Clicking in the gallery

We took the kids to Tate Britain at the weekend. It’s a good thing to do first thing on a Sunday morning – we can drive there easily, it’s not busy, and we can get coffee and pastries in the café which incentivises the whole trip for all of us.

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It was the last day of the Turner Prize exhibition so I had a chat with a guy at the front desk about whether it was suitable for children. I mentioned nudity, and he started talking through whether there were naked people in any of the pieces. I had to clarify that nudity wasn’t the problem, it was what the potentially nude people were doing, since I’d accidentally once walked Sam into a room of Gilbert & George works which were utterly inappropriate. Oh, no, no sex, he said.

And he was right, no sex. But the four nominees for the Turner Prize had all presented video works, two of which were about people who were being or had been killed. Of the other two, we all enjoyed some of a film about the legacy of colonialism in Tripoli. Yes, really. It was beautiful and interesting, and Stella only asked to leave four times.

Video art is perfect for Sam. He is drawn to screens, and these screens were huge. Each artist’s room had just one bench and people came and went so it was easy to manoeuvre Sam’s wheelchair in and out.

James took Sam into a film about queerness and Scotland which seemed safe for kids. For most of the time it was silent, with sweeping footage of ancient standing stones in remote Scottish islands. The other visitors were sitting silently and Sam was engrossed. The only noise was the rhythmical clicks of Sam’s tongue.

Sam has dystonia, which means he has involuntary movements in his muscles. It makes it very hard for him to control his own movements which affects his ability to sit, walk and talk. It also affects the way his tongue works, in that it moves a lot but not in a way that makes eating possible. This means Sam doesn’t control his saliva, and he makes a clicking noise sometimes as he moves his tongue within his mouth.

When he was first at nursery the staff would call him “Dolphin Boy”, for the little clicks he would make throughout the day, like he was trying to communicate on some level unintelligible to mere humans. He would make the sound when he was relaxed or interested in something – never when he was stressed or uncomfortable, when his mouth would be tense. He would often click when he was lying in bed, or when we were hanging out at home and he was content. Over the years he has done it less.

When Sam was younger we were self-conscious about him making noises, particularly in very quiet places. For a child who doesn’t talk, Sam can be quite noisy. He often kicks which makes his wheelchair squeak, or makes noises to complain, or shrieks if he is excited. It doesn’t matter if you’re in open, noisy areas but in silent galleries (or cinemas, restaurants, planetariums, theatres) the noises can seem loud and potentially disruptive. I would hate the idea of other people being bothered by the noise. I’m the kind of person who would rather not eat sweets than risk making loud crackles with a packet of fruit pastilles in a cinema.

Over the years we have come to notice or care about this less and less. If Sam is making a lot of noise he is often not enjoying himself, and we will take him somewhere else, out of the theatre. But if he’s making noise while enjoying something, then so be it. Sam is often the one laughing loudest and longest at something funny at the cinema, but he may also be making some noise in the quiet bits. If someone else is bothered by a disabled child making some noise, then I don’t really care. Odds are they could visit again, whereas outings for us are logistical challenges. I think expecting one mode of behaviour from all humans in every public space is, when you start to think about it, ridiculous. And actually, much of my anxiety about disrupting other people with our family’s noise is (was) presumptive – I imagine people are annoyed, when the vast majority of people either haven’t heard it, or have but are relaxed about it. We meet lots of people who are friendly to us in these situations, even when we’re blocking their exit from the row with Sam’s wheelchair and the four hundred bags we like to carry with us at any one time.

Still, it’s one thing to intellectually decide that it’s okay for Sam to make his noises in places where they might draw attention, but it can be another to not feel a twinge of anxiety about it. Over time, I’ve come to marry the two. I hear the noises themselves less, I’m less likely to see whether other people have noticed, and I care less about all of it.

In the dark room at Tate, James said no-one turned towards the noise as he, Sam and a group of strangers watched sweeping Scottish scenery accompanied by the rhythmical clicks of Sam being content. I think that’s kind of wonderful.

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We then rewarded ourselves with croissants and cappuccinos, and then wandered through the main galleries of Tate looking at art back through the centuries. Somewhere towards the sixteenth century Stella took her shoes off and tried to jump off the benches, before shouting that she wanted to run. I tried to tame her while James talked to the boys about paintings of men on horses, and paintings of men fighting.

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Stella’s just turned three, and it’s an ‘interesting’ age. During our trip to Tate our disabled child was at no point the one that we were self-conscious about, that we were noticing people’s reactions to, or worrying whether his behaviour was appropriate for the space. Partly because I think the noises Sam makes are largely appropriate to all spaces, but also because no-one notices him when a small but furious girl is careering towards art of national importance, tripping people up as she goes. There’s a moral in there somewhere, beyond the immediate lesson that one way to distract yourself from overthinking your disabled child is to take a three year old whirlwind with you wherever you go.

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Looking for Alice

I love art and have, for a long time, spent as much of my time as possible visiting galleries, looking at sculpture, paintings, photographs. These days I am as likely to use my Tate membership to take a small child to the members café as I am to appreciate an exhibition, but recently I discovered a new (to me) photographer. I had that thrill of connecting with her pictures in a way that made me feel like today had been a good day, that the time I had spent looking at those pictures had improved the quality of my life.

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That photographer is Sian Davey and the book I discovered is ‘Looking for Alice’, a collection of photographs of her daughter. Alice was born with Down’s Syndrome and Davey’s project has been to photograph her daughter as she accommodated the shock of a baby who was different to her other children, and fell in love. Alice is the same age as Sam.

These photographs are beautiful. If you knew nothing of the intent of the photographer, did not know that a mother was holding the camera and that the girl was her daughter, you would find them to be stunning images. They are part of a photographic tradition of focussing on the domestic, of examining what is in front of you.

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If, like me, you read Davey’s essay accompanying the photographs, you would hear her voice:

‘This is a story about love and what gets in the way. This concerns all of us, my daughter’s diagnosis is only one aspect of it. The rest is about yours and mine and indeed society’s relationship with ‘difference’ of all kinds – this is what Alice is inviting us to reflect on.’

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I can’t help but believe the personal to be political. I don’t think you can be the mother (or indeed parent) of a child who is ‘different’ and not politicise the way you see the world around you – from the way people are treated, included or not, to the effects of social policy, education and healthcare. I have come to realise that much of the prejudice and problems experienced by disabled children and adults come from fear and ignorance of individuals, society and the state. It is easy to think of some people as different if they look different (or behave differently) to how you perceive a child or adult should look and be. This inevitably leads to thinking it is okay to treat them differently.

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Davey is explicit about the fear and uncertainty she felt after Alice was born, and how these feelings dissipated as her love grew. I can’t believe that anyone could look at the photographs of Alice and not see that she is a girl who, as her mother describes, has the same needs and feelings as any other child. It is also blindingly clear that she is a loved member of her family, not least because one cannot ignore the fond gaze of the camera.

Sometimes I feel like a member of an invisible club – one of parents diligently and quietly learning from their ‘different’, often disabled, children and using their children to try and change the world in ways big and small. It is an unashamedly domestic beginning for a political movement, and I am only one of the latest in a long line of mothers and fathers trying to make the world a better place for their children. Because surely our society is only as good as the way we treat those without advantage and privilege.

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Families are messy, imperfect things, constantly shifting and adapting yet consistent and supportive. For us, and many others, our family is where disability is the norm rather than the exception and is just part of the mix. How wonderful it would be if we felt that was the case beyond our front door.

As Davey writes

‘(Alice) is now in the middle of everything that we do as a family, and is loved unconditionally, as it should be. I can’t help but wonder how it might be for Alice to be always valued everywhere, without distinction, without exception, without a second glance.’

There’s nothing to be afraid of. Alice, and Sam, are just (small) people. There is much to value.

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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