Neuroqueering Academia! Conference Accessibility – Pt 1: Neurodiversity

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.

Neuro-what-now?

For readers who don’t know: I have Asperger’s Syndrome, dyspraxia and dyslexia. These are types of cognitive-functioning conditions that are often grouped under the umbrella heading of ‘neurodiversity’. We often prefer this label to medical labels, as it was chosen by us rather than by doctors, and we own it for ourselves.

There is a movement of neurodivergent people out there. We think differently and approach life differently from other people, and we are disabled by having to interact with society in ways that are very difficult for us. There are things that can be done to make life easier for us. Not everyone wants to put in the effort of doing these things… and that’s where things start to go wrong.

Neuroqueering Academia?

Let me say again something that I said on twitter yesterday. I find being in academia, as a disabled and neurodivergent person, to be an oppressive experience. That doesn’t mean it’s all bad. I love doing my PhD. It’s exciting and rewarding and I feel like I’m researching something that urgently needs researching. But it does mean that, on a daily basis, I experience disablism, encounter social and physical barriers, meet with abuse, and have experiences that can be deeply traumatic – specifically because I am disabled.

This is what the social model means when it talks about oppression imposed on top of impairment. But it’s also not unrelated to impairment. When conferences and other academic events are inaccessible, oppressive or traumatic for me, the psychosocial effects are lasting. It’s not just a case of “Oh well, that conference didn’t work for me.” It makes me wonder – very seriously – if I’m cut out for academia at all. Because oppression likes to stay invisible and blame the victim, I feel like it’s all my fault.

And it makes it worse when people do the thing that they always do with neurodivergent people who ‘pass’ as neuroypical: telling us it’s not that bad and that they feel the same. “I hate networking too!” OK, well that means I’ve failed in explaining the experience of autism-in-academia to you. So here I’m trying, again, to explain what is wrong with standard academic conferences for me. (I cannot speak for other neurodivergent people – although some of my experiences will not be uncommon.)

My friend Laurine has done some fantastic writing on this subject today. I’m going to approach this a bit differently, talking about my specific issues and how they’ve been supported… or not. The ‘not’ being a little bit more common. I’m hoping that this will paint a picture of academic life for one neurodivergent person (who also has physical impairments – but I’ll focus more on those in Pt 2 or 3).

One of the talks yesterday was on ‘neuroqueering’ academia – by which the speaker meant challenging, disrupting and transforming the academic experience. It was delivered at the end of a long day of the standard three-papers-per-hour-followed-by-awkward-coffee structure. The irony did not go unnoticed. We should be practicing what we theorise.

A Conference Experience

Nonetheless, there was a lot that was fantastic about the conference I attended yesterday, a Mad Studies conference on making connections between the survivors’ movement and the neurodiversity movement. The organisers had really planned things well. They had done a lot of what Laurine has recommended in her post – things that most conferences don’t bother with. Maps, schedules and details were offered in advance. A lovely quiet room was provided. (With sofas where I could lie down! No need for my usual curl-up-on-the-floor-in-the-cafeteria experience!) They had thought about lighting, noise and other sensory issues. There was a lot that they got right.

So I do hope they don’t read this as criticism. It’s intended as constructive feedback. An attempt to communicate the experiences of conferences like this, from the viewpoint of an autistic delegate.

Getting There: Cost, Travel, Energy

I spent about £120 to attend the conference, between train fares and hotel costs. I am a largely-unfunded PhD student (for reasons not unconnected to my impairments, although that’s a more complex issue that I’ll explain another time) and at the moment I mostly live on my DLA and savings. Travel is also very difficult for me. On this occasion I also couldn’t afford to bring a support worker, because I have nearly run out of Disabled Students’ Allowance funding for the year (my needs are expensive). But I really wanted to go to this conference. So I found the money and hoped for the best for the journey. (It helped, a lot, that the conference itself was free. Thank you so much to the organisers for that!) The decision to go to a conference like this, in another part of the country, is a big one for me.

So there I was, the day before yesterday, travelling on the train to Lancaster alone and staying in a hotel room alone (things that really aren’t recommended for me!) because I was so excited about this conference. Connections between these diverse but interrelated movements? This was going to be history in the making.

I got a bus from my hotel to campus, to save money on taxis. Using buses is challenging for me, as I can very easily get on the wrong one. Again, it helped that the conference organisers had thought about this, and had suggested departure points and bus numbers. I managed to end up going in the right direction, after some struggle finding a wheelchair-accessible bus. So far, so good – although by this point I was starting to get very tired. At 9am.

On Campus: Missing the Mark

Here’s the most ridiculous story of the day. (Be nice – I’m admitting my neurodivergent embarassments here.) I got off the bus about one minute’s walk from the building where the conference was to be held. I didn’t know it was there. I can’t read maps (no, really, not at all). And because I can’t do acronyms, I didn’t know that ‘FASS building’ was the same thing as ‘Faculty of Arts and Social Sciences building’. So I missed it, and wandered for about an hour around a big, strange campus. In the chilly rain. Fortunately I was on my scooter, rather than using crutches. But that didn’t help with the tiredness and emotional-ness that I was already dealing with when I finally worked out what building I was meant to be in, and found it.

Networking Nightmares: Are You Sure You ‘Understand’?

When I arrived, no one was there to meet me and tell me what I was meant to do. I wandered into the room where the main event was to be held and sat around for a while. Eventually I managed to overhear that people were having coffee in the next room. A detail on the programme like ‘Registration – tea and coffee in [Room A]’ would very much have helped here. (I need a lot of details in order to cope with life.)

So-called ‘networking’ was probably the worst trauma of the day, for me. This is the point at which someone is going to say “Everyone hates networking.” But no, you don’t hate it in the way that many autistic people do. You weren’t sitting there, like me, considering just walking out and spending another hour in the rain finding the bus stop and going home, because you didn’t know anyone, didn’t know who you could approach or how to approach them, and were about to have a panic attack. You didn’t regularly attempt to insert yourself into a conversation and find yourself ignored because you don’t actually know how to enter a conversation with strangers. You probably didn’t thank the wrong person for their presentation (due to your ‘face blindness’ making you think that the first person with long hair that you saw was the presenter), and then have to deal with the crushing embarrassment of appearing utterly stupid at an academic conference that’s all about brain power and looking clever.

You didn’t also have to combine that with negotiating small spaces in a mobility scooter, having to struggle to make and carry tea, and get past people standing in the way, and squeeze between chairs in the overly crowded room setup. Later, you didn’t find out you’d left your scooter in a place that was inconvenient for someone else, while you were trying to recover in the quiet room from all the stress, and feel obligated to go back into the proceedings and move it. (No blame attached to the people who needed me to move it! It was just stress on top of stress, because I have an issue with not wanting to upset or distress anyone else. A clear place for mobility aids might have helped there.)

A Neurodivergent Conference: Asking Too Much?

I’m going to say something now that may get me in trouble (if everything I’ve said up to now hasn’t already!) The higher the proportion of nerodivergent people at an event, the more disabled I am. My needs very often clash with those of other neurodivergent people. For example, there are people who talk a lot during presentations and make a lot of noise. This is beyond their control. But it is incredibly difficult for me, as I need silence to concentrate, and am easily triggered into panic attacks by noise. (I should have considered where I was sitting a bit more carefully!) Socialising around other neurodivergent people is also very difficult. Many of them don’t want to initiate conversations with people they don’t know – and why should they have to, if that’s difficult for them? My needs don’t outweigh theirs. This is the kind of thing I meant when I said, in a comment during the final discussion, that it is difficult to make conferences accessible to all neurodivergent people. Really difficult.

But I firmly believe that that doesn’t make it impossible. I was discouraged on the way home, thinking about whether I simply ask too much of academia and academic conferences. Should I suppress my difficulties, continue to ‘pass’ as normal? And just leave academia when that gets too much?

I think the answer is that no, I shouldn’t. It’s not just about me. We need to ‘neuroqueer’ academia for others. As Laurine G-M said in a conference on ‘passing’ last week – passing as ‘normal’ is unbelievably difficult and exhausting in ways that neurotypical people can’t see. And it’s a vicious cycle. It creates expectations (“but you don’t seem autistic” expectations) that mean you are expected to continue passing, and that creates more stress and exhaustion, and ever more expectation. Eventually, it becomes too much, and perhaps we leave. Why destroy yourself for a career?

But it shouldn’t be like this. I refuse to live in a world where accessibility is too high a demand to make. It is possible. Academia can become more accessible. I am determined to help it to do that, as long as I have the strength to stay.

As A Speaker: Pure Terror

I didn’t speak at this conference. I did speak at the conference I was at last week, where Laurine G-M also spoke. So here are some thoughts on speaking at conferences.

I faced my worst nightmare last week after presenting.

Let me say first: giving presentations is an access nightmare for me. I have had meltdowns after giving some papers and refused to give them ever again in that environment. (To name and shame: the Biblical Studies department at Sheffield, at which I had such a horrendous, confrontational experience with questions after a (very good) paper – with no backup from the teachers – that I refused to give presentations there again, despite it being a requirement of the PhD there.) This is not your usual discomfort with presentations and papers. This is pure terror. Yet, I somehow continue. But it takes a lot out of me.

I especially can’t cope with questions after papers. I can prepare and prepare and prepare for presentations. I can’t prepare for questions. And often, I can’t think on my feet. That’s a disability issue. My brain needs a lot of time to process things. (Sometimes I ask for questions to be sent to me by email, rather than asked in person at the conference.) At last week’s conference, instead of papers-followed-by-questions (my preferred format), three of us gave our papers and then there was a general Q&A. I deliver papers through pure adrenaline. After that subsides, I become very tired and don’t want to talk or think anymore for a while. Let me answer questions while I’m still in paper-delivering-mode, not afterwards when I’ve lost the ability to think.

Worst of all, the chair decided to collect all the questions at once and get us to answer afterwards. I had not been warned about this, and no one was taking notes for me (I can’t write by hand) so I couldn’t write down reminders of each question – not that they’d really have helped. I tried to answer the first question and was shut down while they collected 10 more. “I’m going to have trouble remembering them,” I tried to protest – but no one understood this as an accessibility issue. I could barely remember any of the questions, and ended up saying very little (and probably looking stupid, once again).

Please, never ever do this – at least, not without warning. All sorts of people will have difficulty remembering ten questions collected at once. Especially neurodivergent people or those with learning difficulties. That is an access nightmare. Allow one question at a time, no matter how much it may seem to slow down proceedings.

Queer(y)ing the Proceedings

At the end of yesterday’s conference, I tried to make an intial comment (that I hoped might be part of an ongoing discussion) about conference structures. I queried why the conference format had been so academic-standard, and whether it could be re-thought (neuroqueered!) for future events. I also mentioned networking (although I’m surprised that that’s the part people have focused on in their replies to me on twitter, and not the three-papers-an-hour-from-the-front thing). I received a frustrated response from one of the organisers. While I understand that criticism can seem negative, I think it’s important that organisers recognise when people are trying to help make things better. (Here is my offer to help! I’m no stranger to conference organising – I’m currently helping to organise a major Church of England conference on disability – and could give a lot of advice on this stuff. As could many others.) Other organisers were much more positive about my feedback, though. But I do apologise if my comment came out as a criticism. Sometimes what I say isn’t quite what I mean to say. This post series is my attempt to be a bit clearer!

We All Have To Neuroqueer Conferences

On a more personal note, I became very distressed when someone behind me reacted negatively when I put my hand up to make that comment. I hadn’t spoken once all day, but some people know that I can be outspoken and engaged at conferences where I feel comfortable. It was hard for me to make any contribution at this conference, and I will be further discouraged from contributing now. It is so very important that delegates are asked to respect others in their behaviour, and even to consider putting their own quirks aside where they may impact others, if they possibly can. This is part of neuroqueering academia. It’s not just about making it work for us individually. It’s about making it work for everyone. It is not just about the organisers. We, too, contribute to accessibility.

By this point I had had enough. I left early and spent two hours at the station waiting for my train. I then met a couple of nice people from the conference, one of whom had seen me tweeting, and we talked about that. It was interaction that had begun in an online forum and was continued into face-to-face conversation. It was my best ‘networking’ experience of the day! This gives me ideas for pre-conference preparation online, that could perhaps enable better interaction among some participants. But I need to give that more thought, so it will come up in my recommendations post.

There will be a Part 2 (and probably Part 3!) to this series. In a follow-up post, I’ll be making suggestions for ways to make conferences more accessible to neurodivergent people, particularly me! (Since, again, I can only really talk about myself in the end.) In the meantime, Laurine has written a fantastic list of guidelines for conference organisers who want to make things more accessible for autistic people. Sarah Carr has also found this lovely list, that applies to many neurodivergent people as well as to introverts. I’d like to thank the organisers of yesterday’s conference for doing most of these things! It really was one of the best conferences I’ve been to. I haven’t even touched on the amazing papers and disussions that came out of yesterday conferences. It was, as I suspected, history in the making. I’d love to be involved with more of what comes out of this fledgling field of Mad Studies.

By the way, I mostly survived yesterday by live tweeting. If you’re interested in the debates and discussions that went on yesterday, you might find the #madstudies hashtag interesting. Enjoy!

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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.

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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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