On the way back from Shambala yesterday we stopped for a couple of breaks at motorway service stations. My wheelchair had been dismantled to fit into the very full car, so at both stops I was on my feet instead of my wheels.
I’d made sure I had my big snowboarding boots with me because they make it easier to walk, but even so I’m still very wobbly and need someone to support me on either side. Walking about was exhausting but uneventful, though Poppy did say ‘Wow, I remember why we don’t do this any more.’
But being out and about in public without my wheelchair reminded me of something else – what it feels like to be constantly stared at. Obviously strangers do look sometimes when I’m using my wheelchair but nowhere near as much as when I’m not.
I suspected when I put my boots on that I’d soon be seeing lingering, disapproving and shocked looks and quite possibly hearing some laughter too. It turns out I was right. Reactions such as these used to be my constant companions when I was out in public, but since I started using a wheelchair they’ve become a lot less frequent, and I’ve thought about them less as a result.
My tics don’t change when I’m using my chair – they don’t suddenly become quieter, less rude or less funny. But my wheelchair is a visible and easy-to-understand indication that I have a disability so people tend to react very differently. When I’m using my chair people seem to reframe my tics as part of my disability rather than seeing them as terrifyingly unusual and fair game for mockery or laughter. When I’m using my wheelchair I’m generally treated with kindness and understanding, something that didn’t always happen when I was able to walk.
The thing is though, I’m actually less disabled when I’m using my wheelchair. I use it because it helps me move about more easily, more safely and more independently. Conversely, I need much more support, understanding and assistance when I haven’t got my chair, but in fact I get much less.
This is something that needs to change and understanding of disability needs to broaden, especially because an estimated 70% of disabled people in the UK have a hidden disability. This includes conditions like arthritis, autism, diabetes, epilepsy, or multiple sclerosis.
My own disability isn’t hidden at all and my tics are very evident all the time. What’s interesting is how they seem to become less visible or at least attract less negative reactions when I’m using my wheelchair. Public understanding of disability and what it looks like still seems quite stereotyped and this is just as big a barrier to inclusion as a lack of ramps, lifts or hearing loops.
As we drove back through London yesterday I reflected on all this. I thought about how little my tics had changed in the last few years but how different my experiences in public had become. This isn’t just because of the wheelchair, it’s also because I no longer go anywhere by myself. These two factors have meant it’s been a while since I had a really distressing or unpleasant experience in public, and I know that my confidence about going out and doing things has increased as a result.
It’s sad that this seems to be because I’ve become more instantly recognisable as ‘disabled’ and not because public understanding of disability has improved. I know that as soon as I leave my chair in the car, or transfer into a seat in a restaurant or a train, my experience will almost certainly revert back to the old edgy one felt by many people with Tourettes and other disabilities that make them stand out.
We all need to think carefully before making assumptions or judgements and not be like the people who say, ‘You look fine to me’ to someone who’s describing their hidden disability.
We need to make sure we have a broad understanding of what disability means, that we challenge stereotypes and pass the message on to other people.
Parents need to be especially careful about the way they explain difference and disability to their children. If they get it right we’ll soon have a generation who don’t need to see crutches, wheelchairs or white sticks before they show understanding and empathy.