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My Legs Don’t Work

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Child: “Mummy, why is she in a wheelchair?”my legs dont work Parent: “Sssshhh” Child: “But Mummy why is she in a wheelchair?” Parent: “SSSSHHH! It’s rude to point and stare!” Child:”But Mumm……” Emily: “It’s because my legs don’t work properly” Child: “Ohhhhh!”

Has this happened to you? It happens to us all the time. No one want’s to stare or ask questions. But why? Isn’t it natural to wonder and ask questions about the world?

What about this one?

“What’s wrong with your child?” “Nothing” Why do people assume there is something wrong? My daughter doesn’t feel wrong, so why should she be? She has a difference. We are all different.

Emily and I agree that education is needed, and it’s up to us to talk about it and explain so that children understand our differences. They aren’t being rude, it maybe the first time they have seen any disabled person, especially a disabled child. Once the question is asked and explained, the barrier is broken and the subject can move on. It’s also a good way to make to friends. If we didn’t cross these barriers, then this is where the prejudice starts.

I don’t mean that every time, you should explain to everyone exactly about child’s condition and the ins and outs of their bowel movements. If Emily gets asked a question that she doesn’t want to answer, she says “It’s complicated”.

“Aaahh, I’m sorry”

Other comments we get are “aaahh, poor child, I’m sorry” Why be sorry? I’m not. Why is having a wheelchair such a terrible thing? The wheelchair doesn’t make her disabled, it makes her enabled! She can move, she is free. She is not “wheelchair bound” we didn’t chain her to the chair, she loves her chair. Yes she uses it full time, and she depends on it, she is wheelchair dependent. But no way is she bound. She is however bound to be in it, whenever you see Emily, you are bound to see her chair. It doesn’t help that nearly every time you see a disabled child on TV, it’s accompanied by sad piano music, and a voice over telling viewers how sad life is with a disability.

My husband Dan, is already challenging these perceptions by creating the Department Of Ability

If you haven’t heard about it yet, it’s a group of superheroes, all with disabilities, saving the world.

Let me know what you think in the comments below.

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16 thoughts on “My Legs Don’t Work

  1. My child has autism. Because it is a hidden disability, people often give me or her awful looks. Or think I’m just giving in to her when she won’t do something a ‘normal child might does. I’m being a soft parent because atm my daughter is only going to school for 1.5 hours a day, because she can’t handle the environment, and I can’t handle having to physically hold her in the door whilst I run, hoping she doesn’t run out into the road after me. I almost find myself at the opposite end of the questions…I want people to ask questions so they know the difficulties we face everyday, and I don’t just get judged as a soft parent!
    Rowena

    1. Hi Rowena,
      It’s great to hear from a different perspective of someone with a child with a hidden disability. It would be great if we were truly inclusive as a society, and educated to accept people no matter what.

      1. That would be amazing!! We are so judgemental as a society. Mothers get judged right from pregnancy. It’s so sad!

  2. This is just how we feel about the wheelchairs. ‘Wheelchair bound’ is also my pet hate!
    The other thing I smile to myself about is when people ask me how Nathan & Cerys are & I reply “fine”. I then get the look that says they can’t possibly be fine – they are disabled! But their not ill, so they are fine!

  3. Zoe and I think they are staring because they want a go in her powerchair. Which is pretty cool and very fast.

    I honestly think some of the comments are due to a generation thing. Children don’t tend to ask what’s wrong with someone in a wheelchair, they ask why they’ve got *that* (and maybe why they haven’t got one?) It’s usually older people who use phrases like “wheelchair bound”. It wasn’t so long ago that people with disabilities were stuck in institutions and I guess it must take a fair bit of adjustment to get their heads around the fear of these different people who are all around us now.

    1. It is difficult I agree. Things have progressed forwards from 20 years ago. We are making steps, I just wish that they were larger.

  4. As a family, every time we go to a public place a child will stare and ask questions about my son who has microthalmia among other disabilities. They say” why has he got weird eyes?”. I know it’s good to ask but I just wish we could go out without someone asking as it upsets my daughter so much. To the point where she doesn’t want to go out. She is 10.

      1. I totally agree, I am an adult who uses a wheelchair full time following an illness 10 years ago. My sons were 7 and 9 then and didn’t tend to notice other people’s responses but now the younger one is 17 and won’t come out with me, not because he doesn’t want to be with me but because he can’t stand people’s stares and worst still their comments.

  5. I’m waiting for this one but haven’t got it yet. My plan is to answer ‘what’s wrong with him?’ With ‘he’s very strong willed, what’s wrong with you/yours’. Once he’s old enough he can think up his own weakness. Obvs not when a kid is asking mind…

    1. Yes I agree Lucie, it’s always better to be prepared, shame we have to be but we do in order to stay confident about having a disability, rather than feeling that it’s a negative. Aimee

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