“It’s only in the last five years that I’ve felt confident enough to challenge the ableism that I come across.” - An interview with Jen Campbell

Inklusion are delighted to chat to best-selling author and award-winning poet, Jen Campbell. She's written ten books for both adults and children, spanning nonfiction, poetry, short stories and children's books. She runs a book club for TOAST, and has a Youtube channel where she talks about books, the history of fairy tales, and the representation of disfigurement and disability.

Jen is standing in front of a row of bookshelves, smiling at the camera. She has bright red lipstick, and is wearing dark glasses. She wears blue dungarees with a white, squiggly-line pattern, over a navy blue and white stripe, long-sleeve top. She has warm brown eyes, shoulder-length blonde hair and is wearing a leopard-print, green headscarf.

Julie: You regularly talk about stigma against disabled people and common damaging tropes in film and literature - could you tell us a little of the history behind the disabled/visually disfigured 'villain'?

Jen: I was going to say that it’s quite literally biblical (and it is!) but we can also trace it back further, to the performance of Ancient Greek plays with theatre masks. There are a few different tropes that link together: disability as punishment, and disfigurement and disability used as markers for villainy. It’s tangled up with religious messages: ‘if you’re good, you’ll be healed, if not then you won’t be.’ It’s linked with folklore of changelings, and freak show history, too. It’s a metaphor that’s still used extensively in both literature and cinema, and it’s not only harmful but quite frankly boring.

“I’d encourage writers, publishers and producers to think more critically about the ways in which they represent bodily difference, and of course especially advocate for Own Voice storytelling.”

Nuanced storytelling is much more fun, and I’d encourage writers, publishers and producers to think more critically about the ways in which they represent bodily difference, and of course especially advocate for Own Voice storytelling. I wrote about this in more detail for Refinery 29 and Buro 247 and I have many videos on my Youtube channel discussing representation in more detail.

Julie: Is the arts making a move away from this, for example with the BFI refusing to fund films with these damaging tropes? What steps are publishers taking?

Jen: The BFI releasing a statement a few years ago saying that they will no longer be funding films that use the disfigurement-villainy trope is a big step in the right direction, but we’ve still got a long way to go.

“74% of participants said that they felt that popular culture is changing to be more inclusive but that people with visual differences are being left behind. “

A couple of weeks ago, Changing Faces UK released the results of a survey in which 1000 people with visual differences and disfigurements were interviewed. 74% of participants said that they felt that popular culture is changing to be more inclusive but that people with visual differences are being left behind.

Cat Mitchell’s Disability Report also highlights how far the publishing industry has to go, not only to be inclusive in the books it publishes but also in how it treats disabled employees.

Julie: How do we remove the onus from disabled people to be the ones constantly fighting the fight for inclusion in the literature sector?

Jen: That’s a tough one. These days, part of my job is talking with publishers about representation and accessibility, the importance of Own Voices work and sensitivity reading on occasion. I’m a disabled person myself, and I would much rather use my energy to write books (which is my main job) but I want things to change. I of course don’t like that the onus is on us, and it is exhausting to repeatedly discuss what can be emotionally draining topics. For nondisabled people, discussing representation is at best an interesting point of discussion; for us, it’s real life. So, as well as creating my own work and speaking with publishers, I also do grassroots work with disabled writers, and I go into schools to talk about disability as well. These two things help to balance out the more frustrating parts. This work is hard but I hope that it brings about change, and that (along with excellent work by other people, like yourselves) means that we can move away from carrying this on our own.

Julie: We recently spoke to Elle McNicoll who believes that the industry is missing gems and that disabled writers and marginalised writers tell the best stories - do you agree?

Jen: I do think that writers are being missed, yes — or, rather, I know it. There are many examples I could quote from my own experience; things I’ve been told at editorial meetings about the ‘palatability’ of disability, how publishing perceives the market for disabled stories etc.

“I didn’t want to write about disability myself for a long time, because I knew that the response to the subject from the world of publishing was not positive; I received so much pushback against a book proposal with a disabled protagonist because his disability was not part of the storyline.”

I didn’t want to write about disability myself for a long time, because I knew that the response to the subject from the world of publishing was not positive; I received so much pushback against a book proposal with a disabled protagonist because his disability was not part of the storyline. The response was ‘well, why is he like that? What happened to him?’ but the point was that the reader didn’t need to know. This baffled people. Incidental representation of disability is just as important as stories about disability.

“I’ve been working in the publishing industry for fifteen years; I’m now a bestselling author, with ten books published, and it’s only in the last five years that I’ve felt confident enough to challenge the ableism that I come across.”

I’ve been working in the publishing industry for fifteen years; I’m now a bestselling author, with ten books published, and it’s only in the last five years that I’ve felt confident enough to challenge the ableism that I come across. Even as I’m typing this, there’s a voice in my head shouting ‘don’t say that; you’ll sound like a difficult person!’ And I shouldn’t have to say that I’m not; I shouldn’t have to say that what I mean is that I politely point out certain things, and push for change, but it’s always the case that when you’re part of a minority group society makes you think you should just smile, put up with it, and be quiet, so that people like you more. But that’s a short term gain, and to be honest I’m not even sure it’s really a gain at all.

Julie: Do you need to ask for access requirements/do organisers volunteer that information before you ask?

Jen: Aside from disability organisations, I think there has only been one occasion where someone asked me if I had any access requirements before an event, or before working with them as a freelancer. More recently, as someone who has been shielding, I have had to push for online content, and still am asked to explain why I can’t go into schools in person or do in-person events at festivals, despite offering many alternative solutions myself.

“As for access for readers who come to my events (in “normal” times) I always have to ask about access for wheelchair users, and most organisers are surprised when I do, as I’m not a wheelchair user myself. I wish this was normalised.”

As for access for readers who come to my events (in “normal” times) I always have to ask about access for wheelchair users, and most organisers are surprised when I do, as I’m not a wheelchair user myself. I wish this was normalised. I want to make sure that this information is available to anyone who wants to attend, and I’ll make sure that’s on my website and will request the bookshop or festival puts it on theirs, too, along with any streaming information, and whether captions and/or BSL are part of the event. I also request transcripts for podcasts to be available if I’m taking part. These are all things that should be happening anyway. Hopefully guides like yours will help move things forward.

Julie: If you could sum it up in a nutshell, what would you want the literature sector to know? 

Jen: It’s impossible to sum it up in a nutshell, so instead I’ll just say that I would encourage the industry to please sit with these topics, to listen and to learn.