I’ve always liked the bit of time between Christmas and New Year. When I was young it was full of adventures with friends, TV, and leftover Christmas chocolate. Come to think of it, these are precisely the reasons why I still love it.
Today my support worker, Anna, and I went into town. Because we weren’t in any hurry we took our chances with the buses rather than getting a cab. Travelling around London by bus is great, but as a wheelchair user it’s also often incredibly stressful and unreliable, I use buses much less than I used to as a result.
When it comes to Tourettes, they’ve been where I’ve had some of my most interesting conversations, but also some of my most challenging and upsetting reactions. On the whole, now I use a chair to get around, I’m finding that negative responses to my tics happen much less frequent than they used to, and my guess is it’s because people understand my tics more easily in the context of a visible disability.
That said, on the bus home this afternoon I had an experience that felt all too familiar – but my feelings about it afterwards felt noticeably different.
There was a group of teenage girls on the bus, chatting excitedly to each other, looking at their phones and taking selfies.
I was suddenly aware they’d gone quiet, and clearly it was because they’d noticed my tics. Most of them soon stopped looking at me and got on with what they’d been doing before, but one of them got the giggles. She couldn’t stop cackling – I could see her trying to make herself stop, but every time I ticced there’d be another a burst of laughter.
Her friends seemed a little embarrassed by her behaviour and didn’t engage with it too much, at least not until one of them began filming her as she pretended to punch herself in the chest, mimicking my movements.
I was too far away from the group to challenge them easily until they got up to get off. As they were leaving the bus I wished them all a Happy New Year. The young woman who’d been laughing looked shocked to see me speak and sheepishly wished me the same in return.
In the past this sort of experience might’ve left me feeling upset or angry. Today though, my overwhelming emotion was of sadness for the young woman who’d been laughing. Sad that she’d clearly had very little exposure to different brains, bodies or perspectives.