July is disability pride month. I have a difficult relationship with the word disability.

When I first fell ill, nearly 12 years ago, I thought it was temporary. So although it hugely impacted my day-to-day functioning, I didn’t feel disabled. I was an abled person who had a virus. Then, slowly, it became clear that it wasn’t going away. Still, I wasn’t confident calling myself disabled. I began using other words to describe myself- I was chronically ill, or a ‘spoonie’ (if you don’t know what a spoonie is, check out this post). But I still wouldn’t call myself disabled.

Partly, this was down to my prejudices about what it meant to be disabled. A disabled person was someone who used a wheelchair, or had lost a limb. Or an elderly person, perhaps, who walked with a cane. I was young, and still looked ‘well’. So I couldn’t be disabled…

Partly it was my internalised ablism. Although I didn’t realise it at the time, looking back, I didn’t want to admit I was disabled. Disabled was a BIG deal, a bad thing, and I didn’t want to make a fuss. I was ok- I could manage my symptoms, I wasn’t affected enough to be disabled.

Now, of course, this seems ridiculous. There were so many things I was unable to do. My illness affected every aspect of my life (and still does, though to a lesser extent now). By not accepting the label I was making life harder for myself, by not allowing myself access to accommodations that could make a huge difference in my quality of life.

A case in point: it took me 8 years of attending Reading Festival, and spending most of the days sitting in a camping chair we brought in, looking at people’s backs, to allow myself access to the platforms they have in every tent, for disabled people to use.

In 2017 Reading Festival achieved ‘disability gold’ status for its access to live music. (Pic: BBC)

And even then, I’m not sure I would have thought to ask if we hadn’t been forced to contact the access team when they banned camping chairs from the arena. But it changed my experience of the festival so much, being able to see the bands, and feeling safe, protected from the drunk people usually falling over my chair! I wish I’d asked for it sooner, rather than assuming the platforms were only for wheelchair users, and that I wasn’t ‘disabled enough’ to qualify.

In the last few years, I have begun to accept that disabled is part of my identity, and that it probably will be for a long time. And that’s ok. I’m happy that I’m finally able to admit that sometimes I need help, and that these little adjustments can really make a big difference to the quality of my experience.

Am I proud to be disabled? That’s a harder question. I often wish for a cure for M.E., so maybe that means I’m not a proud disabled person. Or maybe it just means I would prefer a life without pain and fatigue. But I am definitely proud to belong to the amazing community of disabled people I have found online. It is a community full of empathy, love and understanding. Full of acceptance, where people with all sorts of disabilities are welcomed and made to feel worthy. Where people fight for each other’s rights, as well as their own individual access needs. Where humans are seen to have inherent worth, not determined by their productivity.

Particularly at the moment, when it seems the government, and large swathes of the population see disabled people as expendable, unimportant because they are ‘vulnerable’, I am so proud of us for standing up for each other, and being there to let every member of our community know they are valuable. That their lives matter more than the economy. And that their safety is more important than the slight inconvenience of having to wear a mask. I think there is a lot that non-disabled people can learn from the way this diverse and varied group of people treat each other. And that makes me proud to be disabled.

Ginny Smith is a science presenter and writer. A Natural Sciences and Psychology graduate of Cambridge, Ginny performs science shows all over the world and presents a wide range of science content for the likes of the Cosmic Shambles Network and the Naked Scientists. She is the co-author of three DK Publishing books looking at science, food and the human body. Her frist solo book, Overloaded is out in April 2021. She is @GinnySmithSci on Twitter.

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