This morning a friend drew my attention to a twitter thread started by Sam Missingham. Sam is a bit of a publishing industry legend and the founder of Lounge Books amongst a gazillion other things. She’s also a great advocate for under-represented voices in publishing.
Her thread today (which you can see here) was asking about experiences of disability in terms of wider accessibility and also in terms of writing events and publishing. And those are things I think about quite a lot when I’m wearing my Vice-Chair of a major writers’ organisation hat. But they’re also things I think about just as Alison. And just as Alison I started to type a reply, and then I stopped, because even in the modern world of multi-tweet threaded epics I couldn’t martial my thoughts down to a tweetable size. So instead, here I am, blowing cobwebs off the unloved corners of the blogosphere like it’s 2013 or something.
So let’s kick off by outing myself. I’m a disabled person. The most common response I get to that statement is generally in the area of ‘Oh but not like, y’know, really disabled…’ Here’s what the Equalities Act 2010 says a disability is… ‘a physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities.’ So yeah – in those terms really disabled.
Amongst other things, I have IBS – a label I have lots of issues with – which basically means that I have chronic digestive pain and problems caused by nothing that GPs or consultant gastroenterologists can definitively identify. They can definitively rule out lots of things – bowel and stomach cancer, colitis, Chron’s disease, coeliac disease for starters – but can’t definitively rule anything specific in.
I’m not personally a huge fan of the term IBS. It stands for Irritable Bowel Syndrome and I find it sort of creates the image of one’s bowel as a kind of grumpy old man* – a Victor Meldrew figure – bitching and moaning at whatever food happens to get chucked his way. As well as causing pain, IBS can also cause constipation and diarrhea, or, for a lucky few of us, both (sometimes within the same 30 minute period). For me, at least, a more accurate term would be Over-reactive Bowel Syndrome. Everyone’s digestive system reacts to the food we eat – if they didn’t we wouldn’t all share an understanding that beans make you fart – mine just has significantly more dramatic mood swings than most, and sometimes reacts to entirely unexpected things, like ‘it being Tuesday’ for example.
As a result I have to modify my diet – red meat, for example, is pretty much a no no – and I have developed the ability to know where the nearest toilet is to the level of it basically being a superpower. I carry a radar key for disabled toilet access and am getting more brazen (although not fully shameless yet) in the face of the ‘you don’t look disabled’ whispers and glances when I have to use the damn thing. It also makes losing weight a real challenge. Pain levels vary from day to day but on flare-up days, doing exercise is a non-starter. If you can imagine your digestive system as a bottle of fizzy pop and then think about the shaking effect of a vigorous 45 minutes of HIIT or Zumba you’ll get a good idea of the issues there. And on flare-up days the only foods that don’t make things worse generally fall into the ‘beige carbs’ category. Again, not ideal, for maintaining a healthy weight. I get bloating to the point where I’m pretty much guaranteed a seat on the Tube on suspicion of being about seven months pregnant. If I get too hungry I get stomach pain. If I eat even slightly too much I get stomach pain. Sometimes I do everything ‘right’ and I get stomach pain.
The amount of pain varies a lot and, like most chronic illness sufferers, I do a lot of powering through. Because you can, up to a point, but it takes a toll. Powering on through pain is knackering. I have friends who have chronic illnesses where fatigue is a major symptom – I can only imagine that the exponential impact of the fatigue of powering through fatigue must be horrendous.
So that’s me. And now, I’ll try to drag myself back to the point I originally intended to talk about… What would I like to see change in writer world and publishing in relation to disability?
Obviously these are just my personal thoughts…
- Events with multiple food options please… It’s great to be asked about dietary requirements before an event – I have multiple weird food allergies so it’s good to get them down in advance – but realistically a lot of days I don’t know what I’m likely to feel ok about eating until I’m there. Buffets are good. Menus with choices are good. If there’s only one option, staff who are understanding about me leaving half of it are good too.
- Enough toilets… men’s, women’s, gender neutral, disabled – in a pinch I’ll use any of those. It’s just nice when there’s more than one cubicle for the massive room full of people.
- Stop telling stories where disability is a metaphor for the character flaw the protagonist has to get over please… Disabled people can be delightful. Disabled people can be dicks. Most of us are somewhere in between. Like, you know, people. What disability and chronic illness definitely aren’t are flaws to be overcome. Powering through pain isn’t a great personal victory – it’s a choice. Staying in bed isn’t ‘giving in’ to weakness of mind or character. Both of those actions are entirely value and morally neutral.
- Ask disabled people what they want and need… disability is a massive range of stuff. Sensory impairment, mobility limitation, chronic pain, chronic fatigue, mental health and a billion other things besides. I can’t speak for someone with, for example, a sensory impairment, but they can speak for themselves.
So those are my thoughts for the day. I probably have more, but this is quite a lot of ‘reckoning stuff on the interweb’ for one afternoon. Probably ought to do some real work now. Toodle-pip.
Oooh… actually one more thing before I go. If you’re about to type a comment that starts ‘Have you tried…’ then please don’t. I know it’s well-intentioned but seriously I was diagnosed in 2012. If you thought of it in the time it took to read this post, you can probably assume it’s been covered.
*No. No idea why I think my bowel is male. That’s probably a whole year of therapy right there.