Nerida
By NERIDA LUCAS
There are many debates taking place at the moment between people with a disability and those without. These debates circle about with people to-and-fro’ing with their opinions and judgements. It’s great that the lines of communication are open but is any progress actually being made? Does stating our reactive emotions shake foundations? I’m not sure it does.
I am an honest, realistic, practical person. So here it goes…
Many people ask how to behave around a person with a disability, be it physical or intellectual. Here are a few tips.
My son is 10 years old and has Down Syndrome, Autism and ADHD (Hyperactivity). He is more normal than not. His disability is like a sheer veil around him that slightly alters his view of the world. It is not his whole and it is not who he is. He is a 10-year-old boy. He is not the lesser. The normal social protocols apply to us. Us being, him as a person with a disability and me as a woman who has a child with a disability.
Do not stare, it is rude. Do not allow your child to stare. If your child asks you a question or comments on the disability, answer it. Do not get embarrassed and run away, that is disrespectful to us. A simple ‘I have no idea’ or ‘it’s none of our business’ would suffice. I would prefer you tried to explain it rather than just ignore us.
If you feel their staring, question, or comment was embarrassing or rude then look me or my son in the eye and apologise. Treat us with human decency and common respect. The worst thing you can do is to be rude or allow your child to be, regardless of intent, and then not address it, it is degrading and disrespectful.
Never talk down to or over my son. Greet him as you would any other 10-year-old boy, again the normal social etiquette applies. This is a reluctant generalisation, but greet a person with a disability according to their age. Never assume you know a person’s mental capacity, it is impossible to judge. Their carer will help interpret if need be. If in doubt treat the person as you would want to be treated, not you ‘in their position’, the you that you are now.
Respect his physical space. It would be strange to pat a standard 10-year-old boy on the head or stroke his face. The same applies to my son.
If he misbehaves, react as you would any other mother and child. You wouldn’t tell someone you just met that their child is a pain in the backside. Do not do that to me. If he is misbehaving he may just be having a bad day like any other person. Do not assume he is always like that. Please do not react sympathetically, like using a smile-with-head-tilt.
“It feels as bad as you would imagine.”
You wouldn’t meet a new person and greet them with “You look shit, your life is shit, and your child is weird”. This is what you are saying when you tell me “I don’t know how you do it” or “He is hard to handle” or when you see a person with a disability and assume everything is difficult and horrible for them and they are hero’s ‘for living this way’. That is not validating. Only when you know me in my entirety would you have the right to comment on my life.
How do you think it makes me feel when I am desperately in love with my son, as any mother is with their child, and you only notice the negative, just think about how hard the tough times are? It feels as bad as you would imagine.
Yes, we feel a huge amount of stress, it is often unbearable. Most of the stress is from society and the ramifications of the reactions and inactions we receive everyday. The staring, rude comments, ignoring, patronising, degrading, abandonment behaviours we are subjected to from the people around us. We are not in a united subsection of society, there is no unification of people with a disability and their carer’s. I once joined an online group for mother’s of children with Down Syndrome.
Their welcome message informed me I was not in fact allowed to use the term ‘Down Syndrome’ and could only address my son’s disability with its genetic term ‘Trisomy 21′. I informed them I would do no such thing, to put it politely. Needless to say that was the end of my association with them.
The truth is, I am the same as you. My child is equal to yours, he is their peer. We are the same as you.
My circumstances do not define me.
I am your equal. I am not different. My life is not different. His life is not different. Only our logistics are.
My son is a loving, happy and accepting soul who lives without greed, without hate, without stereotypes. He doesn’t care how much money you do or do not have, what car you drive, the colour of your skin, your sexual orientation, or whether you are fat or thin. He just sees whether you are a good person or not. That is what makes him special.
Just because his physical looks, and his actions and reactions are not what you are used to or what you would expect, does not make him or I different. It just means you need to expand your definition of normal.
How to behave around a person with a disability? As you would a person without a disability.
Degrading question isn’t it.
Nerida Lucas is the director of the Axis Program and the author of Carer’s Truth. She has three children, Calvin 11 years, Lewis 7 years and Bethany 10 months. She is dedicated to the aid of carers and enlightening the world of what it is like to live with, care for and love a person with disability and is passionate about lifting the veil of secrecy and misunderstanding that surrounds them by changing society’s perceptions towards people with a disability and their families.
Comments
196 Comments so far
A point regarding the “do not stare, do not allow your child to stare” thing. I used to train assistance dogs for people with disabilities, and that involved spending a lot of my day in a wheelchair. It gave me a wheelchair eye’s view into how people treat you when they think you are disabled, and let me tell you that it is not good.
But I always felt visible, because the dog drew people’s eyes. Imagine my surprise when, speaking to actual clients who had recieved dogs, I learned that this is not the norm.
Many clients told me that before they got their dog, they were invisible. “People have been so programmed not to stare that they can’t even look at you. It’s very lonely,” said one girl who never really made friends until she got her dog. Having her dog opened the lines of communication – people started approaching, asking her questions, and she made friends.
Many of the clients I spoke to hated the “do not stare” thing. “I don’t mind if a child looks at my wheelchair and asks questions. I invite the child over to talk to me about it, and if it’s okay with the mother, I give the kid a little ride,” one client told me. “What I hate is people actively looking away from me, as if I shouldn’t be seen.”
You know how people make idle conversation with each other in a line at the grocery store or at the doctor’s office? Yeah, people don’t do that with you if you’re in a wheelchair. They pretend you don’t exist and feel that they are being sensitive by not drawing attention to your difference.
Because invisibilty feels SO much better.
People are SO programmed not to stare that even when I was in a wheelchair with a dog, people would still speak to a standing coworker rather than me. If one of us was testing the other’s dog, we would follow the coworker and their dog around by foot, marking the dog’s ability to complete basic tasks. Cashiers would then address the person on foot rather than talk to the person in the wheelchair, because they didn’t even feel comfortable making eye contact.
Now, there is a line between looking and staring. But I think that when we tell people “don’t stare” they hear ‘don’t look.” If my child saw a person in a wheelchair or with Down Syndrome, I wouldn’t say “don’t stare.” Instead I would say “do you want to say hi?”
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Hi Nerida, I’d like to respond to part of your article, I hope you will accept my comments in good faith. If I see a mother struggling with a difficult child in the supermarket, I will smile at her, perhaps with my head tilted to the side, or a slight shrug of my shoulders. My intention is to offer her a little solidarity, I am not intending to be judgemental of her or her child in any way. Any Mother knows we have good and bad days, difficult stages, and down right hard times with our children and the last thing any Mother needs is judgement from a stranger. Yet your article seems to indicate that what I am actually saying to this mother with my sympathetic smile is that “You look shit, your life is shit, and your child is weird”. How sad has our society become that a simple smile could be interpreted is such a way and cause so much anguish
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I always smile at a mum with a child who is having a ‘Moment’ I would hope (as I usually have two of my own beside me) that the other mother sees it as a smile of solidarity not a put down.
My children have stared and asked questions sometimes not so quietly about all sorts of people when were shopping. Sometimes I handle these questions well and other times I am caught off guard and stammer and mess my reply up. I am human as you and your son are and not every outing goes to plan. I hope the majority of people you and your son meet are respectfull and nice to you. I certainly try to be every time Im out somewhere, even if my children do send me scurrying for the exit every now and then.
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Although I do not have a child with a disability, I do have an older sister who, a few years ago, was involved in a tragic road accident when a drugged truck driver fell asleep at the wheel killing my mum instantly and leaving my sister with life threatening injuries and cuts to her whole body. 3 years on and some plastic surgery to cover the severity of her facial scarring, she would be mortified if some stranger were to ask her how she got the scars as this would be yet another reminder to her of that horrible day that claimed the life of our mother.
Yes, children will stare, its only natural. They will stare at people who are different to them. But teach them not to.its your job as a parent to explain it to your kids, I don’t think it’s the job of a disabled or disfigured child’s mum or dad to have to explain it to the world. How draining for them! I have taught my kids not to stare as it can upset people, but I also let them ask me questions if they have any.
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People with a disability are incredibly vulnerable people in our society with physical, emotional and sexual abuse common. Google it sometime, you will be MORTIFIED.
As a mum of a disabled child it would be reckless and irresponsible of me to allow him to interact with everyone who looks his way.
Would you let your child converse with every adult that smiles at them? Well neither do I.
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I think people need to re-read it. She never said don’t stare during a tantrum so all those arguing about kids looking at loud noises etc are irrelevant.
Unless your child is well past the average age of having tantrums you can’t sympathise. A disabled child’s meltdown IS NOT a tantrum.
I took it as her saying don’t stare when walking past etc. Open your eyes people.
When was the last time you stood up or spoke out for something you believe in?
All those ripping into her seem to me to perhaps be the very people she is talking about.
People group disabled people together and refer to them as an entity, as soon as its reversed & she groups non-disabled people together and talks to them as a whole you can’t handle it.
Big long look in the mirror guys.
Well done girl for making them look!
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Loved the article. Didn’t think it was rude at all. But there were a few points that I wanted to comment on.
I think in some instances, the way you may react or interpret comments and looks from strangers, reflect how you are feeling or what you ASSUME people to be thinking. Yes there are lots of rude people out there, I understand that you’ve met a lot more that I have, but in some instances, people aren’t meaning what you interpret.
You mention “You wouldn’t tell someone you just met that their child is a pain in the backside.” I can assure you I have heard many instances of people saying similar comments to all sorts of kids. These people are just rude. They aren’t stating this solely because your son has a disability – they are just rude.
You say “You look shit, your life is shit, and your child is weird”. This is what you are saying when you tell me “I don’t know how you do it” or “He is hard to handle” – I don’t believe this is correct. This is how you interpret, but I have had these comments constantly over my time as a mum to 4. I used to let them bother me until I realised what people really meant was “I feel so inadequate in comparison to you. I simply don’t know how you do it, and I’m stating this out loud simply cause I’m so awed by what you do that it slipped out my mouth in a way that you may have taken to be criticizing your life. Although I don’t really wish to swap lives with you, I do fully consider the load you must be carrying and I fear that I would not be able to handle it.” I do think these comments are more a reflection of the persons feeling of inadequacies than them looking down on you or thinking your life is “shit”.
You also say “Please do not react sympathetically, like using a smile-with-head-tilt.” Well I must be offending everyone! Any time I see ANY parent struggling with a temper tantrum, rowdy or tired kid, I usually try and give a sympethetic smile, as I always assumed it was rude not to! I’ve been there, I know that kids are a handful and I’m smiling and nodding my head to acknowledge that.
I suppose I wanted to offer another view on these points. I know I don’t fully grasp the magnitudue of the rudeness you encounter, I would hope that sometimes you may look at it from a different angle – that the rudeness you are interpreting isn’t actually rudeness but genuine awe or a stranger trying to reach out. And other instances, the rudeness doesn’t occur just because your son has a disability, but because the rude person has the problem with every child the encounter.
I have 4 children. None of them has a disability
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Hi, i just wanted some advice from some of the parents with children with disabilities. We have some close friends who have 2 children with autism and severe developmental delays. They will do things like eat dirt and hit themsleves in the head when they are over at our place for a play.
My youngest (just turned 5) has asked why they do those things, why they still wear nappies etc. I have told her that their brains work a little bit differently to hers and it’s just like someone people are good at sport and some at singing everyone is different – have i done the wrong thing ? Is that considered offensive to say their brains work a little differently ? She seemed to accept that and has never commented again. But now i feel maybe i should focus on every being the same – but how do i do that when they do behave so differently from her. I hope i havent offended anyone, just hoping for some guidance.
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Hiya Anonymous!
I can only speak for our family and what I think our son would be ok with. When kids ask me questions about him I try to be honest but finish with a positive, for example “why is he in that chair?” I say something like “he can’t walk too well but boy can he roll!”
I like to point out that yes there is a problem but also point out the great stuff he can do. If they ask why he can’t talk, I make it as simple as possibe (and age appropriate) and try to include them. eg “Some activities are just harder for him to do. He listens to everything you say but it’s hard for him to talk back. He loves to hear your stories though.” He uses a PODD (a book of symbols) so I might talk about his different way of communicating. If I was feeling super ‘teachery’ that day, I might say “hmmm, how many different ways can you think of to say “hello” or “I like you” without talking?” (gesture, facial expression, PODD…)
If they ask about specialist stuff like his feeding tube, I try to make it exciting because that can be a bit confronting. “Oh, that’s really cool! Check this out (and I’ll show then how it works). He has food that goes straight to his tummy. We had special milk that was chocolate flavoured (which we did). Imagine having chocolate flavoured milk inserted directly to your stomach!!! They usually think that is the coolest thing ever. LOL.
If they ask for a general overview I usually just say what you said and make it super simple, without the science (unless they are older) and try to avoid words like “went wrong. “Well, he was made like this and some tasks like talking and walking are just a little bit trickier for him. He has trouble doing some activities but that just means we need to just give him some extra help. I think that’s pretty cool because (like you said) that makes us all different. It’d be a pretty boring old world if we were all the same…how would you know who you were talking to if we all looked the same (my pathetic attempt at a joke)? Do you know anyone else who needs a little extra help (relate it back to their world)…Do you know anyone else who has differences? (can include physical apperance, intellect- smart kids at school, people in family/ community with disability).
Then I usually talk about all the great things he can do or is interested in that they might also be interested in eg He loves balls, watching football and and going swimming. Better still, you could ask the child what they think the good things/ interests of the person with the disability are (if they know them).
Oh, the eating dirt thing/ banging head thing. A sensory processing disorder? Ask your friend if she has a way of explaining to kids what is happening (if she’s open to it).
I can’t say because I don’t know those kids. Check out sensoryprocessingmadesimple.com for a simple explanation, toys that might be useful to have and an idea of how to explain it.
Anyway, no, we are not all the same. That’s the beauty of the world. Acknowledge difference but acknowledge it in a positive way (like you’ve done) and point out that while there may be some limitations, the person with the disability has lots of other interests too which might be very similar to your own childs.
Cheers!
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I think that’s a great way toput it, yes I have disabled child. I’ve heard a few people use this term with siblings to help them understand their brother/sister. If that works for you and your kids then go for it. Not everyone in disability groups agree on terminology anyway!!
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Well said. The other thing about ” I don”t know how you do it” is…what choice do you have? You deal with the cards you are dealt and just lead your life, just like we all do.
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Awesome article Nerida. Thanks. Salutations to such a brilliant, passionate and quite eloquent mum!
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“I don’t know how you do it” says to me “your kid is rubbish, you must have some super human strength to put up with that. Thank God it’s not me!” It’s not hard to love your child. My son is intellectually impaired, physically impaired, non-verbal and has severe epilepsy. I think he is brilliant. I had one friend who would always get upset and say “i don’t know how you keep going.” What a stupid thing to say to a mother! My son isn’t second rate!!!! There isn’t enough space to write all the cool stuff, ‘normal’ suff and naughty stuff he can do. All the disability stuff is secondary.
I was a teacher so love it when kids (and adults!) come up to us and ask about my son and inquire about things like his feeding tube or his PODD. It’s wonderful for them to see something different and my son loves the interaction. How are we going to be a more inclusive and open society if we don’t encourage discussion and take these opportunities for social interaction? Even my generation kept kids with disabilities segregated. How is the next generation supposed to feel open and comfortable with EVERYBODY if their questions go unanswered and they are made to feel awkward for looking at their fellow human beings?
The people I am friends with are genuinly interested in my son and his adventures. Instead of saying “I don’t know how you do it” they ask “how are you going?” “can we help with…” “What’s happening with….”
Because I’ve reached a happy place in our journey, if people stare, I say ‘hi.’ Often they don’t realise they are staring. Often we make a new friend for 5 minutes or an afternoon.
The one important thing I have learnt on this adventure…My son understands EVERYTHING!!!! He just finds it difficult to communicate back what he knows. If you can remember that, you’ll find you won’t talk down, you’ll be age appropriate, you’ll include everyone in conversations and life will go on as per normal. Oh, and you’ll find (and this is so, so obvious to parents and friends of people with disabilities) that the disability is such a miniscule part of who the person is.
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I hear “I don’t know how you do it” ALL the time. I have 2 children. Neither of them have a disability.
I also have two full time professional businesses that I operate around my children. They spend a lot of time at work with me. But I can drop everything at my choosing to goto a school assembly or swimming lessons or soccer training or whatever. I consider myself very very lucky.
I could choose to hear it as a judgement. What I choose to hear when people say “I don’t know how you do it” is “I don’t understand your life”. That said, I am never at pains to enlighten them.
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I’m beginning to think that maybe the mysterious “tone” of this article that everyone keeps banging on about might just be the best thing about it.
Certainly got eveyone’s attention. Anyway. Bravo again Nerida. Bravo.
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‘His disability is like a sheer veil around him that slightly alters his view of the world. It is not his whole and it is not who he is.’
My favourite line in the whole article.
A disability does not define you.
‘How to behave around a person with a disability? As you would a person without a disability.’ My second favourite line.
Yep, treat people EQUALLY – treat them as you would want to be treated.
As for the discussion on tone, the treatment of people with a disability is a highly emotional one. For such a passionate article, I’m betting Nerida gets negative vibes from people EVERY DAY OF HER LIFE. Give her a break, she’s just expressing herself.
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Nerida makes some excellent points here, this is information that could be helpful to all of us who don’t have much to do with disabled people. I just think it’s a shame she chose to attack rather than engage with her reader. I’m sure it comes from a place of much pent-up frustration, but I think people are less likely to take things on board when they feel they are being rebuked… Especially when they may never have done the things she described. Some people are insensitive, but it doesn’t follow that we all are just because we don’t know what it’s like to parent a disabled child.
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That’s the point she’s making, people don’t realise their inappropriate behaviour around people with a disability.
There was no attacking. It’s interesting you perceived it that way.
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Interesting? Why? Nerida describes some pretty appalling behaviour by telling her reader not to do it. A natural reaction to that could be to go on the defensive and say “But I don’t do that!”, then focus on defending oneself rather than looking at Nerida’s POV. Yes, it’s great that Nerida shared with us just how badly some people behave, but she did it by pretty much accusing her reader of this bad behaviour. Here at Mamamia, she could have engaged with many of us as fellow mums, or even just fellow human beings and got people more “on her side” than debating her tone. Her message is vitally important, but just the fact that so many here are offering opinions on her tone suggests that her message is in danger of getting lost in the delivery.
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I think that was a clever tactic. People with a disability are grouped together and spoken to as a whole all the time. I think she spoke to people as a group to invoke the feelings she deals with all the time & reinforced her message that we should not be seen as ‘them & us’, we are in fact one group.
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Hmm, good point. I suppose just the fact that there is so much comment and debate about this article is a good thing. Whether the reactions are positive or negative, at least her message is getting plenty of attention.
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What Nerida is trying to say is that she would like people to treat her child as a person. I have a friend who uses a wheelchair and I’ve never noticed people staring because we are so caught up in our conversations! I don’t notice the wheelchair.
Give your child a gentle tap and tell them gently ‘don’t stare. It’s rude to stare’ If they ask what’s wrong with that kid? tell them you don’t know. Be honest with your kids. Great work Nerida
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Um, what is with the people complaining about others comments about the tone of the article? Nerida put this out there to be read, and I would hazard a guess that the top of her list of intentions was to educate people about the right way to treat her son. It is highly important for her to know that her derisive tone got in the way of the message. There are lots of parents of children with disabilities and chronic or confronting illnesses that write blogs regularly to educate others. They don’t fall into the trap of coming across as bitter or ungrateful for people’s good intentions, because that is the easiest way to lose people. This will be a great opportunity for Nerida to reflect on how she can better get her message across and there is nothing wrong with that – I am sure she knows that having a go at people for smiling or saying “I don’t know how you manage” is not going to teach them what they should do or say. She is not above everyone else in her needs and feelings just because she has a child with a disability, and being angry no matter what someone says or does will not educate them. Perhaps instead of telling people they are rude if they look away, rude if they look too long, rude if they smile, rude if they don’t, rude if they empathise and rude if they ignore, Nerida could come back and explain to people exactly what they should do, because not everyone knows how to behave. If any kid is having a melt down – even a neurotypical one – it is almost immpossible not to look, unless you are deaf and depending on the day we are having we could be thinking any number of things, mostly positive, but people are human. It isn’t our fault your kid is making a scene and you’re embarrassed – and it isn’t going to achieve anything to pretend their not making a scene and you’re not embarrassed, that’s what parenthood is all about.
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I suspect not all people that look in their direction offend Nerida, it’s only those who are blatantly obvious.
I didn’t take any offense or negativity to this article at all.
And the author did answer your question Lucinda – refer to the second last section of the text – Treat them as you would treat anyone else.
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Did people read it and have an opinion? Would they have without the emotion? How many of those other pieces you mention have people read? She seems smart to me.I bet she knew exactly what she was doing.
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Am I the only one that sees the irony here?
All these upset commentors because they think Nerida has just once condescended to them or offended their point of view – Nerita is condescended too EVERY day and offended by people’s attitude to her child but she expresses her point of view and she gets – well…..this response.
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I was thinking about this earlier. Its quite okay for her and her son to be ridiculed every day, talked down to, made to feel like they don’t have a voice, but to even hint that any of that might be hurtful, or that it might just make someone outright angry is offensive. People have asked how the disabled and their carers want to be treated. Here it is, in black and white, with out delicacy and without being overly offensive.
Don’t take it personally – if you don’t do any of the things in that article, then its probably not aimed at you. And you might not get that the head tilt smile can be offensive, but you know what? Its probably not the first one she’s had that day
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In my previous career as a psychologist I worked with many people with a vast variety of disabilities. I remember meeting one new client and asking her if she would be more comfortable in her wheelchair or if she would prefer to use one of my armchairs. She looked at me in astonishment and said that in 25 years of being in a wheelchair no-one outside her family had ever asked her that. She is capable of getting in and out of her chair (which I didn’t know when I asked). We need to remember that we don’t know what other people feel, or what they are capable of. So we shouldn’t judge with our eyes, but rather connect with each other at a basic, decent human level no matter who we are interacting with. I always offered able-bodied clients their choice of arm chair so I should not assume a person in a wheelchair doesn’t deserve the same level of courtesy.
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There is a family that I often see at the park. The parents have two kids that are adopted from very different backgrounds. The kids are gorgeous and I stare at the family because I admire what a diverse and unique family they are and I wonder what it would be like to be in their shoes. I stare at numerous families or kids and sometimes I will approach them and comment as to why I am staring. I am kinda saddened by this article, because it depresses me that something as innocent as admiring another person can be so badly misconstrued.
But her son is different. My sons are different. I am different. That is what makes this world wonderful. I do acknowledge that sometimes the stares are not one of admiration, but if you go through life not giving the benefit of doubt more than doing so, then life will be much harder than what it should be.
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While this is helpful in understanding how someone with a visible disability might feel, unfortunately it’s not always so black and white.
I have two children on the autism spectrum who appear ‘normal’ to most people that don’t know them really well. I’ve been in situations where they could easily be that child staring or making inappropriate comments about another child who may have a more visible disability or just a child they didn’t like or were curious about. It may be hurtful for the person at the other end, not to mention embarrassing for me, but unfortunately not always something I can easily correct without them going off the deep end and behaving even more rudely as they have a major melt down for having attention drawn to their behaviour and being told how to act in a public place where they are already feeling stressed. It’s a terribly delicate balance, and when it tips over I will often feel judged all the more harshly for my parenting/lack-of parenting skills since my kids just look like normal kids behaving like horrid brats, despite me discussing appropriate behaviour on a regular basis when they are home (and therefore in a theoretical situation which doesn’t always translate very well into practice). Sometimes I may react inappropriately too. This is not without the best of intentions, but sometimes I will make an error of judgement because I am tired and have enough problems on my own plate and so I won’t notice the subtle nuances of inappropriate communication (or lack of it) that you may have felt was occurring from us). In fact I may be so exhausted I am just staring right through you and your child and everyone else in the room as I try to stay awake and gather some of my own thoughts. I may not even have noticed your child has a disability or even exists. I don’t mean to sound insensitive, but not everyone will have the capacity to react in a perfect way to you and your child when they see you, and even if they did, such a manner may not be the preference of another parent in the same boat as you. We are all different, and I think the best we can do sometimes is try and forgive and hold off the judgement – we all have our crosses to bear.
Having got that off my chest – I would like to say that I’m still grateful for the insight your article provided to what it might be like to live with a child with another disability and hopefully this will help me behave more sensitive next time i’m in a situation like the ones you described.
Your son sounds like a lovely little boy Nerida. Hopefully he doesn’t have to endure too many rude comments and stares that make him feel uncomfortable. But just be aware that it may be coming from a child (or parent) who is not so perfectly ‘normal’ themselves.
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I clearly have a lot of feelings about this because I’m commenting a lot. Whatever.
It’s been pointed out a lot here that Nerida seems angry and bitter, and that if a lot of people are saying it, then it must be true. What if most of the people with disability in their lives are telling you why the things mentioned in that article hurt? Because they are. And none of you seem to be really getting it.
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My daughter is blind and her eyes look really strange to other people. In all honesty kids stare its what they do. They come up really close to look at my daughter as they have not really seen anything like it before. They mean no harm and are curious and I get that. Even the ones who point and stare and sometimes smile really mean no harm they just don’t understand. Adults stare lots too and that’s cool too.
Really it just depends on how I am going to how I react – if feeling good then stare away. If I a having bad moment then it may make me sad but that is not their fault.
It’s my 6 yr old daughter who gets very upset and angry when kids stare – but I try to explain to her it is because they are interested in her and mean her no harm. I remind her it is the same as when she stares at someone in a wheelchair and asks why. She then gets it.
I often get asked ‘I don’t know how you do it’ and quite frankly I wonder the same thing myself and sometimes it makes me feel better people acknowledging I have some greater challenges. Hell I even ask my friend who always looks great, is on time to everything and has 4 normal kids the same thing – I hope I have not offended her – but I don’t know how she does it as I really struggle sometimes.
If you offer to help again depending on how I am on any given day I may accept or politely decline. But isn’t that like most people – good days bad days. I never have rude comments and everyone is pretty much lovely commenting on how active he is and they are the same sort of comments my other kids get….it’s just what people say.
On a whole people have really genuine intentions but sometimes it comes out funny – I always try to think they mean well. People are often telling me my daughter is amazing with what she does…well she is and I agree so I take it all as a big compliment.
Maybe Nerida was just having one of those bad venting moments and it happens – hope she doesn’t feel that way all the time
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Well said. Children are naturally curious, it’s part of their learning. It isn’t learned behaviour and it is innocent. A baby breaking wind is never counted as rude, in fact, the behaviour is encouraged in infants. Yet when they become older, the same action becomes socially unacceptable and inappropriate. In the same way, staring is fine in children up to the age of seven or eight.
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I reckon most of the things you experience as a parent of a child with a disability are dead set the same as what you get with your average child with a tendency towards being a pain in the butt.
People head tilt with sympathy, give death stares, other children stare, ask why your child is doing whatever they are up to etc.
They empathise, sympathise. When I have all 3 of my kids people often say they don’t know how I do it.
As far as I can see you’re just a parent.
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And there is one of the worst comments, and most hurtful things of all. When I describe my sons’ behaviours to people I quite often hear this response. You know what? Its different. Yep, your child might hit you every now and then. Not 5 times a day. Yep they might have a meltdown. Not every time you leave the house, multiple times. Yep they might have smeared poo on the wall. When they were 1, not 8.
Its different. And disability just comes down to bad luck and possibly genetics. At the end of the day, that’s all it came down to, the difference between your child and mine. Luck.
Still, with the attitudes displayed here by a lot of people, I reckon that I might overall be luckier.
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Your comment shows that you have not got the faintest idea what parents of children with disabilities go through. Not a clue. Georgie D is right – your comment is one of the worst and most hurtful comments I’ve read here so far.
I have 3 children, my older two don’t have a disability, so I know what it’s like to parent an “average” child. Yes, parenting any child is a hard job. But now I face challenges I’d never even imagined before having a disabled child. Your comment is downright offensive. If it’s the sort of thing the author faces every day of her life can you blame her for the “tone” of the article that seems to be upsetting so many people??
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Are you guys all from a forum who have been alerted by one of your members that there’s a blog post on mamamia that has sparked criticism of parents with children with disabilities?
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No, Essen. Believe it or not, sometimes even parents of children with disabilities like to check out Mamamia when they have a few precious moments of time to themselves. Outrageous, I know.
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Bravo Nerida. My brother had a disability and the way that parents handled their children’s curiosity and staring was unbelievable. It used to irritate me that they either would not explain to them that yes he looked different but was the same – I think better – inside as all of us! Or just tell them to stop staring! He just wanted to make friends and love everybody. I on the other hand wanted to yell and scream at their ignorance. It’s sad that we haven’t evolved yet to treat everyone as we would like to be treated. I teach my niece and nephew to always ask me about things so I can explain – but never to stare…. I hope I can help them understand and accept all people’s differences- not just disabilities.
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This is a fantastic post thank-you
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Strongly agree that parents need to take responsibility for the things their kids do and say especially if it’s at the expense of other people. They are kids, we all know they can’t help it nor can we control it but what you can do is be brave enough to acknowledge their lack of understanding and apologise if need be.
It’s the best thing to do to not only teach your children and set a good example but to treat the other person with the respect they deserve.
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While it’s great to hear this perspective, unfortunately it’s not always so black and white. I have two children on the autism spectrum who appear ‘normal’ to most people that don’t know them really well. I have been in situations where they could easily be that child staring or making inappropriate comments about another child who may have a more visible disability or just a child they didn’t like or were curious about. It may be embarrassing for me and hurtful to the other person involved but unfortunately not always something I can easily correct without them going off even more rudely and possibly having a major melt down for having attention brought to their behaviour or told how to act in a public place where they are already feeling stressed. It’s a terribly delicate balance, and sometimes when it tips over I will feel judged all the more harshly for my parenting/lack-of parenting skills since my kids just look like ‘normal’ kids behaving like horrid brats. And there are times when I just have enough problems on my plate and I’m not even going to notice the subtle nuances of inappropriate communication (or lack of it) that you may have felt was occurring from our end). I may not remember the correct way to behave in every situation and I may even be so exhausted I’m actually just staring right through you and your child and everyone else in the room so as to try and stay awake and gather some of my own thoughts. I haven’t even noticed your child was different. Sorry if this sounds insensitive, but not everyone will have the capacity to react in a perfect way to you and your child when they see you, and even if they did, such a manner may not be the preference of another parent in the same boat as you. We are all different, and I think the best we can do sometimes is to try and forgive and hold off the judgement – we all have our crosses to bear.
Having got that off my chest – I would like to say that I’m still grateful for the insight your article provided on what it might be like to live with a child with another disability and hopefully this will help me to be more sensitive when I’m next in a situation like the ones you’ve described.
Your son sounds like a lovely little boy Nerida. Hopefully he doesn’t endure too many rude comments and behaviours that make him feel uncomfortable. But sometimes it just may be that the other child (or parent) is not so perfect either.
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I am a mother of two young boys aged 3 and 5 but have a sister that has cerebral palsy who is now 19. They are in so many ways more developed then she is and they are starting to question why. I agree with you it’s about honesty and respect. People need to treat people equally. Loved your post.
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Nerida opened her piece by saying that she was an honest, realistic and practical person…… and this is exactly how she has come across. She has told it ‘as it is’ from the perspective she knows – and this is an invaluable insight to those of us who have not walked in similar shoes.
I appreciate her honesty, realism and practical approach – and I encourage anyone who thinks the tone was ‘off’ to consider why they are really concerned about the tone… why can’t they see the messages for their intent ….why they feel they need to criticise rather than show compassion…..keep asking themselves ‘why’ until they get to the root of it … perhaps its more about them and less about the ‘tone’ ….perhaps …..
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Yes, you have hit on what is bugging me. What does this “tone” have to do with it? Why has it got everyone so riled?
Also, it seems hypocritical to dismiss the content and the intent of the article because of the “tone” and then for the same people to moan that Nerida doesn’t understand the intent of their smiling head tilt in the very next sentence.
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thank you – great post.
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Nerida, thank you for writing and sharing, it is so important. My son does not have a disability but he has a major congenital heart defect, he was born with half a heart actually. He spent 12 months with a naso- gastral feeding tube and I can relate to your story so much. There is nothing worse then trying to leave your home and have a normal life out in the world with your child, yet when you are engaging in that world to be left with the feeling of being so “other”. My heart goes out to you et famile xx
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Great article. I have taught both my sons not to stare or comment on anyone. I used the same method as teaching ant manners – I repeated myself until it sunk in. Now, even my 7 year old doesn’t stare at anyone. Any questions he has he saves until we are alone.
I wish you and your son all the best. HE is lucky to have you and vice versa.
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Would this be an accurate summary of the objections to this article?
“I don’t like it that you sounded angry that a significant number of people stare at your child and generally treat your child like crap in public. You sounded grumpy, therefore I will not take on board anything you said in this article.”
Ugh. UGH! I don’t know why I even came back to read more comments. An article on the internet hurt your itty bitty feelings and made you defensive because it sounded like you were being told off? Get over yourself. How do you think it feels to be on the receiving end of this s*** day in, day out?
How hard is not to stare? How hard is it to ask your child not to stare IF you find them doing so? All I can see are people who are more concerned about their own feelings than how they are making a disabled child feel.
If I do something to make someone with a disability feel bad then I will own it even if I did it out of ignorance. I’m a big girl. I can deal with feeling a bit awkward or stupid. I will apologise and I will educate myself about these things. It’s not THAT HARD.
If you are truly interested in bettering yourself, in being compassionate and being a person that makes the world a bit better place, how about taking some of this stuff on board even if Nerida does sound angry? Because you know what? Some people put up with a lot of crap on a daily basis and it makes them tired, it makes them angry, it makes them exasperated. So instead of bemoaning the fact that you don’t like their tone, how about doing your bit to lessen their load by treating them how they would like to be treated- with COMMON GOD DAMN DECENCY.
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Or perhaps Neeks, common decency to most people IS giving a sympathetic smile to another Mum or commenting in admiration that “you don’t know how you do it”…
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Exactly. Not knowing about something or trying to show a bit of empathy doesn’t mean you lack common decency. I’d have thought it was actually a good example of it.
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I don’t know how many articles I have read by people who say that people saying ‘I don’t know how you do it’ is meaningless. They do it because they HAVE to do it. Just like you would would if fate dealt you a different card.
Just don’t say it, even if it comes from a place of admiration, as pointed out in her article. She doesn’t want your admiration. She justs wants to get on her with her day and people constantly reminding her that she has it tough must infuritate her and others!
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Which is fine, but intent isn’t magical so if you know that SOME people don’t find it helpful then maybe you will take it into consideration. You don’t necessarily have to change the behavior but being aware that it can SEEM condescending and be misinterpreted might be factored into your reaction. What I object to is that people have stated that Nerida’s interpretation is flat out wrong. It seems to be a lot of stamping her down instead of an honest communication of feelings and intents. There is a difference.
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Like x 1000!
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Thank you. You just articulated all of the anger and frustration I am feeling over the people who are objecting to the phantom tone used in this article.
And you know what? I am angry and I can’t speak for Nerida but I’m also slightly bitter. And people commenting here should be very careful – everyone here is just one stroke of bad luck away from living with a disability.
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Thanks for the article, Nerida.
Our son is nearly 25, has Down Syndrome, autism and speech-language problems. His IQ was around 40 the last time he was tested. He has moderate disabilities.
But despite all this, he knows when people stare. He hates it when people talk about him. Just like you would, if it was you others were staring at or talking about.
Please give him the dignity you’d like.
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You may see a disabled person once a month or less. One stare or careless comment from you may seem insignificant. To the parent or carer of a child these stares and comments add up over the course of a day so its little wonder that the writer feels frustrated.
And as for people commenting on her ‘tone’, so what? Does this ‘offend’ you? Like your stares and comments ‘offend’ her? Why should she be ‘polite’ about other people’s rudeness?
People seriously have to take a good hard look at themselves.
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See, this is what is getting people riled up. “You do this, You do that wrong”. I don’t stare. I don’t make careless statements. I don’t speak to anyone like they’re an idiot.
Having dealt with a few dickheads doesn’t make everyone else a dickhead, you know?
Imagine if it was turned around and someone said “I knew a disabled bloke once and he was a total jerk, so every bloke in a wheelchair is a total jerk”? Yeah, not good, is it?
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Well Kris, if you don’t do any of the things she mentioned, then she is isn’t adressing you, so not sure why you care about her tone.
And if you don’t do those things its because you KNOW that they aren’t polite which backs up her point in the first place!
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I don’t not do those things because I know they’re impolite. I act the way I do because I think everyone should be treated properly, and until they prove otherwise, disability or not, I treat everyone with respect. Nothing to do with what I think is polite or impolite. I don’t go out of my way either way. And this is the problem with this article. It says that everyone does all this terrible stuff, and that is patently not true. When it says “You” and “You’re”, how are people supposed to take it and respond to it?
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I’ve never walked in your shoes or experienced the frustration of people assuming that life is “difficult and horrible” for me.
I’ve certainly chatted with people whose children have special needs and sumpathised with the challenges they face. I’ve felt grateful that, through sheer fate, my life is easier than theirs. I’ve felt angry that they face extra expenses, medical procedures, long term therapiqes and lower prospects of their children living independently. I feel strongly that our nation should be providing better support for them and sharing the cost of these requirements.
I think society has been encouraged to feel sorry for parents like you, so that we donate to charities and encourage governments to invest in services. There’s obviously a downside to that sympathy that most of us don’t see.
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I remember when I was about 7 or 8 I was at some soccer fields with my mum, watching my brother play. There was a child there who had some form of skin disorder, and I leaned into my mum, looking at the kid, asking “why is his skin like that?”. His mother must have seen me looking, as she stormed over and yelled at me and said something along the lines of “how dare you stare, there is nothing wrong with him, you are so rude and awful”.
Well, I was a genuinely curious kid and I didn’t mean anything by it – I was just interested. But I am still affected by that…if that mother had come over and said, “do you have any questions?” or something, I’d probably have grown up with much less fear of saying or looking at someone the wrong way.
I’m sure she was just having a bad day, but taking it out on a 7 year old…phew. Even my mum was overwhelmed by the reaction! She would have likely told me her thoughts and that it was rude to stare – sorted.
So please don’t assume that kids are trying to be mean if they are staring – this is normal when things are new and they are still learning.
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How do you think this person feels being stared at every day of his life?
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I agree with other commenters, that the message (be kind) is at odds with the tone and delivery (a comprehensive telling off). I do understand the many years of frustration that would prompt such a piece, but I also understand that most readers would be taken aback. It’s certainly not how I would speak to people in my life, nor would I expect to be spoken to that way.
That aside, I’m genuinely curious about one thing Nerida – clearly, you’ve had a lot of children stare at your son. Have any of those children been disabled themselves? Perhaps not visibly disabled, but with a condition which would give rise to inappropriate social responses to your son? Obviously people have made some uncharitable assumptions about you, your son, and your lives…I’m just wondering if it’s always clear to you whether the children staring at your son are, or are not, themselves disabled.
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I loved this article for the discussion that has followed and what I have learnt today. I have often wanted to hear this perspective but have been too shy to ask for risk of offending. All people deserve to be treated with equality and with respect. This is sadly lacking in so many facets of our society. There are people who don’t mean to offend and there are those who are down right offensive. We have eyes, so therefore we look at the world around us and those who pass us by, big difference to staring. But there are also so many reasons for staring and stares are hard to interpret so some of the reasons I stare are; you have a cute kid who has got the biggest smile or is up to something cheeky and cool; your child has perfectly groomed curls and I am wondering how you’ve manage it; the I’ve been there look, when your child is having a melt down and the relief that we’re not having that day; the admiration towards a parent that is handling a tantrum magnificently and I am taking tips, I could go on… But empathy and sympathy is not pity. Pity is offensive. I do wonder how mothers with three children under five manage it, I wonder how many mothers going through challenging times manage it, sometimes I wonder how I mange it. We manage because we have to, there is simply no other choice.
To all those people who stare out of ignorance, stop. Look at a individuals values and the wonderful attributes. Notice their smile or beautiful eyes. We all have bad days and good days, don’t judge on a snapshot of a day
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I very much enjoyed your article Nerida. It comes from the heart and is what I would say if could write as eloquently. For me this article is not about attacking people but rather pushing the point enough to educate as many people as possible about how to react to people with a disability. That is not a bad thing and one we should all encourage. A lot of comments above are way off topic. The simple solution is for all of us to educate our children about differences, disabilities and the importance of embracing them.
And I might add that I have had to leave a shopping centre because of the stares I received when my son began taking his shirt off. It’s not fun, I cried and didn’t get my groceries
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I read this article as a person with a disability (although not always visable), and as a Mum of a 7 year old daughter. On my daughter’s first day of Kindergarten she started pointing at another student who happened to be a little person. It was a childs natural curiosity. So I took her aside and explained to her that people come in all shapes and sizes, but inside they are all the same. No one is better than anyone else and all people should be treated the way you would want to be treated. I didn’t make a big deal out of it, and I tried to keep the conversation on a level that she could understand.
That simple explanation seems to have stuck with her, at 7 she doesn’t point or stare at others. Sometimes she will ask me “why does that person need that wheelchair etc”, and I will explain it to her as simply and honestly as possible. But one of my proudest moments happened last year when she received an award at assembly. She was recognised for being her schools most empathetic student. The teachers noticed that she will always go out of her way to welcome and include anyone who is a little bit different, whether they might be a new student with no friends, a child with a disability or a foreign student who doesn’t speak a lot of English. Apparently one day in Grade 1, she became very annoyed with her fellow students who were getting frustrated with an autistic boy in their class who had to do things in a certain way. She asked the teacher if she could say something, and she gave them the same talk I gave her on her first day of Kindergarten. I was incredibly proud, I think empathy is so important.
As for the ‘sympathetic smile with head tilt’, I agree with the majority of posters, it’s a show of empathy for a fellow Mum (or Dad). I’ve been on both sides of it, I often try to give a reassuring smile to a parent whose child is ‘having a moment’, and I’ve received the same from other parents when it’s been my child. I also receive the sympathetic smile with head tilt when people either become aware of my illness/disability, or when I’m having a bad day and my symptoms are particularly obvious. I always take it with the intent it’s given and simply smile back with thanks.
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Wow, your daughter sounds like an astoundingly beautiful person. No wonder you are so proud
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Thank you so much Nina, we think she’s pretty special
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Really? Really? She is copping flack for this article?
I agree with every word you say. I’m not a mum, but I teach in a special school, teaching kids with a variety of disabilities.
I’ve written and deleted a lot in response to the comments, but in the end-if Nerida came across as snarky, well I’m guessing she was probably over the way she is treated, and of how he child is treated.
Take what she is saying on board, she is the one living it.
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I can understand the sentiment behind this article but I find the delivery negative and slightly condescending. What I take most from the article is that there is an assumption by the author that parents of children without a disability when in the company of children who do have a disability are coming from a place of judgement and negativity. Most people do not need to be told how to treat children with a disability. Let’s look for the good in people rather than assuming the worst.
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I have a child with a disability and unfortunately many people’s behaviour towards my child tells me that they DO need to be told how to treat children with a disability. I do try to look for the good in people, and I see it a lot and when I do it warms my heart. However, since having a child with a disability I’ve experienced a side to people I wish I hadn’t. Many people are just plain rude, or even worse, cruel.
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I agree with you. The tone throughout the article borders on bitter. Very condescending. Some people, especially children, don’t know how to react to disability, and sometimes we don’t realise we are staring, or speaking more slowly, etc.
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JessC, perhaps you need to walk in the shoes of a parent of a disabled child to understand how condescending and rude other people can be.
Nerida was asking people to educate their children (and themselves). I don’t consider that’s too much to ask.
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This is exactly what this parent is asking you to do…be more aware of your behaviour and start teaching your kids how to, so they feel more comfortable aswell. Is it really that much to ask?
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I’m sorry Nerida, but like others I feel the message you are putting across is lost in the tone of it. There is also a difference between straight talking, as some have put it, and being aggressive.
I have had the privledge of working with some wonderful kids who are disabled, disabilities which include autism, aspergers, and down syndrome. I assist the school which they attend with a modified sports program in AFL. A few things I wanted to point out in only my experiences (And yes, I am aware It is very different to working with children as to having one with a disability).
Kids stare. All. The. Time. Even those who have class with them. They are curious, and it takes a lot longer for a situation to compute in a childs head than an adults, so they will stare longer. It’s not malicious. It’s figuring out whats going on. Kids will stare at anything that is different to them – height, race, size, etc. Most of the time they are just figuring it all out. Do you not think tugging them away or telling them not to look only makes acceptance worse?
The ‘I don’t understand how you do it’ chat. I actually genuinely don’t – I’m asking out of interest – I adore the kids I work with but they can be exhausting with all their energy! I’m more after some tips
Head tilt – I think you are being a bit narky on that one. As most parents have said – they see a child on the floor having a tanty – it’s one of solidarity, not division.
It’s only my opinion what I have said – and I do agree with alot of what you have – but It feels that by cutting off all stares/questions etc you are cutting off a lot of love and interest too
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LellaK, as you put it “it is different to working with children as to having one with a disability.”
Very few of us can imagine what it is like to walk in Nerida’s shoes – both the joys and frustrations (and yes there would be so many joys). Even with a child with autism, I would not be so arrogant as to assume I understand.
A beautiful piece Nerida – THANK YOU xxxx
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Last year a student with MS and a range of learning difficulties started at our school. One of my kindy students asked her ‘what’s wrong with your brain to make you walk like that?’. Unfortunately another teacher was on duty and ripped her a new one because apparently that was ‘rude’.
I saw it differently. I explained to my student that it was ok to be curious and to want to know more, but it is important to ask an adult about it. I also talked about how she hurt the other child’s feelings and my student went and apologised to her. Teaching our children to ignore differences is not the right way to go, teaching them that differences do exist (and why if there is a reason) and that it is ok is a much better approach to life IMO…
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She’s not asking that people ignore difference, merely that its not the job of people living with disability to school everyone else in life about it. What you did was correct.
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Whether you or anyone else likes it, people DO learn from someone with a disability. Far more than they would from a textbook or something from the internet. I agree that it’s not someone’s “job” to teach others about themselves, but “incidental learning” happens everywhere and for any reason. Birth, death, accidents, disabilities, you name it, what’s most important is how it’s handled.
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Of course they do. But the disabled person doesn’t have to be your only point of reference. There are other ways of finding out information regarding disability – I was given next to no information when our sons were diagnosed, so I got my information off google. Why is that so hard for everyone?
If you google “How do I explain autism to children” you’ll get heaps of hits.
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My youngest has a genetic disorder that is mostly cosmetic but his eyes are are semi-asian like and his eyelids are droopy. I’m used to people staring, commenting on how he must be tired, the sympathetic smile and head tilt and the confused glances because the combination of very blonde hair is not “right” with his asian-like eyes.
AND you know what? I don’t care if people stare. If people ask, I tell them, adults and children. Education is a powerful tool……
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For those people commenting who have disabled children, I have a genuine question to ask…
If you’re in a public place, for example a shopping centre, and your disabled child is having a major tantrum/meltdown, how would you feel about a stranger offering help? I’ve seen this happen one or two times where the mother is trying to manage her other children at the same time and I’ve felt like I should approach with a simple ‘Is there anything I can do to help?’ but haven’t wanted to offend anyone.
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Personally I would love an offer of help, it’s highly likely I could do with someone to rescue my trolley/grab my bag off the floor etc and even if I don’t the offer of help would likely make my day
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I would say help, “is there anything I can do to help is perfect” they may not be anything you can do, but minding the shopping while the child is removed from the situation and put in a safe place helps.
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I. Would. Love. It.
Seriously. Just someone to hang on to the bags while I take care of him. Beats the hell out of tell me to “get your kid to shut the F*** up” (which HAS happened)
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If only there were more people like yourself around. Offering someone assistance these days is usually followed by the words “f.. off I don’t need your help.”
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In all honesty, in the heat of the moment, I would assume that the person approaching would not be approaching to help, mainly because in all my years of going out with 2 autistic children (9 yrs and 8 yrs old) people have been combatitive rather than helpful so I would probably have my lioness protecting her cubs face on.
That said, I can recall being on the floor with one of them in Woolies, in the full throws of a meltdown, tears streaming down my face, and was approached by an employee who said “I don’t want to make this worse for you, but you are doing an AMAZING job” and I was just so grateful. The only time someone has EVER been nice to us, in that situation. And I have been in that situation many, many times.
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Well I understand the cute lioness face because it generally comes with that completely puzzled look. Puzzled because people tend to stare, point out, etc rather then offer assistance.
It’s the Germine Greer face that comes out of nowhere with that I’m all woman hear me roar look.
But each to their own. If someone wants my help, cool, great, bananas. If not well .
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Wow. That’s so rude! How dare someone say that.
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Elsie, my son is now an adult, but when he was younger and having a meltdown, I would have loved to have anyone offer to help with my non-disabled son. They never did. In fact, often I got disapproving stares that seemed to ask ‘why is your child in public?’
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Let me just start off by saying I have no kids, thus, no children with a disability. My little brother, who is 9, has a minor speech impediment which used to render him unable to speak at all, but now he can speak fine and only has a minor lisp and trouble saying a few words here and there. Aside from that, he has dysbraxia (a form of dyslexia) which affects both his speech and gross motor, so that alone has been enough of a struggle for him and our family. We’ve come across our fair share of ignorant people throughout his life so far, but to be honest it’s better when people ask questions. He’s not as good as most kids at a lot of things (particularly sport as he is incredibly uncoordinated) but also has chronic asthma so we try and encourage him into team sports. You can imagine the looks he gets from other kids and parents. Sure, it’s not great but the more people ask, the easier it is for us. Usually my mum or stepdad will offer up the information so that people know straight off. It doesn’t affect him badly, but enough that people notice.
Of course, I can’t imagine what it would be like in your situation. But the whole ‘don’t allow your child to stare’ caught me off guard. Children stare, it’s a natural thing for them to want to do. Usually they do it completely harmlessly, but it’s a way for them to assess things and figure things out. I also think it rude for people NOT to look at children (or adults) with a disability. I always make a concious effort to smile at them if I see them, as I would want the same for my child and wouldn’t want them to think I’m avoiding them on purpose.
Again, I understand that I’m not in your shoes and my brothers disability is not as intricate as your sons. But as an outsider I DID find this article a little bit offensive. I applaud all parents of disabled children – no matter what the disability is and I think that’s what people are trying to say when they say things like “I don’t know how you do it” – they are not trying to be condescending or horrible. They’re simply acknowledging all the effort you put in.
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Totally agree!
The tone of the article was very condescending and people out in the world, when you come across them doing something that displeases you, are living their life based on their own experiences.
Yes, they may not know how to treat a child (or an adult) with a disability but that’s life and it’s going to happen.
I say this not to be harsh but to put the point across that everyone can’t have experience with everything that is sensitive territory for someone.
It’s just impossible.
Being harsh with people, as a lot have read this article as being, is just pushing people away, saying they’re not ‘good enough to understand you and your life’.
I empathise with the difficulties you face from your perspective with ‘other people’ but perhaps try not to be so sensitive about what you ‘think’ other people are doing/thinking!
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I know a young man who is the same age as my eldest daughter. He has both Autism and Aspergers syndrome. My heart goes out the his parents, especially his mother, who now only occassionally needs to confirm what it is that he wants to say before he will speak to peolpe he has never met before. Due to a huge committment made by his parents he can now conduct a conversation with friends, speak to a group publically and look friends in the eye. I reckon this is great, especially given that his parents have been diagnosed as having syndromes too – one with Aspergers, and one with Autism…
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How can you have autism and aspergers, they are on the same spectrum??
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I was wondering the same thing, my understanding is that when a person is diagnosed with ASD they have either autism, asbergers or pdd. I’m off to re-read my son’s diagnostic reports to make sure I haven’t completely misunderstood!
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The DSM IV lists Austism, Aspergers and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) within the category of Pervasive Developmental Disorders.
In practice this has been referred to as the Autism Spectrum. The DSM V (approved only a few months ago) has consolidated the key diagnostic features of all three and refers only to Autism.
I have heard of diagnostic substitution whereby a child was originally diagnosed as meeting the criteria for Autism but then on review several years later was re-diagnosed as having either PDD -NOS or Aspergers.
I am unaware of how common this is though.
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obviously Freemel isn’t aware its all on the same spectrum. Autism covers the entire spectrum but is often used to describe a person on the “lower” end of it. A person who describes themselves as having Aspergers is on the “higher functioning” end of the Autistic spectrum. The term Aspergers has now been overtaken by the term ASD Autistic Spectrum Disorder according to the official DSM.
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I agree! Children with disabilities are still children. I grew up with a little brother who had down syndrome and grew to be very protective of him around other children, the staring and silent whispers around him made him very self conscious and upset me a lot too.
I remember an incident where a little girl of maybe 8 or 9 (old enough to know better) stared and pointed at him. Parents please try and educate your children on good manners around people with disabilities when you’re also teaching them not to point or call each other names.
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You know there seems to be a trend here on mamamia – if you have a child wih a disability, you aren’t allowed to complain about it, or the way you are treated by the public. God help you if you do. Would the reaction to this article have been better if the author said “pretty please, can you not stare”? People here are saying they want to know what it’s like, well here the writer is, giving it to you.
As for how to stop your children from staring, its really quite easy. Take them by the hand, say “honey, don’t stare, its rude” and there you go. Lesson learned.
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Georgie, I don’t think anyone has a problem with people complaining. I think the majority of people do have a problem being told “YOU do this, YOU do that” when we don’t, or try not to.
As I said before – it’s a two way street – if you want people to understand, you will need to give a bit in return. Difference is noticeable and will be commented on, or asked about. I don’t think anyone is suggesting parents or carers or families of people with disabilities should be saint like and tolerate everyone, but by the same token, you don’t have the right to tell EVERYONE how terrible they are, when we’re clearly not.
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Said it for me. This is what had bothered me about the article.
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Bingo. Totally.
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