Disability Pride month: writing with one arm behind your back

July is disability pride month and at the start of the month, I attended a webinar by the Authors with Disabilities and Chronic Illnesses (ADCI) group of the Society of Authors. At the time, I was laid low with Covid, but it provided lots of food for thought and I’ve been mulling it over since.

My situation

I don’t think of myself as having a disability, but I have been living – and working – with chronic pain for more than 20 years. It’s something I’ve written about previously and how it affects my ability to work. A few years ago, it was really debilitating with constant pain throughout my upper body that left me struggling with even the basics of life. As is common with chronic pain sufferers, the pain volume control on my nervous system had got turned right up to the max.

Thankfully, over the past few years, I’ve got my condition much more under control and have dialled things back to just the site of my original injury – a dislocated right collarbone. I now spend a lot of my time pain-free and the pains I do experience are localized and often no more than passing tweaks and twinges.  However, whilst things are hugely better than they were, I’ve discovered that I still need to operate within certain limits. Last year, I started on a new project that involved quite focused, detailed sort of work. It didn’t take long for my pains to flare up again quite badly and I realized I couldn’t overdo things. After a few weeks, I reduced the number of hours I was working and things settled down again. Since then, I’ve been working 15 hours a week on my main project, with a handful of extra hours on admin and other small projects, up to a maximum of 20 hours a week. And that seems to be a comfortable, sustainable level.

It's great to have found a balance that works, but I’m aware that as a freelancer, it’s not always easy to guarantee a regular workflow at the same level and, beyond my current project, I’ll be back to trying to take on enough work without overloading myself physically. And of course, part-time hours also means a part-time income. I probably earn around 60% of what I could if I was able to work full time, which brings me down to well below the average income in the UK – although not low enough to be eligible for any kind of support.

Inclusion and access

Getting back to the webinar, one of the key topics of discussion was inclusion of those with disabilities and chronic illnesses within the publishing industry in general and more specifically what can be done to improve accessibility for writers. One speaker talked about the use of accessibility riders – a document that sets out someone’s accessibility needs at the start of a contract. It’s a really interesting idea and one that’s backed up legally in the UK by the 2010 Equality Act. Of course, it’s relatively easy to imagine the kind of adaptations an employer might make for an employee who, for example, was a wheelchair user and needed ramps or an adapted desk setup. What’s less straightforward is the kind of adjustments needed for people with invisible disabilities and chronic conditions. And of course, once you get into the freelance realm, the responsibilities of those you work for become much more of a grey area.

In my own case, the practical adaptations needed are not obvious. For several years when I was first diagnosed, I tried using voice recognition software to avoid too much keyboard use. It was something that publishers didn’t have a problem with and even supported; in part because I had my own software, so it didn’t require any input from them! I remember one publisher even inviting me into the office to give a demo and taking a real interest in how it worked. However, I gradually realized that keyboard use isn’t actually an issue for me, it’s navigating and formatting with a mouse that causes me pain. You can navigate using voice software but it’s really tricky and frustrating, so I eventually gave up. I’ve tried a whole variety of different devices and settled on a combination of a graphics tablet which I use with my left hand and a regular mouse which is just better for certain tasks and which I use (sparingly) with my right. That means that I try to avoid tasks with lots of fiddly formatting, including lots of work on digital materials which tend to have annoyingly mouse-heavy templates or authoring software.  

Back in the days of working in a headset with increasingly frustrated cries of "scratch that" and "undo that" coming from my office!

Perhaps more significant for me though is the amount of work I can manage. As I said above, 15-20 hours a week seems to be sustainable and those hours need to be evenly spaced, not bunched up into short intensive bursts. Does that mean that I just have to put up with a lower income? Would it be reasonable to ask to be paid for hours I’m not able to work in the name of equity? Perhaps where there should be more flexibility is with workload. Ruling someone out of a project because they’re not able to work a lot of hours in a short period is surely discrimination.  It’s sometimes possible to negotiate taking on a smaller chunk of a writing project, but not always. And of course, taking on a smaller chunk of work means accepting a smaller fee and the inevitable gaps between lots of short projects which is harder to manage, means more admin and is financially loss-making. Spreading a piece of work over a longer timescale would be a better solution all round but would require changes in scheduling and longer deadlines. That should be perfectly possible in publishing, but often doesn’t happen because of poor planning and squeezed schedules. It’s a source of frustration for most freelancers, for me it’s either a source of pain, or more likely, rules me out of work.

Awareness

Should I be more transparent about my condition? Should I have an accessibility rider setting out what I can manage and what adjustments I might need? I certainly don’t keep my health a secret and many editors who I’ve worked with over the years know about my situation; although they don’t always fully understand the implications. I know of well-meaning editors who haven’t offered me work on projects because they thought it would be hard on me physically, when actually it would’ve been fine. Especially with the ups and downs of a chronic condition, they may have dealt with me at a time when I was really struggling and had to cut back or pull out of something and assume that the same applies going forward. That’s especially problematic given the big improvements I’ve seen in recent years. And of course, I don't know how many editors have just chosen not to offer me future work because they thought my health limitations would just be too much trouble ...

And I don’t always mention my health and its limitations.  In part, that’s a conscious decision. The changes I’ve made to control my condition recently have largely been about mindset and a mind-body approach to pain control. In short, I’ve shifted my mental focus away from the pain and stopped letting it define my life. So, I don’t want to have to keep making an issue of it in a work context. If I don’t anticipate something being problematic, there seems no need. So sometimes “availability” just ends up doing a lot of heavy lifting. When I say that I don’t have enough availability to take on a job, I’m sure people assume I have a packed schedule, when in reality, they’re often just asking for more hours than I can comfortably commit to, even with a completely empty schedule.

The ADCI webinar brought up many other issues, some relevant to my own situation, some less so. There’s the issue of variability for those with chronic conditions, managing work through good days and bad days, good patches and bad patches, good energy levels and dips - and how that affects schedules and deadlines. There’s the concept known within the community as ‘spoons’, something I could really relate to when my condition was at its worst, which you can read about here if you’re interested. And then there’s representation of people with disabilities and chronic conditions in what we write, including in ELT materials. But that’s a topic for another day, I think.

Disability works

Those of you in the UK may have noticed that last week, the BBC was focusing on disability in the workplace with its Disability Works theme. 28 February is also International RSI Awareness Day, so it seemed like a good time for a post about working with a chronic pain condition. For those of you who don't know, I had to leave my in-house job with a publisher back in 2000 because I was suffering debilitating pains in my hands, wrists, neck and shoulders that made it impossible to sit at a desk nine-to-five every day. At that time, I was diagnosed with RSI, but over the years it's morphed into a more general chronic pain condition, but still mostly affecting my hands, arms and shoulders.

Until recently, I would have described myself as having a chronic health condition rather than being disabled. A few months ago though, I started a part-time MA course which involves commuting from Bristol to Cardiff a couple of days a week for lectures. I was a bit wary about how my studies would fit around my work, but I hadn't been ready for how physically challenging I was going to find it. After 16+ years of working from home, managing my time and controlling my environment, it was a real shock to the system.

It sounds a bit silly to say that I struggled with getting up early - leaving the house at 6.30 in the morning to get the train to Cardiff - but my pains make getting started slow-going some days, especially if I've had to take painkillers the night before which leave me feeling drowsy and 'hung over'. On a bad day, a 30-minute walk to the station in the cold and damp is really the last thing my body needs. And carrying a bagful of stuff has been a real killer. My shoulders are where the worst of my pain is, so I tend to avoid carrying bags as much as I can. I started term heading off with a packed lunch, a flask of tea, notebook, tablet and of course, a brand new pencil case. I soon gave up on the lunch and the flask, and on days when there are library books to take to and fro, I've had to ditch the tablet too.

I'm finding ways to cope, but it's really made me think about how much my health makes me unable to do - it really is a disability. It's also made me realize just how much I appreciate being self-employed.

Self-employment and disability:

Environment: The most obvious thing people think of when I tell them about my situation is my desk set-up. My work station does take into account all the usual ergonomic advice, but I don't actually use that much specialist equipment. Having tried all kinds of things over the years, the main difference to my set-up is a graphics tablet instead of a mouse - which I find gentler on my hand because I don't sit and clutch it all the time. I do have voice recognition software, but I only use it occasionally.

Time management: What I think is far more significant is being able to manage my own time. For me, the biggest no-no is sitting at my desk for long stretches, so I take LOTS of breaks. I generally work for 3 stretches in a day with significant breaks between (one stretch in the morning and two in the afternoon), but between those longer breaks I fidget a lot. I rarely stay sitting for more than half an hour before I find some excuse to get up - make a cup of tea, go to the loo, collect the post that's just arrived, put on the washing/dishwasher, empty the washing-machine/dishwasher ... you get the idea. And perhaps even more importantly, I can manage my work around how I'm feeling. My condition's very variable, so sometimes I can manage a fairly full, 6 or 7 hour working day, other days I'm struggling to think at all through the pain. As a freelancer though, on a bad day, I can just do less - get up late, work on easier stuff, go for a longer swim - whatever helps get me through.

Choice: Similarly, I can choose to take on work that I know will suit me. A lot of the time that just means taking on less work. I know from speaking to freelance colleagues that I take on less than most and I do less juggling of several projects running at the same time. I only take on as much as I think I can cope with without overdoing it. I can't afford to find myself working long hours and weekends because everything's come at once - my body just won't allow it. That means that my income is effectively that of a part-timer, but that's something I've accepted. I also think carefully about the nature of the work I take on. Some time back I found that I had to pull out of a couple of projects that involved work on digital materials because the work was just too fiddly - lots of keying in or copying and pasting text repeatedly to fill fields. It killed my hands and just wasn't sustainable. Now I'll ask about formats and templates, etc. up front before I agree to work on something.

Overall, I love being self-employed and most of the time, it enables me to lead a productive working life while managing my condition. I know lots of other freelancers who are working with health issues that limit what they can do to a greater or lesser degree, so I just wanted to give a shout-out to all of you. Hope your work-arounds are working!