How do you explain disability to your children?

Michael

This is one of my favourite photos. It’s my older brother Ross, and a chap called Michael. It’s a special picture because both Ross and Michael passed away within a couple of years of this picture being taken, and it reminds me of some really happy times.

My adoptive parents were residential social workers and so I've always known and worked with people with physical and learning disabilities. When I was at uni, Ross and I used to take groups of residents from my Mum's care home on holiday – this photo was taken on a holiday in Scotland, in the same place where our whole family stayed when we were kids.

Michael was one of our longest-standing residents. He could be very loving and had a wicked sense of humour, but he was stubborn as a mule, and could fly into a fury if you asked him to do something he wasn't keen on. He loved to spend entire days copying words and letters out of books, and his favourite thing to watch on TV was nature documentaries – he loved animals.

Like many men of his age with Downs Syndrome, Michael spent many years in a hospital. His speech was poor because he was born at a time when it was thought 'kinder' to remove the teeth of people with Downs  rather than subject them to the trauma of dental care. But he was able to communicate, using a combination of sounds and Makaton sign language.

Michael was very happy, but he looked and sounded different to most people. When you knew him, it was easy to forget about, but strangers would often stare. But what used to upset me far more than that was when people would steer their children away from us in the supermarket, or tell their children not to look.

I'm sure, looking back, those parents had the best of intentions, but I still think they were teaching their children that disability was at best embarrassing and not to be talked about, or at worst, frightening.  Why is this?

I know as a parent that sometimes it's hard to look at someone with a disability without thinking, "Thank God my child is healthy", but I do bend over backwards to try and teach Flea that disability is just part of some people's lives, and it doesn't stop them being smart, or funny, or kind, or – in some cases – bad-tempered old gits. I think there's a balance to be struck between being sensitive to someone's disability and remembering that they're not JUST a disability – certainly, Ross and I used to tease the residents we cared for just as we teased each other, or any of our friends.

If Flea is staring at someone or asks why they look different, or don't walk, I tend to try and explain openly, about what that person's disability might be. I've found often that people will talk to children directly and explain why they look a bit different, or can't do the same things as her, if Flea asks them directly. 

I'm not sure this is the right approach – it's just the one that seems most respectful to me, based on my own experiences. I’d be really interested in your tips on this – how did you introduce the idea of disability and difference to your children? Do you find it difficult to know how to strike the right balance?

About 

Sally is a full-time blogger and founder of the Tots100, Trips100, Foodies100 and HIBS100 communities, along with the MAD Blog Awards. She spends a bit too much time on the Internet. She’s also a very happy Mum to Flea, the world’s coolest ten year old.

33 Comments

  1. Holly@itsamummyslife
    10th May 2010 / 7:44 pm

    Great post and interesting because I just commented on Jen’s post at thekingandeye.blogspot.com about reactions to her son with Autism. I have always believed I’ll take your approach to this. Be as open as I can about the disability and explain that it’s just a part of that person. Of course children are curious and we have a duty to help them understand the world and make their own decisions and choices. Explaining that all peeople aren’t born the same way is simply the way life is and something children need to realise doesn’t make a person better or worse than another person, it’s just the way life works. Well that’s what I think anyway. What an interesting insight into your childhood too.

  2. S.
    10th May 2010 / 7:54 pm

    The theme for this month at Una’s school is ‘tolerance’ and they sent home a thing for us to discuss with our children which includes answering questions about difference and disability open and honestly, which is what I also try to do. I’m just matter of fact about it, but then I spent a summer vacation working for Scope with people with odd twitches and strange speech and like your experience of course they’re also witty and smart and randy and all the rest of it!
    I thought it was great that CBeebies introduced Ceri and that presented an opportunity to talk to Una about disability, though I’m not sure she really noticed ’til I pointed it out. And I am kind of gratified that she also didn’t notice the different skin colours of some of her friends in her class until something came up and we were talking about issues connected with race and racism and she said ‘what’s a black man?’
    But the thing from school is a bit odd because it reminds me of that episode of South Park where the kids get sent to Tolerance Camp. The fact is, it’s the wrong word. As Stone and Parker point out, we ‘tolerate’ dog shit on the road. Tolerance isn’t really what we should be striving for, it’s acceptance.

  3. Heather Bestel
    10th May 2010 / 8:09 pm

    My daughter is 12 and from an early age I introduced her to my students who have physical and learning disabilities. We also have friends who have physical disabilities, so she naturally accepts this as ‘normal’. I have taught her Makaton and British Sign Language and she feels comfortable asking questions about disability if she wants to understand more.
    Both my husband and I were born with impairments but we don’t let them ‘disable’ us and so our daughter has learnt that she can achieve whatever she wants no matter what or in spite of anything.
    I too have encountered the stares when my students and I are out as a group and sometime it catches me unaware because, as you said, it ceases to exist for us. It saddens me and frustrates me. I wish that everyone had the chance to mix easily. People are missing out on so much – my students are some of the happiest, kindest and thoughtful people I have ever met. It’s a shame not everyone can meet them 🙂

  4. 10th May 2010 / 8:44 pm

    an interesting question and interesting comments. we’ve wandered off the path, and i’m not sure what the normal is anymore in most directions. our various home ed groups include a huge range of people; some children exhibit a wide range of temperaments and physical abilities, but i cannot be sure how i have described disability as such. i might say ‘that’s jim, and he likes his mum by him because he has difficulty moving’. then my kids take that in their stride. they tend to play alongside and with people who they feel kindred spirits towards, rather than what they look like or how ‘unnormal’ they can each be. i agree with the ‘tolerance’ theme. i feel a bit uncomfortable with that, because it suggests we would be intolerant without it, but i have found people in my world are not.

  5. 10th May 2010 / 10:04 pm

    I have a daughter with cerebral palsy and for my money, you’ve got it about right.

  6. Susie
    10th May 2010 / 10:07 pm

    Really nice.
    Think people with disabilties teach us a lot about ourselves.

  7. 10th May 2010 / 10:15 pm

    It is so the right way to go about it IMHO Sally.
    Children are naturally curious and say what they see ‘why has that man got one arm’, ‘why is that man so short’ (always always at full volume too of course!)
    This is the world our children will grow up in so it’s important that they know there are many many different sorts of people in it and if they understand right from the get go, tolerance won’t be a word they will ever have to use because it will just be a part of their lives.
    In my son’s school year there are 2 children with autism, 1 with a growth problem, 1 with ME, 1 with Downs.
    He’s asked about them, I’ve told him and that’s that. They’re just other children in the classroom now.
    Children will stare and yes it’s embarrassing, but I think it’s far worse to steer them away and act like there is something awful to shield them from when just talking and being honest is going to help them so much more in the future.

  8. 10th May 2010 / 10:18 pm

    Oh, thanks Holly, I’ll head over for a read. I hope it’s the right approach but I guess time will tell.

  9. 10th May 2010 / 10:20 pm

    Hmm. I’m not at all sure about “tolerance week”.
    I do remember being nervous of some of my parents’ clients when I was younger, but I think the matter of fact thing is key – I think nervousness was probably natural when faced with someone who shouted or twitched a lot, but my parents helped me to see it as not such a big deal, which I’m grateful for. Hope I can do the same for Flea.

  10. 10th May 2010 / 10:21 pm

    I used to get SO upset when people would ‘shield’ their kids from people I was with, as though they were dangerous or contagious – I appreciate it’s not intentional but it’s so hurtful.

  11. 10th May 2010 / 10:21 pm

    Sounds like such a positive approach, and very matter of fact.

  12. 10th May 2010 / 10:22 pm

    Thanks Susie. I think you’re right in as much as our attitudes to people who are different are very revealing, definitely.

  13. 10th May 2010 / 10:24 pm

    I don’t have much experience of autism but one thing I used to struggle with was when people would say to me: “Oh people with Downs are so lovely” as though having Downs suddenly meant you were impossibly cute and funny and always happy. It’s the idea that the condition defined them and I knew from experience that people with Downs were just as capable of being grumpy, mean, sad or whatever as anyone else.

  14. 10th May 2010 / 10:33 pm

    I get a bit impatient with ‘tolernance week’ and ‘lets talk about disability’ type thing… Because these things are just.. normal.
    Some people have sticky out teeth, some have green hair, some have a limb missing, etc etc
    I discourage the kids from making loud personal remarks about people, wheather it be about the colour hat they’re wearing or the fact that they’re in a wheel chair because I feel it’s potentially helpful, having said that, I’m more than happy to discuss it – I worked for some years in mental health and learning disabilities…
    Typical supermarket conversation –
    ‘MUMMY, WHY IS THAT MAN IN A WHEEL CHAIR?!’
    ‘Shh, don’t make personal comments, it can be hurtful’
    ‘BUT WHY’
    ‘Shhh’
    ‘Ok Mummy. But why is he in a wheel chair?’
    ‘I don’t know dear. Some people can’t walk so they use a wheel chair to get around’
    ‘If I lost my legs under a bus would I have to use a wheel chair?’
    ‘maybe’
    ‘I don’t want to use a wheel chair, I want to ride a robo horse’
    etc etc..

  15. 10th May 2010 / 10:40 pm

    I have a son with aspergers and a daughter with cerebral palsy. My son looks like everyone else, he just has public ‘meltdowns’ and I haven’t successfully dealt with this apart from putting my head down. My daughter is a real cutie and children regularly ask about her. I just say that she can’t walk or talk (yet) cos she was born too soon and that seems to satisfy most of them. I think it’s so good that so many families bring their children with special needs everywhere with them now. That surely is the best way to make disability a normal part of everyone’s experience.

  16. Abby
    10th May 2010 / 11:07 pm

    My kids are fortunate in that they have a special school right next door to their school and the schools share the swimming pool and sports facilities. This means they see the children who attend on a daily basis and to them it is just part of life. If questions come up I try to answer truthfully with what I know about why they might be in a wheelchair or “making funny noises” or whatever. We have also talked about not pointing, making loud comment or staring as it is rude and you wouldn’t want to hurt somebody’s feelings. I want my kids to understand that people are all different and that not everyone is the same as you. I would like my kids to be accepting of others and not judgmental (I’m not just talking about disability here) and I think the main way to do this is to lead by example and to be open and honest.

  17. 10th May 2010 / 11:16 pm

    I think you’ve got it spot on, Sally. Children are just curious, it’s the adults that can have attitude problems – look at the complaints when CBeebies introduced a disabled presenter.
    My brother hated being in a wheelchair, so much so that he preferred to ride in a large pushchair. He was a small lad and pretended to be younger than he was. He always preferred it if a child asked him why he was still in a pushchair, he could tell them that he had a problem with his lungs and that he got puffed out if he walked. Adults tended to stare and then give us a wide berth. It’s the whole ‘does he take sugar’ thing.
    It’s a lovely photo BTW x

  18. 11th May 2010 / 1:43 am

    My husband grew up with a mum wwho was a teacher is a speical needs school and did respite care for disabled children, so he like you doesnt see them as unusual, different yes, but it and they were part of everyday life to him. We try and work along the same lines as you and hope that the boys will understand and be understanding

  19. 11th May 2010 / 8:30 am

    My family was involved in an organisation called Inskip, which provided entertainment and activities for many years, before being disbanded 5 years ago. From being babies my sister and I were introduced to people with a whole load of learning and physical disabilities, from Aspergers and Downs Syndrome to people with lost limbs and brain damage. To us, disability has never been an issue because my parents were always open and honest with us. They never told us to shh or not to say that because it wasn’t nice. We were encouraged to speak to the person and ask why they were in a wheelchair or had no arms. Of course times are very different now & I would be reluctant to do that to Sam unless they looked very nice!
    Ceri on Cbeebies was fantastic because it showed children people come in all different shapes and sizes. Some have all their limbs, some don’t. It’s just one of those things and no big deal.
    I dread to think how the children of those people who complained she was giving their children nightmares are being brought up.

  20. 11th May 2010 / 8:33 am

    By the way, I would like to point out that people didn’t mind us asking why they were in a wheelchair or had burns, they prefered it to parents ushering their children away.

  21. Insomniac Mummy
    11th May 2010 / 10:54 am

    I think you’re doing exactly the right thing.
    I don’t hurry kids away from certain situations or people and Ethan has never questioned (as yet) why anyone was ‘different’. He just sees the world through his fresh young eyes and accepts everyone the way they are. We’re all different, in many ways and I hope I can explain it properly when he does begin to question things more.

  22. 11th May 2010 / 10:04 am

    My sister has a mostly invisible disability (at first sight) which makes disability an easier thing to talk about, I suppose.

  23. 11th May 2010 / 10:07 am

    Our neighbours growing up had a severely disabled daughter back in the day she was called ‘spastic’ – we were both families of five children and their daughter was about six moths younger than me. I was aware that she needed help eating etc but effectively we just got on with it and muddled along – by the time we sat around to eat there were at least ten children and six adults – it was kind of a zoo but a good way to accept children come in all shapes and sizes.
    There is a boy in my son’s school who has a ‘robot ear’ I don’t exactly know what he has I suspect a hearing aid – they all think it is state of the art kit. I also remember meeting a disabled man in Hyde Park who had a really cool wheelchair that could go up and down stairs – my sons were very impressed and chatted away to him about its’ various capabilities – they broke the ice far more easily than an awkward adult. Great post thanks.

  24. 11th May 2010 / 10:25 am

    I totally agree with the idea of not shielding children, I think. But it is tough to get the balance right, too – I don’t want to make anybody else feel uncomfortable either. I like the idea of teaching children about not loudly making personal comments about anyone.

  25. 11th May 2010 / 10:30 am

    Oh, you can always rely on kids to find the surreal question in any given situation can’t you!

  26. 11th May 2010 / 10:35 am

    Yes, we used to have a great nursery in Brighton which was totally integrated with hearing and non-hearing kids – perfect in letting everyone pick up sign language and also introducing children to disability as a normal experience.

  27. 11th May 2010 / 10:36 am

    I do completely agree. Although I must confess that once a small child asked why my tummy was round and I said it was because I liked to eat small children.

  28. 11th May 2010 / 10:37 am

    I cannot actually believe people complained about that CBeebies thing. “Disabled people give my children nightmares” WTF????

  29. 11th May 2010 / 10:37 am

    I’m inclined to agree it’s usually the better of those two options.

  30. 11th May 2010 / 10:38 am

    Maybe a cochlear implant? Although a “robot ear” sounds so much cooler!

  31. 11th May 2010 / 11:24 am

    As Trefusis Minor said when he was three, ‘Everyone’s different in their own way, Mummy’. Lovely post, thank you xx

  32. 11th May 2010 / 2:26 pm

    I’ve always thought honesty is the best policy and I think you have it spot on! Our Meg is Epileptic and had a seizure at school once, the kids were more concerned that she was okay than about what had happened. We sent a book in to school for the teacher to share with the kids.
    It’s always been easy explaining other disabilities to Meg or her disability to others, but it was hard explaining to Meg that she was epileptic.
    We told her that it doesn’t define who she is, it’s just something she lives with. She’s no different than any other kid, she can do anything she puts her mind to, the skies the limit! There are just some situations where she has to be a little more cautious than others and as long as she’s smart about it she can do anything.
    I find kids to be very accepting, it’s the parents that sometimes aren’t. Education is key! Believe it or not there are still parents who think you can catch a disability or that their child will be less smart for being around a child with a disability. Nothing is farther from the truth.
    Anyway I’m rambling on. lol My advice… Be honest and teach your kids to treat a child or adult with disabilities just like you would treat anyone else. Educate your kids and let them ask questions! Most kids or adults with disabilities are used to it and don’t mind sharing. We find the more our friends and family know about epilepsy the safer our Meg is when we’re not around. Great topic!

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