to be upset with people when they ask me what is WRONG with my nephews eye

[addictedtolatte]

my nephew was born without an optic nerve and an eye condition which has left him with a tumour (non cancerous) and a catteract which makes his eye hazey looking. he is also blind in this eye. he is 7 now and has coped remarkebly with this disability. when am out in public with him i get asked by adults what is wrong with his eyes. how rudei constantly have to say "why dont you ask him yourself he is sight disadvantaged not deaf" i just dont want him growing up thinking there is something wrong with being partially sighted.

I think what people are failing to get though is that these people aren't stopping to ask questions about someone's disability - they are asking questions to someone else, about someone's disability. As if the disability has made the person being enquired about incapable of speach.

Imagine if you went out and people commented to your partner "oh she looks nice today/what has she done to her hair/has she been shopping?" and never acknowledged you? Would you think that was perfectly acceptable? And if not then why is it any more acceptable to ask questions about someone's disability to someone other than the disabled person?

I have no issue with answering questions re my disability, I do think that in a lot of instances it's perfectly normal to want to know how someone does things when they have to do them differently, (although I do confess that "does the dog help with the cooking" I found to be a bit ignorant).

However, there's a difference between wanting to know about disability, and wanting to know how the disability came about, iyswim. The first is natural, the second is just bloody nosy.

As for people being upset that their disability is not acknowledged, tbh I can't imagine that. I think the only time I have been annoyed that my disability was not acknowledged was at a job interview, when, having not mentioned that I was blind, I turned up with a guide dog, proceeded with the interview, and not once was the question of accessibility/how I would do the job brought up, thus making it fairly clear that they had no intention of giving me the job.

Maybe wannaBe they are asking because the boy is still young - in the same way that you might ask the adult if the child could come to tea?!!! There was a point with my son - and we encouraged it from a very early age - when he would happily chip in and tell anyone who asked that it was something he was born with.

He still responds in the same way, unless he doesn't like the look of the lads asking, in which case he'll say he got his wonky nose through rugby or fighting, and they quickly drop the smart questions.

I suppose the point this whole thread makes clear is that we are all so different, and have opposing opinions and reactions.

If you do find a dog that can cook - could you send it in my direction please?!!

haven't read the whole thread but i remember at uni i knew this girl, v pretty, nice etc generally created a v positive impression.

i'd been going to classes with her for about a month and one day was in a queue to get into a lecture with her when i noticed that her eye was milky across the lens, so i said 'what's happened to your eye?!'

she was furious with me, told me i was very rude etc and that she'd had some sort of surgery on it when she was a child and that it's just not on to ask these sorts of questions. she never, ever spoke to me again.

no matter how much i tried to explain that i had Only Just Noticed and thought that she had literally just scratched it there and then, she wouldn't listen and just blanked me.

i felt awful for a while and then i just thought she was a bit of a twat.

now, ask me about the woman i sat beside at work for six months before saying to her 'omg your HAND!' because the skin on her hand was all discoloured and i thought that she was getting meningitis or something.

"I think it is the asking what is 'wrong' that is offensive. I think that would mostly confuse ds. He doesn't have anything 'wrong' jjsut different."

I don't get this. And I am speaking as the mother of a child who has a disability. Are you saying that having the cataract/tumour is as desirable for a child as having the sight in both eyes? Because I can tell you that it is not desirable for my DD to struggle with finding words, struggle to climb the stairs, struggle to sit in a group, struggle to concentrate, struggle to wait her turn, struggle, struggle, struggle.

Now, don't get me wrong, the DD1 I have is amazing, funny, beautiful, both in personality and physically, but would I swap out the faulty bits of her brain to allow her to develop and have choices like other 4 year olds - you betcha.

If someone asked me 'what's wrong with your DD?', I would gladly tell them that she has a brain malformation. But they don't. They assume she is being a brat.

One of the guests at a party (2 years old) was very obviously disabled. I said (and signed) hello to her, and asked her mum her name. The next thing I said was "How long has x had her cochlear implant?" The mum willingly discussed it with me. I was fortunate, I knew what a CI was, so could ask sensitively. Someone else might have asked what was 'wrong' with her, but meaning the same thing.

If we as parents of children with disabilities want our children to be accepted and integrated in society, we have to be accepting of people's interest in them. Otherwise people will be so flipping scared of opening their mouths that they will just ignore them.

I agree with you lou.

I have never minded people asking what is wrong with me, as I have somethign wrong with me. Not that that is a loaded or negative thing, it's just a fact. The only other thing people normally say is "what happened to you" I do find that rather intrusive TBH.

And yes, if people think that they are not allowed to ask, or don't know what to say, they might avoid talking to the person altogether. For the "elephant in the room" reasons that SDTG talks about.

I have found that once people know what's going on, then everyone can relax and get on with whatever they're doing. Thinking things like work meetings now, with people you have never met before and will never meet again.

But again that is just my approach, everyone has different experiences and there is nothing wrong (as it were) with people taking whatever approach they choose. I suppose a lot of it hinges on personality/mood as well. I find when I am feeling less confident I really resent it, when I am feeling cheerful and positive I like to talk to random strangers about whatever really. PLus a particularly bad day can grind you down.

I just try to keep it in mind that the vast majority of people do not mean any harm with their questions.

By rastababi Wed 10-Mar-10 17:39:19
What people need to understand is that it's not one person asking one question about you. It's a person at the post office asking, another at the shop, another at the park, another at the school gates, another in town, another on the bus........ sad

To be told it's none of their business is acceptable IMO, because quite frankly, it's not their business.

good post and sums up how I feel

But the alternative is that we all go round ignoring eachother - just as sad, I'd say.

I think it is different with children though, we have to be more sensitive of the effect continual "what's wrong with him?" from all and sundry could have. I.E.: making him think that something is wrong with him, which he'll carry into his adult life.

STDG - Is there no happy medium between approaching strangers and saying 'what's wrong with you?' and no-one taking an interest in other people?

I have experienced hundreds of people who have been very kind and helpful when DS has been out and about with his leg stuck through with metal pins...help first (hold open door / tactfully stop their children standing in front of him at exhibitions, blocking his view / move chairs away from a table so that his wheelchair would go under etc etc), or just be chatting in a small talk friendly way at the park etc, and in that case, I have generally been the one to give a short explanation.

Don't get me wrong - many people are well intentioned, and manage to be kind, helpful and / or friendly around differnce / disability. And makes the 'What's wrong with him, then?' even more inexplicable as a normal social way to go on.

I know people often find it hard to broach disability, and it is precisely because they are so keen NOT to upset anyone that they may feel awkward - but that is usually, IME, clear. And they are not the same people who say 'what's wrong with hi, then' as their first and only communication.

I agree there should be a happy medium, but there are people on this thread saying (or appearing to say - perhaps I have misread them) that no questions are acceptable and, as I said earlier, it is really difficult to know what approach each person will find acceptable or unacceptable - and this could drive people to feeling that 'keeping oneself to oneself' is the safest option, which would be a shame, I think.

Well, it is possible to offer practical help or simply be friendly without asking questions which are, really, quite personal, when you are a stranger. I thinkmostly people on this thread are railing against the kind of nosy questioning (esp with the word 'wrong') that is described in the OP.

Perhaps it is different depending on the disability. I know that I feel hideous when DD1 is kicking off, because I know that she is physically 'normal' enough that unless people hear her speaking (sensibly) or see her walking, they wouldn't know (although I do think that she has a 'look' about her which an astute person would have a ? running through their minds).

Which means that I am almost begging for an opportunity to say "DD1 looks like a 4 year old, but her brain is all a bit squiffy (medical terminology used when explaining her disorder) on the inside, so she behaves a little like a 2 year old but not like an NT 2 year old, and she really is a lovely girl, and she isn't the spoiled little tantruming brat you are assuming she is, and I do have good discipline at home, but it isn't very easy to discipline DD1 because what is reinforcing changes hour by hour or minute by minute, and we are getting help, and she'll go to SN school soon and and and...."

Instead, I cringe as I feel eyes boring into the back of my head and sense the 'public information strip' running through people's minds that say "A child of that age shouldn't behave like that." "Where's her discipline", etc.

By StayingDavidTennantsGirl Thu 11-Mar-10 12:28:27
But the alternative is that we all go round ignoring eachother - just as sad, I'd say.

would you go up to a fat person and ask them why they were fat?
of course not.
so why is it iook to question people like this?

it is one think to ask in conversation......as in "what is it that your dd has" for example.
another for a random person/child to ask.