“Ethically, I believe that emancipatory work and social justice should be at the heart of everything we are doing – and that goes for people outside and inside the academy.”
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This is the beginning of a series of blog posts on disability and academia, partly based on recent experiences I’ve had as a disabled/neurodivergent attender of academic conferences. Part 2 will be about physical access (oh, and how much fun I’ve had with that over the past year). And there will be a part with recommendations. This part, though, is about my experiences of neurodiversity access at conference. It’s going to be a long one, so I’m dividing it up with headings – readers can jump to the section that they’re most interested in.
Image of a stack of books. Photo by Dayna Bateman (cc).
Image: a stack of books. Photo by Dayna Bateman (cc).
Post inspired by the #phdchat discussion on putting research into plain English.
Emancipatory research should be totally accessible to all, even though that can be difficult to achieve when universities demand styles of writing that are inaccessible to most. I find it particularly hard to write in clear, plain English (mostly because my brain doesn’t like making sense), but that’s no excuse for not trying. So I’m going to try to write updates in accessible language more often. Let me know if I start drifting into academic-speak and making no sense.
In my research, I’m looking at the experiences of disabled Christians. Incredibly, this has not been done before, and the issue is extremely under-considered in churches and religious contexts. It is also rarely discussed in religious studies in academia.
I’m looking at the way Christians and churches respond to disabled people, and to the issue of disability. This involves finding out where Christians get their ideas on disability. I have been listening to disabled church-goers about what church is like for them: their experiences of being included in churches, as well as their experiences of exclusion. Exclusion could means lots of things. It could be about physical access difficulties, attitudes that people find unhelpful, or discrimination because of disability. I have also been listening to church leaders and observing church services.
For context, I looked at theories of disability in Christianity, before I went out to talk to people. I’ve been looking at the history of churches in relation to disability, which is extremely interesting, and again rarely talked about in disability circles. I’m particularly interested in ideas of healing and the body, and how this relates to disabled people’s self-image and identity. For example, in relation to stories in the gospels where Jesus heals people: I want to go know how people in churches use these stories and how they feel about them. These theories will help me understand the categories that Christians use to organise ideas and experiences about disability.
For me, the most important thing about my research is that I want it to be a study that is as emancipatory as possible. Emancipatory disability research is a way of doing research, designed by disability studies academics and disability justice activists, which tries to make sure that disabled people have control of research. In the past (and often still today), academic research on disability was done by people who know nothing about what it’s like to be disabled. Disability studies has tried to change that by making sure that, in research studies, disabled people are treated as the experts on disability, whereas the researcher is only an expert on research. (This gets more complicated when you’re a disabled researcher yourself, as I am, but that’s another story!) This approach to research has proved extremely difficult to do, in practice, but that doesn’t mean we should stop trying. I’m working with a group of disabled Christians who are holding me to account over my work, telling me if I’m asking the right questions and researching the right areas. I’m continually applying for funding to pay everyone involved in the research, as disabled people are far too often asked to give something for nothing. Of course, there’s little funding available, so I have sometimes ended up covering these costs myself. I’m determined to find a way to make this research accountable to disabled people, though, even if that turns out to be an expensive commitment.
This kind of research also involves a principle of ‘giving back’ to the community you’ve researched – in this case, to disabled Christians, and churches. So towards the end of the research, and afterwards, I hope that I’ll be able to offer training to churches in how to make their practice more accessible for disabled people, for example. As a trainer, campaigner and researcher, I hope there will be various things I can do to ‘give back’ to disabled Christians and their churches, and to share my findings widely.
I’m very grateful to all the people who have generously shared their time with me and taken part in the research. Their stories are valuable and I hope not to waste them, but to feed back their experiences to churches and beyond.
I’m @naomi_jacobs on twitter if you would like to ask more about the research, and my academia.edu profile is here.
Inspired by Jennifer Jones‘ liveblogging, I’m putting down my thoughts on the Digital Researcher 2011 conference (twitter tag: #dr11) while experiencing it.
Uncovering the Roof 