The temptation to interrupt

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If you have a child who doesn’t follow the typical path it’s difficult to have a sense of where they will end up. I don’t mind this too much; I don’t find it that useful to have conversations about what Sam may, or may not, be doing in ten years time.

But everyone looks for role models for themselves or their kids, and some sense of where the path might be going. Disabled adults are rarely found in mainstream media, so I was lucky recently to be at a study day where a panel of five Alternative and Augmentative Communication (AAC) users answered questions from the audience using high tech devices. Three of the five used eyegaze, exactly like Sam is learning to. There is a video here.

It is important, and inspiring (not in an inspiration-porn kind of way) to see people using AAC to talk so eloquently. THAT is where we want to aim for.

But I was really struck by something that one of the panellists – Kate Caryer – said at the event: she pointed out that people sometimes think of a communication aid as a gift or a toy, that users should feel grateful their local authorities have provided. Whereas it is in fact a human right.

Respecting Sam’s right to communicate means his device needs to be there, in front of him, as much as possible, not just when we decide we can fit it into his daily life. We need to make sure the batteries are charged, and the mounting arm is ready when it is needed. We need to force ourselves to fit it even when it feels like a bit too much effort on a busy day.

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But more profoundly, we have to be ready to hear what is being communicated. We have to alter our own culturally-constructed notion of how conversations work.

I find it uncomfortable to leave gaps in conversation – I feel I have to fill them. I first realised this when we lived in the Middle East and would spend time with Syrian friends who were happy to sit companionably with long pauses in conversation. I had to teach myself to enjoy this time and not fill the gaps with mindless waffle. This was made easier by my rudimentary Arabic.

Someone using a communication aid to talk is probably going to take longer, more time than a typical talking person. At the study day, it took time for the five individuals there to answer questions from the audience: they need to hear the question, navigate (with eyes or fingers) around their communication device to find the vocabulary for what they want to say, and then speak it.

This often makes conversation with an AAC user slower than we are used to, and I for one need to force myself to accept that rhythm of speech. This means waiting the extra 30 seconds to see what your conversational partner wants to say, and not interrupting. Sam isn’t able to shout immediately, in the way that Eli does frequently, ‘Mummy, I was actually in the middle of talking when you interrupted me!’

I frequently screw up even when I am trying my best. I realised recently that after a conversation with a woman who uses a communication aid, I had said goodbye and walked away. I hadn’t waited to see if she wanted to say goodbye, or even if she had anything else to say. I felt a little sting of shame when I later realised. We can all have good intentions, but we don’t always behave as well as we’d like.

If you manage to fully embrace the alternative pace, there are rich rewards. A few years ago when Sam was just learning to look at Yes and No symbols on the armrests of his wheelchair to answer questions, we went to a local park and met some friends. One of them, who happens to be a nurse, crouched down in front of Sam so she was at his level, asked Sam if he was enjoying his new school, and then waited.

Sam slowly and deliberately looked down at the Yes symbol. It was the first time he had totally independently answered a question from a stranger, and it happened because she asked the question in the right way for him.

If we accept that people with communication difficulties have a right to talk – and therefore to be given the support, equipment and training they need – then they also have the right to be heard. And we, the people taking our communication skills for granted, have to learn how to listen. Not make assumptions about what is being said, or interrup, or fill the gaps in conversation with inconsequential waffle, but actually listen.

I mean it’s a good tip for life generally – many marriages could benefit from partners actually listening to what each other are saying. But rather than forcing the AAC user to navigate their way through their devices to say ‘Stop interrupting me’, maybe we should just take it upon ourselves to get our own houses in order.

 

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Broadening Horizons

When I was doing my post-graduate diploma to become an architect, I studied at a very well-respected university in London. Through a complicated, confusing process of admissions, I ended up in a teaching unit with two eccentric tutors. They dedicated themselves to broadening the horizons of their students as widely as possible, the manifestation of which was to teach us as little as possible about buildings while having long (and occasionally unintelligible) conversations about cybernetics, pataphysics and (in the case of my work) weaving.

For me, it wasn’t a hugely successful approach and I didn’t thrive in an environment so self-consciously wacky, but I respect their intention. Life, and particularly professional life, is rarely as varied and fun as one would like so it’s important to broaden horizons before they are narrowed by the requirements of a Local Authority Planning Officer.

I carry this idea in to my parenting. I think the role of any parent is to provide as many possibilities as possible, to raise a child that believes they can do what they want and understands how big and rich the world around them is. Of course I have prejudices and opinions which I can’t help projecting on to my kids – I would like my sons to contribute, I might struggle to rouse enthusiasm for them being bankers – but I mainly want them to feel they have options.

Naturally our aspirations for Sam have adapted a bit to fit his talents. James has had to accept that the already low probability that he’d play international rugby has further decreased. But that’s okay – I have never been hugely keen on the idea of my (inevitably) slight sons being pummelled – we just need to find some alternative possibilities and role-models.

Much of the world is still open to Sam. He can read and spell at an appropriate level for his age so as long as we can facilitate his communication there is no reason that he can’t do all sorts of exciting and interesting things. Once you start to look there are lots of people with profound communication difficulties doing brilliant jobs: Stephen Hawking obviously, the media’s favourite disabled person.

I recently came across the work of Jacqueline Smith – an artist who is physically disabled – through my mum spotting something in a Printmaking magazine. Following some internet detective work, I found the Eye Can Draw project which aimed to establish greater access to printmaking for artists with disabilities in Dundee, Scotland. Amongst other things, they linked eye-gaze technology with graphic software, and then used the drawings to make prints using various printmaking techniques.

Once you think about it, it’s an obvious thing to do. But it hadn’t occurred to me. Sam uses an eyegaze computer to play games; why not encourage him to make art this way?

THIS IS WHAT IT’S ALL ABOUT. These are the people we need to know about. Not just taking Sam to art for kids and hoping/helping him to use his hands, but finding role-models, and their work, which is inspirational in both process and end result.

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I loved Jackie’s prints, and I’m pretty sure I would have liked them even if I hadn’t been so heartened and inspired by her methods of production. She is a talented artist who just happens to make her pictures via some specialist technology, which itself requires skill and expertise to use. It is no surprise to me that Jackie’s work was nominated for the Lumen Prize 2014, for art created digitally.

So I bought one! I pretended to myself that it was a present to Sam. I had a very friendly email exchange with Jackie who was concerned that the scale of the print would be intimidating in a domestic environment, but I can’t think of anything better than eye-catching eye-gaze art. Let’s intimidate ourselves with the positivity of disability.

The print is now framed and yes, it is rather large. I might make it my goal to only buy pictures that are the same size as my children.

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