Monday, 4 February 2013

Just one thing.

Disability awareness at Guides tonight. Miss Mog missed it, but her two schoolmates turned up with wheelchairs to assess accessibility. Various girls turned up with info gleaned from variously disabled siblings, we turned egg cartons into beginner brailers, had feely things and see-y things and chocolatey things (because everything can fit chocolate). We had miming, and signing, and exercises in tearing paper to show how different we are and yet how alike. And we borrowed Mog's communication switches.

And then we challenged the girls to think about what they'd choose to say, if they had to be limited to just one message on a switch as their only voice.

Some of them had instant answers. "Help me I can't talk" seemed to be a fairly common instant response - until I asked them what they needed help with, and they realised they couldn't say. Several girls went for something along the lines of "Hello", and one of the leaders decided on "Thank you."

A few chose specific messages, ones which they realised wouldn't be needed all the time, but which they thought would be the most important thing they'd need to communicate. "I'm hungry" and "I need the toilet" seemed to have equal place there.

A couple of the girls who are used to switches decided recording music or family activities would be the most important thing; linking home to wherever else you might be going, and using the switch to share news without words; a conversation starter rather than a set phrase.

And one Guide who has difficulty with words at times decided she needed a switch with "Mummy!" recorded on it. Which made me think, because I'm not sure that's an option we've ever offered Imi, and yet how many children do end up stuck on a "Mummy mummy mummy" loop for a while?

Mog's switch says "I've got something to say" - although none of the girls could hear that message. She has a new switch coming very soon. We use her switch as a springboard; she gets our attention and then her talking book has far more possibilities for her than anything accessible via single switch would give. And we've stayed with that message, knowing it works, but perhaps not really thinking about the alternatives.

The Guides have made me think. So I'm passing the challenge over to you. If you could only say one thing, what would you choose to say?


R said...

Ooo! I think I'd go along Mog's lines and ask for eyegaze board or other means to communicate further - back a couple of years ago when I had an unusually long spell of difficulty speaking the district nurses developed a horrific habit of demanding that I answer questions only with 'yes' or 'no' signs because spelling anything else out was so slow. They thought they were helping; it was one of the most frightening, disempowering and infuriating things I've ever experienced.

If eyegaze board or other more-words equipment not an option I think I'd ask for whoever was best at doing the '20 questions' thing with me - my PA, Phoebe. Bit like the 'mummy' option there, I suspect.

PS offer Imi the 'mummy' on switch option... but make sure that "change my switch message back to..." and range of options is agreed and in the talking book first!

Anonymous said...

"Thank you for being with me" would be one I would go for, I think. Having said that, it doesn't seem to be the most useful phrase for everyday life.

Alesha said...

Well, I have to say that I probably wouldn't be as polite as Mog, but my message would be quite similar to hers. I think it would be...

"Listen To Me! I have something to say."

I'm afraid my frustration level would need that extra exclamation point.

Really good thoughts, Tia.



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