The Missing People

Picture of empty church. By J.Guffogg & J.Hannan-Briggs - CC.

Picture of empty church. By J.Guffogg & J.Hannan-Briggs – CC.

There’s a missing group of people in my research into disability and churches, so far. It’s Christians with mental health problems.

I know from both existing research and personal/second-hand experience that churches can have varying responses to people experiencing mental health problems. There’s already some research and writing on the subject, but most of the academic research focuses on what churches are doing and comes from a medical ‘care’ perspective (or a ‘recovery’ perspective). I’d really like to contribute to better understanding of people’s lived experiences – of what’s really going on for Christians with mental health problems. I hope this will be helpful for them, and for churches.

I would love to hear from more people with mental health problems on the issue. It’s not a problem if you don’t consider yourself disabled, as such. My research will be looking for the different issues faced by different groups of people, as well as looking for overall themes across all participants (if those exist).

The other two groups I’m short of is charismatic/Pentecostal Christians, and people who no longer attend church. Do pass on the information about the research to anyone you know who might be interested and falls into these groups. Thank you!

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Calling for a real #fullaccesschurch

Yesterday, the fantastic user-led organisation Disability and Jesus held a twitter action to encourage churches to think more about access for disabled people. The twitter tag was #fullaccesschurch – you can still go there are see the exciting, imaginative and involved discussions we had there about disability access to churches.

I ended up having a bit of a discussion with someone who said their church couldn’t afford access adaptations. Meanwhile, the wonderful Anne Memmot has written about focusing on access for those with other impairments, rather than letting the expensive ones distract us from doing anything. I understand both these perspectives. But I want to present a different perspective, from my vantage point as someone who no longer attends church, largely because I got sick of the terrible access everywhere I went, and having to fight for my right to get in through almost every church door I encountered.

I’ve been into some very well-off churches. One London church comes to mind where they installed a full cafe in the basement, with no mobility access to it, and began to hold all their Bible study and social groups there. Hint: there would have been no cost attached to holding a few groups in the wheelchair-accessible sanctuary and having some basic tea and coffee facilities upstairs. But they hadn’t thought of this – because it wasn’t important to them.

The official number of wheelchair users in the UK is 1.2 million (according to statistics collected in 2000 – the number is likely to have risen by now, with our ageing population). But that doesn’t include all the hundreds of thousands of part-time wheelchair users, electric scooter users, crutch and stick users, and many others with restricted mobility who benefit from mobility adaptations. I suspect the number of mobility-impaired people is actually much, much higher  – especially as other statistics show that 27% of young disabled people have a disability relating to mobility. That’s a lot of us disabled folks who are moblity-impaired in some way. Add older people, of whom a huge number use sticks, scooters etc, and you have a lot of people who can benefit from relatively cheap portable ramps and some thought put into where groups are held.

And now think about all the other people who benefit from mobility-friendly environments. Parents with children, including developmentally delayed older children. Older people who aren’t ready to define as having mobility impairments, but still appreciate flat access. People with other impairments, such as visual impairments, who can fall on badly-designed steps.

Many adaptations cost almost nothing – as Anne Memmot says. This is important for churches to know and think about. There are things they can do that will help a lot of people, for not a great deal of money – and sometimes for free.

But we have to face the fact that some adaptations do have a cost attached. Ramps may cost a few hundred pounds, more if they’re architecturally tricky. Hearing-aid loops may be about £1000 or a little more. The right kind of lighting for visually impaired and autistic people will have some cost attached. Basic toilet adaptations like grip-handles are not unaffordable but also not free. Large-print or easy-read Bibles are worthwhile for many congregations but will cost some money.

I don’t accept the argument that churches can’t afford adaptations. While not all churches are rich, it’s interesting that they can usually afford what’s important to them. At a group discussion I was at yesterday, a father of a wheelchair-using child spoke about the cost issue. “Cost?” he said. “You want to talk about cost? Jesus died for us!” The fact that churches don’t balk at putting in expensive cafe facilities, but do at disability access adaptations, shows what they value. And that’s often the comfort of the non-disabled people of God over the access of another part of the Body.

I, for one, am tired of the resistant tone and serious faces attached whenever I bring up access – especially mobility access. Stop talking to me about it as though I’m asking too much. If you woke up tomorrow and could no longer get into your local church, along with millions of other people who suddenly couldn’t get into their local churches, the world would hear about it very quickly. But disabled people, including mobility-impaired people, are always accused of asking too much of the churches. I don’t believe that we are. I believe we’re asking for our civil rights under British law, our human rights under European law, and justice from the people of God.

When people say “Access isn’t all about wheelchairs,” they’re absolutely right. We need to talk about all the other ways that people can be included. And as Anne Memmot says, that can be achieved for very little money. Some of it is even free. But not all of it will be free. So I’ll keep fighting for a truly #fullaccesschurch, with full access for ALL.

Whose ministry is your church missing out on, all because they can’t get in through the door or up to the pulpit?

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Including Everyone in my Research

Although I can’t include absolutely everyone in my research, I’m making an attempt to make the research accessible to as many people as possible. I’m now moving away from discussion groups. Instead, I’m mainly interviewing people one-to-one, either in person or online. Here’s why.

Discussion groups have been a success for some people. The most frequent comment I’ve had, at the end of groups or in emails afterwards, is that people found it very useful to meet other people in similar situations to them – other disabled/chronically ill Christians. This has led to some great discussions, where people have felt comfortable enough to talk about their experiences of church and disability in groups. (We’ve also had some interesting small groups meeting over Skype.)

But there are people who would not be able to join discussion groups. Some people can’t travel, for disability or time/distance reasons, and people don’t always have access to reliable internet for Skype groups. Some participants, with impairments such as autism or mental health difficulties, would find meeting in groups difficult. Some people would just rather talk one-to-one, when it comes to a sensitive subject like experiences of disability/illness and churches. Some people’s experiences are painful, or involve subjects that are difficult to talk about in front of strangers.

I’m now branching out with my research methods, trying to reach people who haven’t been able to join groups, for whatever reason. I’ve set up a research discussion messageboard – if you’ve signed a consent form, you’re welcome to join it! This will allow people to think more about what we discussed face-to-face, and to expand on it, when they’re ready. I’m also meeting one-to-one with more and more people. (And that’s before we start talking about accessible methods for people with learning difficulties.)

Wherever you are, there will be a way I can help you to take part. Don’t worry if discussion groups aren’t for you. I can travel to where you are, or we can meet one-to-one on Skype, or we can talk over email. Get in touch using the web form below, and we can talk about the best way to include YOU.

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Former Christian/ex-Christian and disabled? I’d love to hear from you

In my interviews about disability and Christianity so far, one important group is very under-represented: people who used to be Christians, but aren’t anymore. When looking at the way churches treat disabled people, those who haven’t stayed are just as important as those who have – and each group is likely to have quite different views.

If YOU are disabled/have a chronic illness and used to be a Christian, but you left church  (for any reason), I’d love to hear from you. Even if you no longer consider yourself a Christian at all, but have relevant experiences to share from when you were, I’d be keen to hear your story. The full FAQ about my research is here. Do get in touch, through the email form below, or via the Facebook page.

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What does real welcome look like?

Image: two people cupping their hands over their ears as though struggling to hear. Image from Manchester Diocese website.

Image: two people cupping their hands over their ears as though struggling to hear. Image from Manchester Diocese website.

Last week I attended a meeting at the Diocese of Manchester on ‘welcome and belonging’ for disabled people in the Church of England. Titled ‘We’ve Been Expecting You: Disability and the Church’, it was a half-day event to launch a report on disability and the diocese that was produced from a 2012 event on disability.

John Gillibrand was an excellent keynote speaker. He began by acknowledging that views on disability can be controversial and multifaceted — from the issue of who gets to speak for whom, to the social model vs other ways of approaching disability. John’s son is autistic and is currently in residential care. John’s story was fascinating. He talked about the stress and joys of being a vicar with a disabled child, and some of the other things that he and his family experienced while his son was growing up. He also talked about the way the church could and should be responding to disabled members. While I didn’t agree with everything he said, and his focus on care (rather than equality) worried me a bit, I did enjoy his talk very much, and it was good to hear about the experience of a church leader encountering disability in his family and congregation.

I raised a question at the end of John’s talk: If we focus on care, rather than equality, will this discourage the church from recognising the ministry of disabled people, and from ordaining them as ministers? John didn’t quite answer the question — he spoke about the discrimination experienced by disabled people applying for ordination, but not about whether ideologies towards disabled church members could affect this. But then, there wasn’t much time to discuss this or the many other issues that arose from his talk.

We then moved on to discussing the report that was being launched on the day, in small groups. Reflections from the floor included the need for things to move on much faster — for example, full level access to churches was proposed in the report, but the Diocese has not reported that this has been achieved. Disabled delegates talked about the difficulties they face in their churches, from a lack of BSL* translation and equipment for Deaf people, to the need for clergy to be trained around issues of disability, or at least to have thought about disability at some point in their training.

It was a very positive day, but the message from those attending was clear. The Church of England has a responsibility, not just to talk about access and inclusion, but to make it happen. There were access issues on the day that illustrated this point: while the building used was very accessible for those with mobility difficulties, there was no hearing aid loop, no BSL signing provided, and the structure of the meeting did not make it easy for neurodivergent attendees. The Church of England is clearly working hard to find out how to make their work and services more accessible to disabled people, but the general feeling at the meeting, from disabled and non-disabled delegates alike, is that it’s time they stopped talking and put ideas into practice.

*British Sign Language

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Christian and Disabled? Join the research!

The ‘Uncovering the Roof’ research project into Christianity and disability is still looking for participants. I’m still organising research discussion groups, and you can still get involved in those. EDIT: I’m also now meeting people one-to-one, and can travel to meet you in a place convenient for you. Email me using the form below if you’d like to talk about getting involved, or if you have any questions. Or visit the Facebook page about the project, where you can send me a message.

People with a range of impairments or long-term conditions are very welcome to take part. This could include those with mental health problems, people on the autistic spectrum, people with learning difficulties, anyone with a long-term condition (such as MS or fibromyalgia), and people in situations more traditionally thought of as ‘disability’, such as those with sight problems, hearing problems or mobility difficulties.

I’m currently particularly looking for a few specific groups: people who no longer go to church, older people, men, and people from BME backgrounds*. That’s because I’m trying make the groups more representative of Christians in the UK today. But people who don’t fit into these categories, are still welcome to get involved! And I’m always keen to talk to people with invisible conditions, as well as those affected by other types of impairment/disability.

Full FAQ is here. So far, the groups have been talking about the negative and positive experiences they’ve had in churches; what inclusion in church life would look like for them; what kinds of barriers get in the way of people’s involvement in church (from physical barriers, to aspects of church culture like standing for hymns or closing eyes to pray); the way theology and ideas about disability are expressed in church, e.g. in sermons/talks, and how people feel about that. Among other things! The discussions have been fascinating, and I’m looking forward to sharing the thoughts and ideas with churches. The more people get involved, the more we’ll be able to do this.

I hope to hear from you!

*black and minority ethnic communities

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Barriers to Research Participation (OR You Want How Much For Your Accessible Meeting Room??)

Meeting room

Image: A rather inaccessible meeting room. Martin Deutsch, Creative Commons licence, Flickr.

It’s been at least 30 years since we first started talking about emancipatory disability research, in the disability studies arena. As I start my fieldwork, I’ve been appalled at how difficult it is even to make basic arrangements that will allow disabled people to be involved. You can’t have a participatory research project if disabled people can’t participate.

Of course it’s always logistically difficult organising research. But now try to imagine a small PhD research project that specifically needs disabled participants. With an extremely limited research budget, but a commitment to good accessibility, with all the costs that entails. And a disabled researcher who has various difficulties with making arrangements.

I’ve just had an email from a certain prominent religious-community venue (run by a religious group which has a stated commitment to social justice), offering me a non-fully-accessible room for a price that is well outside my range, and suggesting that I change my (accessibility) requirements if I want it for less. And that’s a community space. In other locations, my only option has been hotels, which are mostly far outside of my budget. This is the situation for researchers attempting to enable good participation for disabled people. I’m approaching despairing point – though I probably should have seen this coming. (I’ve sent the religious group in question a rather blunt email. This research project is making me braver…!)

So many things go into accessibility*, when it comes to planning groups or events like this. A few examples of what might be necessary: Continue reading

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Now looking for participants!

uncoveringroof

Image: steps up to a church door. By Charles Clegg. Creative Commons licence, Flickr.

Update, 18/3/15: We’re still looking for participants. See latest post for more details!

I’m looking for people who are disabled (or have long-term illnesses or learning difficulties), who attend churches, or used to. I’m hoping to explore people’s stories of disability and Christianity with them, with the aim of finding out more about the situation for disabled Christians today, and being able to share this knowledge with churches in the future.

Under the ‘read more’ link, you can find an FAQ with details about how you can get involved, what you’re committing to, and how we’ll try to make it possible for you to take part. I’d love to hear from you if you think you might fit the categories I’ve outlined below. Please have a look at the FAQ, and if you’re interested, get in touch.

Continue reading

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Fighting to Protect University Mental Health/Counselling Services

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Image: students at a student support centre. Picture by University of Nottingham, Creative Commons, flickr.

I have an article up at the PhDisabled blog, about the media debate currently going over student mental health services in the UK and how they are overstretched and underfunded.

Continue reading
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Balancing Responsibilities: Community and University

14633238509_64ac14da5c_zImage: the Lego Research Institute. Adorable lego researchers with a dinosaur, a microscope, a telescope and other research equipment. Image from the Lego Shop.

In the beginning, I was over-ambitious. When I wrote this post, I firmly believed that my research should be shaped by disabled people who are involved with churches, rather than just by me. I wanted to do a two-stage research project, beginning by talking to as many disabled Christians as possible, and asking them to shape the second stage of the research with me. I hoped that they could be my co-researchers, or at least very active participants, rather than just research ‘subjects’. Continue reading

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Listening to Disabled People

'See the Light' by Vinoth Chandar - creative commons. Light shines through a door into the darkness.Image: ‘See the Light’ by Vinoth Chandar – Flickr Creative Commons. Light shines through a door into the darkness.

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.

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Gender and Disability: Asking Difficult Questions

I’ll be presenting at the ‘Gender and Disability: Asking Difficult Questions‘ conference in May. I’ll be talking about disability and women in the Bible, and how we can reclaim their stories.

The conference is at the University of Sheffield on the 10th May. If you’re interested, the website is here, with more details on what, where and when. Hope to see you there!

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Inclusive Church: Disability

Last month I was able to attend the Inclusive Church one-day conference on disability, and I thought readers of this blog might like to hear about it. Continue reading

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The Relevance of the Bible (To Disabled People)

Image of a Bible

Image: a picture of a Bible

Image: A picture of a Bible. Photo by Camille Sauvager (CC).

Why research what the Bible says about disability? Isn’t it irrelevant to society by now? Aren’t there more important things to research? Why bother?

My research does not come from a specifically Christian perspective. I hope to be working with a partnership group of disabled Christians, and I expect (and hope) that their Christian ‘take’ on things will come through the research. But my views on Christianity, specifically the Bible, are sociological. I’m interested in the effects that religion has on society, and vice versa. And, perhaps most importantly to me, I’m interested in how the Bible has affected society – especially its effects on disabled people. Continue reading

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Theory in Practice: Disability studies journal article about recent government and media representations of disability

Poster: we're being [shafted] by the governmentPicture: 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.

‘The language of shirkers and scroungers?’ Talking about illness, disability and coalition welfare reform – Disability & Society.

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

Posted in disability, disability theory, emancipatory research, research | Tagged , , , , , , , , , , , | 2 Comments