Invisible Disability 2

R’s new wheelchair has arrived.  R’s colour choices (pink and orange) turned out great and the chair looks very cute.  R is very pleased with it.

R’s recent poor run of health has meant that I have been using the chair perhaps more than I would have expected. And I have made a curious discovery.  People are much nicer to us with R in the chair than than they were before.

Funnily enough, by and large, I hadn’t really noticed that people weren’t always being nice. It’s true that the week before the wheelchair arrived, I was out with R in her buggy, when a man stopped me to tell me that she was far too big to be in one.  It’s also true that there were always those people who tutted and stared when R was being noisy in public places.

But most people weren’t like that.  It’s just that, incredible as it seems, they apparently didn’t recognise R’s disability.  Introduce a wheelchair and people smile and chat to R, they hold open doors and offer help.  Introduce a wheelchair and there are no raised eyebrows when we park in a disabled parking space or use the disabled toilets.  It’s almost like the wheelchair is needed to validate R’s disability.

I met a couple of friends, M and J, in the supermarket cafe right next to R’s school before I picked her up this afternoon.  I discussed this shift in behaviour with my friends (who, like me, are mums to daughters with disabilities). “People are less aware of the presentation of disability than they should be.  Disability just isn’t as visible in the community as it should be.”  As I ranted, J watched a scene play out behind me.  A woman entered the cafe with a small boy.  The boy was agitated and crying when he arrived.  The woman set about calming him down and then together they quietly ate a snack.  On the table the woman had set up a card.  The card said that they were from the nursery attached to R’s school, that this was a “social snack time” and that if anyone wanted to ask about what they were doing they could.  And no-one in the cafe fussed and no-one in the cafe tutted.  What a brilliant way to raise awareness.

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6 thoughts on “Invisible Disability 2

  1. I always look forward to your blogs – so inspiring, realistic and eloquent!
    Our daughter with Rett Syndrome is nearly 12 and has outgrown her wonderful MacLaren special needs push chair. R’s new wheelchair sounds great! Would you be able to send me the make/supplier? We’re English but living in Switzerland and struggle finding special needs’ equipment (believe it or not!!).
    Many thanks and warm wishes,
    Joanna

    • Thank you, Joanna. Your comment just made made my day!
      R’s wheelchair is this one:http://www.bettermobility.co.uk/catalog/product.php?CI_ID=785. It’s very much a wheelchair and in many ways is the wheelchair equivalent of NHS Spectacles (if you are old enough to remember those). What makes it cute is the customisation, which includes spoke guards, and which, unusually, our NHS board does fund. R’s spoke guards are orange with white daisies and look great. The Invacare website says that it’s light but compared to the MacLaren Major Buggy, it’s extremely heavy (and enormous).
      If I had the money, I would love to get R one of these:http://reha.bogetec.de

  2. I recently tested a wonderful gent with severe pain and nerve damage who was determined to stay mobile. He would use his sticks to get around town but, for bad days, he would use a wheelchair. One of his neighbours called to report him as a benefits cheat because she felt he wasn’t using his chair enough.

  3. This reminds me of when, a few years ago, R had her DLA withdrawn. The decision turned on a single statement in her school report (requested by the DWP) that said she “participated in a dance group”. The dance group is called “reels on wheels”.

    • It’s disgusting that they can remove DLA without a proper investigation.

      When I spoke to the gent with nerve damage, I mentioned an experience that I had 12 years ago, when I’d just recently slipped a disc and I was new to walking with a stick.

      I was sitting on a bus, right at the front, when a spry older woman (maybe in her 70s) got on with a load of shopping bags. She then shouted at me for sitting in the front seat of the bus and then not standing to give it up to her. She had me in tears before she muttered her way to the empty seats a few rows down, calling me for everything (loud enough for me to hear). I was one of my lowest points from that period of time. I was also shocked that no-one said anything to her even though they’d seen me struggle onto the bus only a short while before.

      Apparently the general public are experts at spotting when people aren’t disabled and they aren’t shy about sharing their opinions.

  4. Oh, the world is full of medical professionals who can diagnose you from three minutes of staring. TRUTH. I have a handicapped parking sticker for various health issues, not all of which are readily apparent, and I get accosted by Angry Old Men all the time, demanding to know if I’m “really disabled.” EFF YOU. I always reply politely, “Sir, with all due respect, you know nothing about me, and my guess is you wouldn’t trade places with me physically for a million dollars.” Usually embarrasses them enough that they get off my back. I think it’s unconscionable that anyone does this to moms with kids, though. Unbelievable. Ugh. Stay strong!

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