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.
Nancy Eiesland’s wonderful book ‘The Disabled God’ includes a disabled person talking about her experience of the pressure to appear ‘normal’ in church:
She [the pastor] said, “Well, Diane, you can’t get in the choir.”
And I said, “Why not?”
And she said, “Well, for one, there’s a step going up to the choir.”
“Yeah,” I said. “You could make a ramp. Or, I could be up there already when the choir marches on.” […]
“Oh, no,” she said. “And plus that, when we all stand, and you’re sitting there, that would look so awful. It would look so uneven. And what about your robe? You can’t wear a big old robe.”
I said, “I could get one made for me.”
She said, “Oh, it just wouldn’t look right.”
– Eiesland, ‘The Disabled God: Towards a Liberatory Theology of Disability’, p.35-36
I’ve given talks at two conferences recently. At one, I talked about normalcy, and the way that disabled people in the churches are caught up in ideas of needing to be ‘normal enough’, and good enough, to attend church – whether that’s about being told what it means to have ‘enough faith’ as a disabled person, or hearing ministers speak about how disabled people will (and must) be healed in heaven. This is almost always covert and subtle – it’s something that isn’t talked about clearly, but runs underneath all of the Church’s theology – in its sermons, in its ‘pastoral’ services for disabled people, in the language that it uses about disabled people… It’s unspoken, and therefore hard to challenge. At the other conference, I talked about ‘imaginative hermeneutics’ – which essentially means telling the lost stories of disabled people, particularly in the Bible. There are many disabled people in the Bible, but they only incredibly rarely have a voice of their own, and they are always, always healed. (What does that mean for the rest of us?) I talked about how re-telling their stories, imaginatively, may be one way for disabled people to reclaim their voices in the churches.
We cannot tell our stories if they are not listening.
And both ideas – challenging normalcy and creating new stories – must involve listening to disabled people. We cannot tell stories of disabled people without their input – that’s been done to disabled people far too much, for far too long. And I would argue that we cannot understand normalcy without the input of disabled people either. The pressure to be ‘normal’ is very difficult to understand from an outside position. So when Wayne Morris and Ron McCloughry explicitly reject the views of disabled people, because they don’t find them useful, they have failed to listen to the disabled community and disability studies – and that’s oppressive.
And we cannot tell our stories if they are not listening.
In particular, church leaders, theologians, and members of the churches must listen to theologians who come from a disability studies context or from within the disabled community. At the moment, they’re mostly not listening. And that’s partly because they know that the churches are responsible for excluding disabled people, and that it needs to get its act together. The Church doesn’t want to hear how it has contributed to oppressive normalcy. But normalcy doesn’t appear out of nowhere. It’s created by the Bible, theology, church practices and traditions. The churches draw on modern society’s ideas about what is ‘normal’ and acceptable, but the churches’ ideas on the subject also predate these – and in some cases, the churches helped to create our modern social discourse of normalcy. No wonder theologians and church representatives get angry or defensive when these ideas of normalcy are brought into the light. But we won’t hide our lights under a bushel!
We cannot tell our stories if they are not listening.
Where can we find examples of disabled people talking about these things? In terms of normalcy, it’s written about all through disability studies writing (which isn’t hard to read, especially if you read disabled people writing about their own experiences). The classics are really good – like Jenny Morris’s ‘Pride Against Prejudice’, Eli Claire’s ‘Exile and Pride’, and Mark Priestley, and Colin Barnes, and Carol Thomas… On the subject of disability and theology/church itself, if you’re up for some quite difficult reading, I love Betcher’s ‘Spirit and the Politics of Disability’, which has been ignored by theologians and disability scholars alike, which is a terrible shame as it’s an amazing book. There’s also the wonderful ‘Deaf Liberation Theology’ by Hannah Lewis, which is very readable and which I think everyone working in churches should read. And anything by the wonderful John Hull, and by Jennie Weiss-Block, and Kathy Black. The reason I think that disabled people should read writing like this, is that we need to be armed and ready to fight back against the inevitable resistance that comes when we call for our stories to be heard. If we can see normalcy, we can challenge it.
Let the light shine in the darkness.
Picture: protesters at today’s ‘Hardest Hit’ march, carrying a sign which is partly written in Braille. It reads “We’re being —- by the government.” Someone has written a translation of the Braille word below it: “shafted”. Photograph copyright Lisa Egan.
Yesterday’s discussion on the BBC’s You and Yours was about disability, cuts and welfare reform, and featured Where’s the Benefit‘s own Bendy Girl. Some contributors’ comments offered a clear example of how attitudes to disability haven’t really changed much since Victorian times – if not before. Some academic research recently published has been talking about how these attitudes might relate to the way that the government and the media are representing disability at the moment. Academic journal articles are expensive if you’re not at a university, but I think research around disability and society is vitally important, and this article’s conclusions are a late-but-appreciated part of academic debate – so here’s a bit of a summary of the article. Continue Reading
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.
Last week a commenter on this blog asked the following question:
“Could you also explain, though, why does your research HAVE to be done by a disabled person…?” Continue Reading
Being stuck between the end of an MA and the beginning of a PhD programme (I hope) is somewhat isolating. I have all sorts of things to say and no one to listen to me. Apart from my long-suffering partner, that is — who, while interested in all things social theory-related, does have a tendency to go away and have a real life. Inconveniently. Continue Reading