Industry must adapt to bring real change for people with disabilities

Industry must adapt to bring real change for people with disabilities

The industry has proven itself to be incredibly adaptable over the past 18 months. How can that momentum be harnessed to bring about real change for those living and working with disabilities? 

Disability doesn’t just happen to other people, it doesn’t discriminate, it can affect anyone at any time and there is nothing you can do to protect against it. Some 14.1 million people in the UK are disabled, approximately 22% of the population. They have had to come to terms with the fragility of the human body and now, as a result of the pandemic, we are all aware of how vulnerable we are. But ill-health or disability shouldn’t mean the end of a career or an obstacle to even starting one. It does mean adjustments have to be made, things need to be done differently, and while there is comfort in doing things the way they have always been done, new innovations and improved working practices benefit all.

The publishing industry showed remarkable adaptability during lockdown, demonstrating a creativity and speed of change that was inspiring. The members of peer support network Authors with Disabilities and Chronic Illnesses were encouraged to see the rise in online meetings and virtual events, and have been able to be part of the industry in ways we never thought possible.
    

Up until now, disabled authors have shied away from talking about the reality of our lives for fear of prejudice and discrimination, and with good reason. In a survey in 2020 by health and welfare charity Leonard Cheshire, 20% of UK employers said they were less likely to employ a disabled person; in the Professional Publishers Association’s Diversity & Inclusion Industry Survey 2021, only 6% of respondents had a disability or impairment—significantly lower than the overall UK working age population of 19% (Department of Work and Pensions).

Ableism teaches us that we are a burden, and that our disabled bodies require “fixing”. Historically we have been shut away and now we are portrayed in the media as benefit scroungers or inspirations, and in fiction as either the villain, the sidekick or the sacrifice, always enabling the non-disabled hero to triumph. It’s a toxic narrative that needs to change and this can be done by centring disabled voices and understanding the true reality of disability. The publishing industry has the power to do this in incredible, positive ways, and this article is our invitation to all those within the industry to look at how you can make this happen.

What is disability?
According to the Equality Act 2010, the term “disability” covers everything from physical impairment to chronic illness, mental health problems, neurodiversity and energy limiting conditions. You are considered disabled if your condition “has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities”.

The common narrative is that disability equals incapability, but disabled people are some of the most focused, determined and creatively adaptable people you will ever meet—they have to be to navigate a world not designed for them. In fact, the social model of disability proposes that it is harmful attitudes, stereotypes and society’s structure which truly disables people. It is these obstacles that prevent us from living the same lives, with the same opportunities, as non-disabled people.

Changing the status quo requires allies, active participants within the industry who see that a more inclusive approach doesn’t just help disabled authors. If we create an industry that empowers everyone to find ways of working, no matter their physical ability, no one has to quit when ill health and disability strike.

Inclusivity
Enabling disabled people to access the same opportunities as non-disabled people isn’t an act of charity—it’s required by the Equality Act 2010. Under “reasonable adjustments”, changes have to be made to a workplace or to the ways things are done to remove or reduce the disadvantage for the person with the disability. 

For adaptations beyond reasonable adjustments, funding is available through Access to Work for both employed and self-employed people, and practical and financial support can be provided for special equipment, adaptations, extra transport costs and support worker services.

For some disabled authors, access to suitable aids and support is all they require, while others will also need flexibility around deadlines. This isn’t due to laziness or lack of a work ethic, it’s a result of living with conditions that can be unpredictable and require adaptability; intentionally building extra time into a project is a simple way to insure against potential problems. 

An open dialogue
Disabled authors and employees need to be able to have open conversations without fear of discrimination and prejudice; they need to know they will be met with patience, a willingness to understand and flexibility in finding a solution. 

We are all guilty of unconscious bias, so it’s essential that all staff members receive specialist disability awareness training, no matter the size of the organisation. Education means people are prepared to have the important conversations that up until now have often been avoided for fear of saying the wrong thing.

It takes courage to talk about your own ill health and there is no one size fits all when it comes to disability; many conditions are invisible and often dynamic, fluctuating over time. We have to find a way to make it easier for authors with disabilities to self-identify without the fear of judgement and rejection.

Start by including an “access needs” section on every form, as standard practice. This provides a neutral place to state any necessary requirements, without putting the onus on the disabled person to make a big, public declaration.

Adaptability
Many of the activities you take for granted as “easy” and “normal” are barriers to disabled people. Some are insurmountable, while others take planning and preparation to make them possible. Nobody asks for adjustments unless they genuinely need something—however strange it might sound. Small changes are often all that is needed to make things possible and accessible. Generally, the disabled person knows exactly what they need to make a situation viable, but sometimes they will require your expert advice on possible adaptations. 

It is far more empowering to approach the challenges of disability from the angle that we are a team and everybody succeeds if we work together.
 
Accessibility 
Accessibility isn’t just ramps and blue badge spaces—only 8% of disabled people use wheelchairs. True accessibility is ensuring that everything from websites, submission portals, meetings, events, printed material and communications are accessible to all. 

Consult with disabled employees and service users and ask them what they need, what is working and what isn’t; value their feedback over non-disabled experts and carers. You might need to adapt the form of communication, use large print or audio, closed captions or British Sign Language, but these are small steps that will ensure your project is the best it can be. 

If you are putting out a call for under-represented writers, remember to include disabled people. Provide contact details so they are able to discuss any access concerns and share details of your experience with working with disabled authors, so they know they will be welcome. 

You can download disability arts organisation Unlimited’s “Cards for Inclusion”, a free card game that explores how barriers to access can be removed. It encourages new, creative thinking to old, often unappreciated problems. Building in access from the start of a project or event is far cheaper and easier. 
 
Meetings and events
All events and meetings must be physically accessible, with step-free access to buildings and stages, appropriate seating and provisions for those with specific impairments, for example hearing loops or British Sign Language interpreters. 

For those unable to travel, there also needs to be a virtual alternative. Up until the pandemic, we were told this was impossible, but now we know it’s not only possible but easy to achieve. This progress must not be lost despite any returns to “normal”. You can read more about accessible events and the Authors with Disabilities and Chronic Illnesses events guide in the article by Helen Barrell.

The Purple Pound
As established by other “own voice” authors, representation matters, not just to disabled readers, but also on a broader scale of understanding experiences that are not our own. This doesn’t only apply to fiction. Disabled authors are capable of writing on a diverse range of subjects and their insights on lifestyle, relationships, travel, sport and nature, to name but a few, are severely missing from bookshelves.

Disabled people are not represented in all genres, and disabled households are also often overlooked when it comes to spending power; known as the Purple Pound, businesses are losing over £2bn a month by ignoring the needs of disabled people.

Disabled readers don’t want to solely read books by disabled authors, but seeing themselves represented on the page and in the industry is important. Visibility shows people what is possible and spotlighting disabled authors does this.

However, promotion must be handled sensitively. Some authors are willing to discuss their experiences of disability, but the focus must always be on their books first. Disabled pain is not a promotion tool.

Positive portrayal
In the past, disabled stories have been told by non-disabled people without lived experience; this has proven problematic and alienating to the disability community. When referencing existing stories of disability or choosing future publications, make sure they aim to pass the Fries Test. Similar to the Bechdel Test, which is a measure of the representation of women in fictional works, the Fries Test ensures positive disability portrayal. For more details, see the article by Catherine Miller and Lisette Auton’s piece on avoiding disability tropes.

Gathering momentum
The publishing industry has taken steps to become more inclusive and as a result we are hearing more diverse voices, learning about different lives and expanding our understanding of the world we share. The publishing industry holds enormous power and therefore must ensure that everyone is represented.

I have felt an incredible responsibility writing this piece, because how do you cover something as vast as disability in a single article? How do you capture the nuance of different disabilities and even differences within the same disability? You can’t. That’s why this Disability Issue of The Bookseller is only the start of the conversation, and one that disabled authors look forward to continuing with the industry long after this edition of the magazine goes to print. 

For a free guide to working with disabled authors, visit clairewade.com/adci.