Disabled writers who, like me, make a living through educating non-disabled people about their lived experiences, span a lot of different sectors. There is an ongoing demand for disability education and resources that support organisations’ diversity and inclusion efforts. Disabled writers use their skills to create books, appear in the media, lead content creation projects, and write articles in print and digital media. And we’re also hired as independent contractors by businesses of all sizes and specialisations.
By definition, we are writers, but our work opens doors to non-writing related consulting work that puts our lived experience perspective to good use. This means people working in all sectors need to have a clear understanding of what fairness looks like for disabled writers.
But trying to monetise your lived experience as a disabled person frequently results in ableist behaviour from prospective clients, readers, and people who listen to us speak. It takes a thick skin, a lot of self-awareness, and strictly imposed personal boundaries on who you work with, how you work, and why you choose to work with a specific client.
“For generations, disabled people have had their work devalued. We should be the generation standing firm in getting paid what we’re owed"
The risk of stigmatisation and discrimination is never far away, because it’s embedded in history. According to Sarah O’Brian, an autistic writer who works in the charity sector: “We've come from being in freak shows and institutions. We're seen as something that requires an audience for empathy and emotion. We’re doing something difficult: moving from being on a stage where everything about us has to be exposed to being listened to.”
Writer Melissa Parker has experienced this first-hand. My first introduction to her work was her cover-girl appearance in Stylist Magazine, where she sat confidently in her wheelchair for a feature on a hundred women’s relationships with their bodies. According to Parker: “For generations, disabled people have had their work devalued. We should be the generation standing firm in getting paid what we’re owed. Non-disabled writers don’t understand disabilities, they often show ableism/ignorance in their comments.”
Pushing back against ignorant comments also frequently comes with risk, as Charli Clement, a neurodivergent writer and speaker, points out: “It can be difficult to push back on this for fear of the piece being scrapped, or not getting any more work from them if you don’t provide what they want. Especially if you’re new to the industry.”
This anxiety about burning bridges on future opportunities empowers clients to treat their writers with ignorance and disrespect. For example, an editor once asked Melissa Parker to ‘grade’ her brain injury, like a school evaluation. Parker, Clement, and O’Brian call this "mining for trauma", which is typically done for clickbait purposes. “I am often asked in the editing process to give more details than I am comfortable with, even when I have intentionally left them out," explains Clement.
Lydia Wilkins, a journalist and speaker specialising in disability and social issues, describes the key difference between disabled writers and their non-disabled colleagues: “There is a personal cost to (disabled peoples’) energy, emotion, etc.”
As a disabled person who does editorial and communications work for various disability focused organisations, Emily Ladau understands this reality all too well. I asked her why she thinks so many people undervalue disabled writers: “They assume it's about having a conversation or writing down some thoughts. They don’t think that much time and work goes into figuring out how to communicate life experiences.”
The impact of ableism at work
A lot of the extra time and work demands on disabled writers is due to the process of earning empathy. Many who have experienced this note that you don’t have to work nearly as hard to receive this kind of empathetic response when discussing something that the majority of non-disabled readers can easily understand.
“The writer who gets to write about bad landlords doesn’t have to go into as much detail for people to understand to what they're talking about,” explains Sarah O’Brian. “For disabled people, we have to provide so much more evidence to get people to understand what we're talking about.” Part of the problem is that ableism can manifest itself in subtle ways that people are often not aware of, and it’s a relatively modern idea. According to Oxford Reference, the word 'ableism' was first coined by American feminists as recently as the 1980s. Not everyone knows what it’s like to experience ableism, but ableism is everywhere.
Last year, the Equality and Human Rights Commision surveyed British journalists, and learned that 14% are disabled, and 16% have a work-limiting condition. Many of the disabled people who participated in The Equality and Human Rights Commision Report were called “lazy” for being unable to complete certain tasks, and say colleagues don’t take their disability seriously. Newsrooms have a stretched and underfunded workforce, making accessibility needs difficult to ask for. For more complete control over how they work, many disabled journalists choose freelancing instead. In broadcasting, disabled people make up only 5.4% of this industry, according to The Writers’ Guild Of Great Britain. The 2021 UK Publishers’ Association survey revealed that the number of disabled people in this industry is 13%.
“Listen to disabled writers and respond proactively. Accept that everyone is still learning. Don’t speak over, or for disabled writers”
In a May 2022 article for The Guardian, disabled writer Lucy Webster, discussed the publishing industry’s under representation of disabled authors. Many of the disabled authors Webster interviewed admitted that the most inaccessible characteristics of the industry are long hours, lengthy gaps in when authors are paid for their work, and conferences. Many of these issues are also common in other industries and make workplaces inaccessible. 24% of working age adults are disabled and 53% of that demographic is employed, which is small in comparison to their non-disabled peers (81.6%).
The representation gap is caused by widespread stereotypes that make getting reasonable adjustments in the workplace extremely difficult. You see this the most often in news stories that treat disabled people as tools of inspiration that make non-disabled people feel good (otherwise known as ‘inspiration porn’).
According to Lydia Wilkins, equitable approaches to hiring and working with disabled writers are dependent on a willingness to learn from disabled people: “Listen to disabled writers and respond proactively,” she says. “Accept that everyone is still learning. Don’t speak over, or for disabled writers.” Although, we cannot listen and learn from disabled writers if we don’t know where to find them. One of the most valuable solutions to this problem I have come across is the Disabled Writers website.
Disabled Writers is an online resource that connects disabled writers with editors. Their website states that promoting paid opportunities for “marginalised members of the disabled community” is a core part of their mission statement. Despite the website’s positive reputation amongst disabled activists, not everyone uses it. According to Anna Hamilton, Disabled Writers’ database editor and social media manager: “Mainstream outlets still aren't hiring disabled writers to write about disability issues. One example of this is the many pieces on the government response to the pandemic, and long COVID. Legacy outlets usually assign these pieces to writers who are non-disabled.”
Writers tell me that many editors reject or scrap their stories that don’t exploit their experiences through trauma mining or inspiration porn. According to Charli Clement: “People only want disabled people when they’re useful, inspirational, or can make non-disabled people feel better about their lives. Our stories are not seen as needed by society, even though our community, culture and existence is worthy of discussion, celebration and understanding.”
The extra cost to disabled writers
To protect herself from the misguided intentions of others, Lydia Wilkins has had to adopt strict boundaries: “Any organisation that won’t document fees or terms and conditions and offers a £40 voucher isn't worth it. ‘Exposure’ won’t pay bills.”
When you agree to work for exposure, you’re working for free. Working for exposure comes with promises of access to large, influential audiences and networks, but this form of ‘payment’ is vague, precarious and, as Hamilton explains, adds additional burden: “Many of us already manage our health and whatnot in an unpaid capacity.”
Existing as a disabled person is an expensive investment worsened by the cost of living being on the rise. Scope is an England and Wales-based charity that supports the equality of disabled people in all aspects of their lives; their work is deeply in touch with the contemporary reality of living your life as a disabled person. Scope’s Disability Price Tag Report puts into perspective just how expensive being disabled can be for disabled people living in the UK.
According to Scope’s 2023 Disability Price Tag Report: “On average, disabled households need an additional £975 a month to have the same standard of living as non-disabled households.” All additional expenses happen because of, or as a means of treating symptoms. Many disabled people also have to adapt to flare-ups, i.e. a sudden and temporary symptom increase. Working for exposure isn't an option for many people within the disability community.
To work with disability advocates and writers, potential clients in all sectors must respect people’s time and expertise by compensating them fairly, communicating expectations clearly, and factoring in reasonable adjustments
Instead of working for exposure, many disabled writers dedicate time to personal projects that benefit them. Lydia Wilkins runs a Substack newsletter called The Disabled Feminist. Lydia’s newsletter recently increased the number of posts behind a paywall. This makes it possible for Lydia to prioritise quality content for paid subscribers, enabling the growth of her subscriber list and income generated on Substack.
As an author, podcaster, consultant, and public speaker, Emily Ladau is strict about how she spends her time: “When asked to do work for free, I will say that I don't do things without compensation because this is a job for me.”
When Melissa Parker has pushed back on her clients’ reluctance to pay, her clients have occasionally asked her questions such as: “Don’t you want to raise awareness?" And, “Don’t you want to improve things for the next generation?”
The answer to both these questions is 'yes', but setting boundaries has helped Melissa get paid what she's worth. Confrontations such as these happen but are entirely avoidable. Here's how Ladau recommends potential clients avoid this issue: “Only reach out if you're able to provide compensation. Be upfront about the required effort and the types of stories you seek.”
If you’re unsure about what makes compensation fair, a lot can be learned from Study Hall’s emphasis on advertising opportunities with competitive market rates. When a rate is competitive, it reflects the average rate for someone doing a mutual job in your city or geographic region; corporations typically have higher average rates than small businesses. Another popular approach is the pricing-for-profit strategy, where you set your price based on the cost of living. With this approach, your minimum acceptable rate enables a workload that protects you from burnout while paying your bills.
To work with disability advocates and writers, potential clients in all sectors must respect people’s time and expertise by compensating them fairly, communicating expectations clearly, and factoring in reasonable adjustments. Disabled people are not a monolith, so all expectations and assumptions need to reflect that particular reality.
As a consumer, publicly calling out unethical and unjust representations and treatments of disabled people in events you attend, newspapers and magazines you subscribe to, and in businesses that need your money, has a lot of power. A viral social media post or Google review can go a long way in forcing businesses to do better when their reputation is at stake.
Sometimes, if you offer constructive feedback to the right person about what they did wrong, they will listen and reframe the narrative to something fair and accurate. If you come across a good disabled perspective in something you read, or at an event you attend, tell someone about it who might want to hire a disabled writer or speaker in the future. The more we spread the word about disabled writers doing amazing work, the more we can get concrete proof out there that disabled people have a lot to offer the people who hire them.