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How can we support authors and publishing staff with disabilities and chronic illnesses to bear their extra, unseen workload?
Reading Norwegian academic, writer and Barbellion Prize winner Jan Grue’s Guardian article about how disabled people cannot yet participate in society on an equal basis with those who don’t have a disability or chronic illness, and the "invisible work" he has to put in just to live his daily life, opened my eyes as wide as saucers.
I’ve long accepted it as a fact of my life that doing some things in an inaccessible environment takes me longer and uses up energy, of which, now I have chronic fatigue, I have little to spare if I want to work, rest and play, as the old Mars Bar advertising slogan went. For example, have you ever noticed that in older public buildings steps take you straight up to the entrance, but if you want the ramp you have to walk/wheel three times as far, or that the accessible entrance is often round the back past the dustbin store? Do you realise that for someone with mobility and/or energy difficulties, a journey to a meeting isn’t just a bus or train ride, it takes hours of planning to find accessible transport means, requires set rest periods before and after, and probably costs far more in a taxi fare than your Tube, bus ride, or 20-minute walk would? And do you know that someone who is neurodivergent can experience sensory overload in meetings and places they are not familiar with?
Having read Grue’s essay I thought about how invisible work affects my day-to-day job as a novelist and freelance writer, applying his theory to authors with disabilities and chronic illnesses (DCI), plus staff who work in publishing. Cat Mitchell, lecturer in writing and publishing at Derby University, who specialises in researching disability and publishing, agrees. "There is definitely a lot of invisible extra work for disabled writers and workers," she says, "and there also sometimes feels like there’s a pressure to go above and beyond to prove that being disabled isn’t holding you back in any way, particularly when you feel under greater scrutiny and less likely to be forgiven for mistakes by people with ableist attitudes."
So what can the publishing industry do to place DCI authors on a more equal footing with their non-disabled colleagues? Flexibility in contracts is a starting point
It can feel that as one of the few disabled people in the organisation, you have to prove yourself more than others do, marking it harder to put your head above the parapet and ask for adjustments to help you work. From my perspective I, a wheelchair user, embrace online meetings rather than having to travel. Thankfully since the pandemic online meetings are the norm, meaning I don’t have to face difficulties with travelling, or find someone to go with me for free to help. Zoom means I don’t have to use up my energy reserves on a commute, but where it gets tricky is when everyone else is meeting face to face and I’m the only Zoom in the room. Spot the odd one out anyone?
Other DCI authors told me their own stories of the invisible work they face, which non-disabled authors don’t. "Everything I do has opportunity costs, energy costs, financial costs, emotional costs and so on, way beyond the act itself, whether that’s writing and editing or doing a festival talk," said one, commenting that even planning takes its toll. Another author agreed about the invisible labour they put in, "and the toll it takes, what else it means we can’t do", such as having a social life, and feels that when they explain their position the industry still doesn’t understand.
So what can the publishing industry do to place DCI authors on a more equal footing with their non-disabled colleagues? Flexibility in contracts is a starting point, says Mitchell. "Companies such as Hachette are introducing more flexibility into their contracts to allow for less strict deadlines in case of a flare up of symptoms, and clear agreements related to extra tailored support around communication and publicity commitments. Hopefully we’ll see this implemented across the industry."
Further suggestions from authors I spoke to include making Access Riders commonplace so we don’t have to keep explaining our access needs; a place to rest and not talk between event sessions; empowering authors by being open about codes of conduct and complaints procedures; the option to attend events virtually; explainers for neurodivergent people on terminology and "the rules", along with simpler submission forms; help with PR and post-publication publicity; access being built in at the planning stage for events and festivals; and acknowledging that Covid-19 hasn’t gone away and that some people are still at high risk.
We have a long way to go to achieve all those things, but they are doable. Grue wrote in his Guardian article "what I cannot see, cannot think into being, is a world where there is no greater effort required of me than of the average person, whoever they are." If we truly want equality in publishing, and to attract and retain disabled and chronically ill authors and staff, then the industry has to grasp the nettle and instigate change, so Grue’s equitable dream does become a reality, in publishing at least.