A Day in the Life of a Disabled Writer
It’s July, which means it’s Disability Pride Month. I know what you might be thinking, you didn’t even know there was such a thing as Disability Pride Month and you’d be right in thinking there isn’t much (if any) coverage of this celebration in the media. Until the world catches up, it falls to disabled people to shout about it. So, I thought I’d share a little insight into what it’s like to be a disabled author. This is an average writing day, one where I stay at home and work on my new novel.
7:45am – Reluctantly get out of bed with the support of my mum, eat breakfast (tea + chilli Marmite on toast), check Twitter, emails, do the day’s Wordle (yes, I still enjoy Wordle). Because of my disability, my body is a little slow to get going in the morning so if I need to type I’ll use my mouse and the onscreen keyboard. If you get a ‘like’ from me on Twitter instead of a reply, it can be because I just don’t have the energy to type.
8:30am – My carer/PA arrives to help me wash, dress and get ready for the day. I use an agency to employ carers. When my care is running smoothly I have carers I know well, who are on time and efficient. However, staff shortages recently, mean their time of arrival can be anywhere between 7am to 10:15am. It can be a struggle to get on with any work or concentrate if you’re not sure when someone will arrive. I don’t tend to use this time wisely! Scrolling, YouTube, general faffing. I’m writing this blog post as I wait for my carer. Today she’s probably going to be here at 9:30am. As you can imagine, this lack of control over routine is maddening and is the biggest challenge in terms of my productivity, especially if some days I’m not dressed and ready until 11:45am. It also means I have to do a lot of admin and forward thinking, e.g. make sure meetings are booked in after 11 and hope my care runs on time – or call the agency and give them plenty of warning, cross my fingers, say a little prayer, etc etc.
10:00am – I want to tell you I get straight on with writing, but the reality is, I’m back on Twitter and emails again.
10:15am – The writing can finally begin. Sometimes I start with freelance writing work first thing, but if I’m not on a deadline, I can work on my novel. Depending on how motivated I feel, I either work for an hour, then have a break or set a timer and work for blocks of thirty minutes. The latter is when I’m forcing myself to get the words down! Once I’m up and showered and dressed, my arms and hands are able to move a little easier so I can type on a standard keyboard. In the winter, because the cold makes my fingers stiffer and harder to move, I wear splints around my knuckles to support them.
My disability affects my muscles, making them weak and tire easily and this is something that gets progressively worse over time. Typing isn’t too difficult, but there are still times I find it too tiring, where my arms feel heavy and exhausted. On days like this, I type on my phone’s Notes app, as that doesn’t require much movement. I’ve recently debated using dictation software, as that’s likely something I will have to use in future, but at the moment I find it awkward and cumbersome. Maybe I’ll persevere.
Sometimes, depending on when it’s scheduled, I’ll record an episode of my podcast Confessions of a Debut Novelist and that takes about an hour, unless my guest and I can’t stop talking!
12:30pm – Lunch! Always the same time, because we all need something to aim for!
1:30pm – More writing! Here, I usually hit a post-lunch funk and I might do some research as well. Moving my hand between keyboard and mouse takes quite a bit of energy so even things like scrolling Twitter and replying to a Tweet can get tiring. Lately I’ve also been doing publicity for The Seawomen which means preparing for events or being interviewed for podcasts. One small silver lining of the pandemic has been a move towards more virtual events and online meetings – it makes things much easier when I don’t have to travel!
3:00pm – Freelance work. Here’s where I create and post content for a small business I work for.
4:00pm – Another visit from a carer to make me a drink and help me to the bathroom. These set times can help structure the day but they can also be disruptive and remove any sort of spontaneity. But realistically, by 4 I’m pretty much done in terms of brain power.
4:30pm – As soon as my carer leaves my reading time begins! I read for at least an hour every day, sometimes more, particularly if I’m recording a podcast. If I’m reading for the podcast, I make notes about the questions I plan to ask as I’m going. If I’m reading for fun or inspiration, I’ll often take photos of passages where the writing inspires me or does something particularly well. Books are often too heavy for me to hold/lift so referring to passages regularly is difficult, that’s why I take photos instead.
6:00pm – Dinner. I like an early dinner.
7:00pm – Evenings are normally the same. Mooching online, TV, sometimes more reading if I’m particularly hooked, and listening to the odd podcast while I do my skincare. Sometimes I use this time to edit an episode of Confessions of a Debut Novelist. I’m much more of an evening person, and while I currently use this time to relax, I’m starting to wonder if this time would be better spent writing. Maybe it’s time to experiment.
10:00pm – Get into bed (with support) and watch TV and scroll Twitter until I can’t keep my eyes open.
There you go, my daily routine! As you can see, carer times can help structure the day but they can also be frustrating! I’m fortunate that my disability is pretty stable so my energy levels are similar day to day and like every disabled person, I find ways to adapt. Hope you’ve found this insight interesting!