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.
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.
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.
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.