going forwards. As such they end up joining a small but sizeable community of special needs parents. When I was younger I didn't really know what to do when faced with a family with a disabled child (say, at a gathering if they were friends of friends), so often I'd end up not talking to them. Now I see how isolating it can be and so I aim to be very tolerant of how people approach and talk to us, because saying something a bit wrong is surely better than ignoring us. But I'm still in the early years of this life, perhaps I will feel differently about it in 10 or 20 years time. You can see from this thread that there are lots of different views from parents of disabled kids about how they would like to be interacted with: https://news.ycombinator.com/item?id=16655381 https://news.ycombinator.com/item?id=16655381 https://news.ycombinator.com/item?id=16656900 https://news.ycombinator.com/item?id=16656900 https://news.ycombinator.com/item?id=16656217 https://news.ycombinator.com/item?id=16656217 https://news.ycombinator.com/item?id=16656005 https://news.ycombinator.com/item?id=16656005 Some are easy going, some have very strict rules and for very good reasons. So how can we generalise this to make it easier for people to communicate with us? This, from the article is perhaps key: > Focusing on the commonplace is a good idea if you're worried about saying the wrong thing. Small talk is a misunderstood and very powerful social tool. And also this from one of the comments, because if you don't know the kids condition you don't know how you might affect them: > Do not do anything without asking politely

commenter1 9y ago

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

gowld 9y ago
> "Why did I do that?" It's your innate social humanity peeking out. Don't smother it.

LifeLiverTransp 9y ago

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

Upvoter33 9y ago

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