I’m delighted that my article has now been published in the Journal of Disability and Religion: ‘Speaking with Us, Not for Us: Neurodiversity, Theology and Justice.’ As the title suggests, it’s about speaking for ourselves, as neurodivergent Christians. Other disabled Christians might find the themes relevant, too.
If you can’t access the article at the link above, it can also be read here.
Accessible Summaries of Research
Tanya’s summary got me thinking. I often write that theology needs to be accessible, so that disabled and neurodivergent people can read and speak about our own experiences of faith. This particular article is about how important it is for neurodivergent Christians to speak for ourselves. But somehow, in my rush to get this article ready for the journal, I forgot about the (neurodivergent and disabled) community it’s about, and about finding ways to tell you what’s in this article.
In disability studies, researchers have written that research articles should be more accessible, with summaries available in plain English – even though it can be hard to persuade journal editors to publish accessible summaries. They’re right. Next time, I’ll work harder to get this right. I’ll write a (more detailed) plain English summary of my next article, and I’ll ask journal editors to publish it with the article. If they can’t do that, I’ll make the summary available here on my website.
Barriers to Research
There’s another, related problem with this article. It’s not ‘open access.’ It’s behind a paywall. Academic journals charge fees to researchers, to make research articles open to all. As an independent researcher, I can’t afford those fees. (I doubt I’m the only one. Because of educational barriers, disabled people are less likely to be employed by universities that could cover the fees.) The alternative is that you have to pay to read it. This is a systemic problem. It’s another barrier to joining the conversation about us, for disabled and neurodivergent people.
(As you can see from the link above, I am allowed to publish the text of the article here, on my own website. But that doesn’t make it widely available or easy to find.)
When I realised I couldn’t afford to make the article open to everyone, it sparked a discussion between myself, Krysia Waldock and a few others. We talked about how academic research should be available to everyone who wants to read it. It’s just not a priority for academia. Over the summer, I went to several conferences with sessions about academic publishing. There wasn’t much discussion in those sessions about the communities we do research with, and why it’s important that you get to read what we write.
Decades ago, disability studies pioneer Colin Barnes wrote, “the more
sophisticated and, in most cases, the more inaccessible an academic’s work is the more highly rated it is by the academic community” (1996, 108). After years of emancipatory research in disability studies, Barnes is still right. The barriers to accessing knowledge about us are a mountain we still have to climb.
Doing More to Make Research Accessible
In my research, disabled Christians said they couldn’t easily join the conversation about disability and faith. That’s why I want my research to be for you – disabled Christians, and allies in churches and society. That’s why Emily and I wrote At the Gates for a general audience, rather than writing an academic book, which would have been expensive to buy and less accessible to read. The Torch Trust has helped us to make the book available in accessible versions. We’ve nearly finished an audiobook version of the book, thanks to generous crowdfunding. (People seriously came through for us with donations!) And we try to share the research at grassroots events, where it might reach disabled Christians and church leaders (we’re just back from an awesome Greenbelt). It’s not enough, but we want to try.
I still get it wrong all the time. I forget to write accessible summaries of complicated articles, for example. I’d love to be able to pay for proper Easy Read summaries of what I write, and maybe one day I’ll get funding for that. In the meantime, wonderful friends like Tanya write summaries when I’ve forgotten to, or when I’m too exhausted to write them myself. That’s solidarity.
So I’m going to commit to stepping up more for this community, when it comes to sharing my research. I want to publish more ‘open access’ articles – available to all. I’m excited to have been published in the Journal of Disability and Religion, which shares excellent research in theology of disability. But I also want to support grassroots journals, like the Canadian Journal of Theology, Mental Health and Disability, and other publications working to make research more accessible and open. As for books… speaking of grassroots publishers… watch this space.
And I’ll be working on those accessible summaries of articles.
I don’t know what kind of research I’ll do next, if I’m even able to do any (that’s another story). But I hope I’ll find ways to keep making sure that my research reaches the community. Because it’s about you, so it should be for you.