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.

A New Society of Authors Bristol Group

Yesterday evening, I went along to the first meeting of the new Society of Authors Bristol Group. I’ve been a member of the Society for more than 10 years and I try to go along to their events when I can, but they’re often in London, which is a bit of a trek unless I can combine it with something else. So I’m quite excited at the prospect of something more local.

As ever, it was a fascinating mix of writers from different fields, with several novelists, a writer for young adults, a ghost-writer, one other ELT writer like myself, plus people who’ve written plays, short stories and poetry. The mix, inevitably, makes these events slightly less focused than the ELT groups I’m part of, but over the years, there have been all kinds of useful snippets that I’ve taken away from SoA events and I’ve got to meet lots of interesting people.

As this was the first meeting, it was all about discussing how we want the group to work. Three local SoA members, Jonathan Pinnock, Margot Arendse and Jean Burnett, helped to set things up and Anna Ganley from the SoA came along to talk about the work she does helping set up and support other local SoA groups. Rather rashly, I offered to write this post as a summary of the first meeting. I didn’t take any notes, so don’t expect perfect minutes, but hopefully, I can just summarise some of the main points. Here goes …

Where and when?

We met at The Square, in Berkley Square, Bristol, a private members club which the group has membership of, for the next year at least, to allow us to use a room there for our meetings. They have comfy chairs, a bar and disabled access via a lift.

The initial plan is to have meetings every two months, with the next in January, probably at a similar early-evening time – we met at 7 and went on until nearly 9.

Who?

The group is open to any SoA members in the area. Although it’s been set up as SoA Bristol, there was general agreement that we would like to include members from Bath and from the surrounding area as well. Although the bi-monthly meetings will probably be in Bristol for now, we talked about the possibility of arranging some meetings or events in Bath too.

What?

The big question then remained as to what we want the group to do. I won’t try to cover all the specific suggestions here, but as we have a diverse membership, we discussed covering a mix of topics to appeal to everyone. We talked about having different speakers both from local contacts and organized via SoA HQ. We also spoke about how the group can be a hub for people to meet and then maybe arrange their own smaller groups (formally or informally) with a particular special interest. I’m certainly keen to get together a local Educational Writers group in some form. We discussed how the group might become involved in wider events, such as the current Bristol Festival of Literature, or arrange events to involve an audience of non-members, readers, etc. And we all agreed that as well as speakers and organized events, the social aspect of the group should be key too. Cheers to that!

Next steps

Based on the ideas already put forward, the group organizers are planning to put together some form of questionnaire to send out to all SoA members in the area to ask for their input. So if you’re an SoA member in  the general Bristol and Bath area, do look out for that and please take the time to fill it out.

In the meantime, there’s already a Bristol Society of Authors Facebook page. It’s a closed group, which means that you click on the button to ask to join. Hopefully, this will become a place to share not just news of the group’s activities, but also links to other things going on locally of interest to members. And if you’re on Twitter, I’ve started a #SoABristol hashtag to use and follow.

I came away excited about the possibilities for the group and I’m already planning to meet up for a coffee with a writer I met who lives nearby #lovenetworking

The Future of Publishing - the future of writers?

On Saturday, I went to a Society of Authors' Educational Writers' Group seminar in London. I've been a member of the society for a few years and go to their meetings and events on and off. They often throw up new ideas, new contacts or just things to think about and Saturday's event was no exception. There were three speakers from publishers who each gave a presentation on the topic of "the future of publishing", followed by a Q&A. There was, unsurprisingly, quite a bit of talk about new media; its pros and cons, in which areas and markets it had potential (and where it didn't), when to embrace and when to reject it.

What I found more interesting though was the thorny issue of how we can actually make money from 'more than just books'. I've raised questions before about all the extra components that seem to go to make up many ELT materials nowadays, many of them e-components - CD-ROMs, e-workbooks, online resources, blogs etc. In my post about the Global launch, I pondered whether all the different parts we'd put so much effort into producing would actually get used. So it was very interesting to hear Sue Jones, Managing Editor of ELT Publishing at Macmillan (who publish Global) admitting that they know that much of this extra material isn't really used and certainly doesn't make any money, but because it's come to be expected, publishers have to produce it just to keep up with the competition. And of course, all this extra material has to be written by someone. And if it isn't making the publishers any extra money, then how can they afford to pay us writers to produce it? Sue explained that they've had to give up on the idea of royalties for many products because it's too difficult to tease out who contributed what when you've got such a team of people working together on different components and also because, apart from the actual student's book, much of it is bundled or given away free. Fair enough, I suppose, but it was her next comment that she's often happy to agree a double fee rather than get caught up in royalties that caused a rather sharp intake of breath from many in the audience!

From my experience, and talking to other writers at the meeting, theirs too, fee-based writing tends to be incredibly mixed in terms of rewards, especially when it comes to 'new' media. I started writing material for CD-ROMs almost 15 years ago for a little software outfit in Prague. Back then, it was all very new and we were very much feeling our way. We didn't know quite what we could do, how much work it would involve or how much money the final product might go on to make. Inevitably, it turned out to involve a huge amount of work for relatively little reward - although I can't really complain because my modest fee for the work went towards the fees for the first part of my MA and kick-started my move from teaching to publishing! What surprises me though is that publishers still haven't worked out how much work is involved in many of these products and so what an appropriate fee might be. This combines with the fact that most work in publishing happens in such a rush and a panic that there's rarely time to get fees or contracts established before you actually get started on a piece of work. Thus the rates of pay - when you come to divide up your fee by the hours you ended up working - can vary wildly. Very occasionally an editor overestimates and it works out quite well, but more often than not, an everchanging brief drags the work out and the hours pile on and you see your hourly rate drop and drop. So that on one recent major project (that I won't name!) I found by the end that I'd earned all of £10 an hour for all my efforts!

And what's the effect of all this? Well, for me, it means I'm more cautious about taking on this type of writing work that's interesting, but potentially not economically viable (and always involves more work than you originally agree to!). I'm erring towards jobs that offer a clear hourly rate rather than a fee - which leads me back to lexicography, corpus research and editing rather than writing. And if other writers follow suit, who will take on these jobs - new and inexperienced writers, who are lured by the glamour but then equally move on when they discover they can't afford to keep giving their time away so cheaply? Increased turnover of writers may mean fresh ideas, but what about consistency, quality or continuity on big projects?