The Blogging Graduate Student


Photo: Newspaper on a tube seat. Headline reads “20,000 a day start a blog”. CC Annie Mole, flickr.

Should postgraduate researchers blog?

At the American Academy of Religion/Society of Biblical Literature conference last week, a panel reportedly concluded that postgraduate students shouldn’t blog. It is dangerous to your copyright, to your chances of a job, and to the time you have to spend on work, they apparently lectured.

There are three reasons why I’m annoyed by this ‘wisdom’ handed down from on high.

1. A Blogging Disabled Graduate Student

The irony is not lost on me, that I could never have been at the AAR conference in person. Travelling to conferences as a disabled student is getting more and more difficult, and I think I now I no longer have enough support or access to enough funding that I could safely and semi-accessibly go that far abroad for that long.

And so, I blog so that I can share my developing ideas in a forum that is actually accessible to me. Being a disabled postgraduate student in today’s academia is so much of a struggle (see below). Don’t limit my access to the one place where I can equitably present my thoughts, my theories, my reactions to my life in academia, my struggles with disablism and with the hegemony of normalcy in the academic world.

2. A Blogging Activist

Who is my research for?

Sometimes I wish more of us graduate students would actually think about this. Though I often wonder what more theoretically-focused graduate students would think about my slightly obsessive focus on the experience of my participants and the usefulness (or otherwise) of my research.

I’m in academia mostly because I have educational and economic privilege that somewhat compensates for the disability barriers I face here. Thousands of more talented students than me can’t enter this academic space. (Just look at the cuts to the Open University. Non-traditional ways into academia, where some disabled students found a way in, are being closed off.) I think I have a responsibility not to keep my research to myself. Shouldn’t I share my knowledge from that place of privilege, rather than hoarding it in my computer and my filing cabinet?

But many academic forums – like, say, the American Academy of Religion – don’t seem to be all that interested in who our research is for and what we do with it (or what is done with it.) The academy may talk about ‘impact’, but I don’t know how much it really wants our research to be used for the benefit of others. Especially not in activist frameworks.

I haven’t forgotten that I was turned down for funding for my PhD project on three separate occasions, twice from the university where I did my MA that knew me well (and where I had done very well). Partly, it was because my interdisciplinary work didn’t entirely fit with what the Disability Studies department did. But it wasn’t just that. I remember a conversation with someone I was hoping might supervise me, who warned me that emancipatory research doesn’t get funded. He was right. I had to go through odd non-academic channels to get any funding.

I am an activist first. My academic work is for other activists, and for disabled people. Specifically, with my current project, for disabled Christians. (They aren’t the only people or purpose it’s for, but they’re a big focus of what I do.) I work within a fantastic, little-known tradition in Disability Studies where academics and their work have always been a resource for activism. By blogging, I attempt to offer activists some of the knowledge and theory that I’m putting together, so that they can use it in meaningful ways.

Don’t stop me from offering my work back to the activist community that is a big part of the reason I went into academia in the first place.

3. A Blogging Fan of Knowledge

As I said above, my work may be primarily for disabled people, but that’s not the only people and purpose it’s for. The other reason I research, and blog, is because I really like knowledge. I like sociology. I like critical theory. I even sometimes like religious studies. I really don’t have much time to play with that knowledge – to discover things that, yes, might be useful for my research, but equally might not be, and might just be really interesting knowledge.

For example, I listen to podcasts. I’m a particular fan of weird fictional podcasts like Welcome to Night Vale and Limetown and Psuedopod. But I also listen to a good amount of informative podcasts on the strangest topics (because my obsessions are weird). I like tech podcasts and critical news podcasts and philosophy podcasts and BBC podcasts on podcasting. I’m dyslexic, so I learn things I could never get from books (because I don’t read fast enough) as a result of podcasts. I even had my own podcast on religion and society briefly, before I found it was far too much work to continue. Podcasts! Spreading the knowledge!

I think more knowledge should be disseminated (spread around) to more people in more situations, though more media. I think critical theory could really benefit people struggling with how to respond to Paris or the refugee situation in Europe. I know many LGBT people read a lot of gender theory, and I hope it’s available to those that need it at low cost. And of course I think policy people need to listen to research coming out of disability studies. Knowledge is brilliant, and it’s life-enhancing and society-improving.

Blogging is one of many ways that we can – and I think we should – share knowledge with people outside academia. It’s easy to sit in the ivory tower and say that graduate students shouldn’t blog. That we should focus solely on our (traditional academic) work. That we should keep our knowledge to ourselves, for copyright reasons. That we should be extra careful of what we say in case it might one day reflect badly on us in a job application situation. All of these things are probably true to some extent. But not to any extent that outweighs anything I’ve said above, for me.

Fortunately, the American Academy of Religion is about a decade behind the times here. The world has moved on and they’re stuck in the past. If you want to read some interesting reflections from academic bloggers, including some graduate students, try:

Posted in academia, blogging, digital research, disabled christians, emancipatory research, research, sociology of religion | Tagged , , , , , , , , , , , , | 3 Comments

Allowing It To Happen, Pt 2: Academia, Accessibility and Elitism

“Under normalcy, no one is or can be normal, just as no one is or can be equal. All have to work hard to make it seem like they conform, and so the person with disabilities is singled out as a dramatic case of not belonging. This identification makes it easier for the rest to think they fit the paradigm.”

– Lennard Davis, ‘Bodies of Difference: Politics, Disability, and Representation’

Some things have got me thinking more deeply recently about accessibility in academia.

Let’s start with some definitions for these things. Academia is all things relating to universities and research. Accessibility is a big concept, but here I’m mainly talking about the accessibility of information and research. This (in my view) is about making it possible for everyone to understand your information/research, and making it useful for the people it’s about.

Making it useful?

Disability Studies was founded on the concept that research should be useful to disabled people and the disabled community, especially for activism. Sadly, I think it has strayed from that original goal, in a lot of its work. But DS has come up with something that I think is wonderful for that purpose: the emancipatory research model. I’ve written about this before, but essentially it involves research about disabled people being controlled by disabled people, and being useful for disabled people. In an ideal world, all research about disability would be initiated by disabled people, with groups like user-led Disabled People’s Organisations (DPOs) deciding what issues are affecting disabled people and how they should be researched (as Stone and Priestley argue). It’s a fantastic approach to research that I think has a lot to offer all kinds of social research, not just research about disability. In its original, ‘literal’ sense, it’s impractical in some contexts. I would argue that the churches (with their almost total lack of user-led groups) is one of those contexts. But, where it’s possible, this approach can be very empowering, with research being for, as well as about, disabled people.

But then there’s the real world (of academia). If I want to achieve a PhD, I have to reach certain academic ‘standards’. I have to use ridiculous amounts of jargon and write entire tomes that very few will ever read – especially not disabled people. At least some of the chapters of my PhD thesis will probably end up being necessarily technical but mainly useless to disabled people, as a result. So would it be better if I were doing this research purely for the benefit of disabled people, without trying to get a PhD in the process? In many ways it would, but then my research would be taken far less seriously (and on a practical level, I get virtually no funding to do this work, so I want to gain something from it that’s just for me). I have to have the right qualifications if academics are going to read the results of my research, and that puts me in a double bind. Staying on the ‘side’ of disabled people, in this environment, is hard work — but it is central to the emancipatory research approach.

When I haven’t made my work useful and accessible, then it’s my own responsibility to fix it. I put up a piece on recently about passing and disability in the austerity society. Someone from the neurodiversity activism community contacted me and asked me to put up an ‘easy read’ version. I was appalled at myself that I hadn’t thought of doing this. (I still haven’t done it, but at least it’s now on the list of things that I’m going to do.) I hadn’t thought of the importance of making a very practical piece of research useful to the people who it’s about. You can’t use knowledge if you don’t have access to it.

A difficult approach

How does this relate to my previous blog post? Well, I’ve been talking to some fellow PhD students and academics (mainly online) about how difficult I have found it in practice to carry out research that aims to be (as) emancipatory (as possible). And I’ve been really shocked to see them represent emancipatory/participatory research itself as the problem, and to suggest that old-school ‘objective’ research would be better for my needs. As though my needs are the most important thing. As though the traditional, oppressive, elitist, disablist academic research paradigms, which disabled people have been protesting since the 1970s, are better for everyone because it’s easier for us — researchers.

And that slides seamlessly into the pernicious idea that only the elite should be in academia. Which, mostly, doesn’t include disabled people, or those prone to mental health problems to any degree. Can’t cope with academia, its pressures and systems? Then it’s not the right place for you. Go away and be an activist somewhere else, and take your silly ideas about things being useful and accessible with you.

It is important that my research is accessible to me. No question. Otherwise it won’t get done — and I’ve realised in the past few years that I have a fairly unique set of skills and knowledge. Which isn’t to say that no one else can do this research, but might suggest that few people will. (As does the total lack of research on the experiences of disabled Christians, and even less on the experiences of disabled people in other religious contexts.) I do think it’s important that I’m able to do this research. And I do intend to write about the complexities of being disabled while attempting to do ethical, participatory research with disabled people. Everything from clashing impairment effects, to the hell of finding research venues that suit everyone’s needs including mine, has been really interesting during my fieldwork. (Did I say ‘interesting’? I may have meant ‘utterly exhausting’.)

That’s also the reason I haven’t put up an easy read version of the article yet (though I will link to it here when I have). It’s additional work – and as I said in part 1 of this series, I am drowning in work and trying to play catch-up while trying to stay on top of my health problems, all the time.

But that’s not a good excuse. While it is important that my research is accessible to me, it’s more important that it’s accessible to other disabled people, to disabled Christians. They are the reason I’m doing this research. What is the point of doing ethical research that has participatory involvement from disabled Christians and aims to amplify their stories — and then no one hearing those stories? Who is my research for? I’m co-teaching a seminar on research methods in the study of religion this year, and it has really led me to ponder ever more deeply the concept of who research is for, at all. And whether it ever reaches the people we say it’s for.

Who is my research for?

I was discussing some of these ideas (in 120 characters!) on #phdchat a while ago. #phdchat is a twitter ‘forum’, essentially, where research students can discuss our work. Some excellent scholars were defending the standards of academia, arguing that we can ‘disseminate’ research accessibly while still writing a thesis for an academic audience. Dissemination is the process of sharing research results with the ‘public’, and I agree that it is very important. It certainly is possible to say that you are creating work for two different audiences, one academic, the other (through dissemination) a wider, general audience. I’m not overlooking the importance of that – I hope my own research dissemination will reach church leaders and other Christians who come into contact with disabled people in and around their churches. (I’ve already started that process, prioritising the feedback of my work in the direction of user-led disabled Christians’ events.)

Yet, dissemination can’t make my research itself more accessible. If I had the resources, I could share my results with every disabled person in the country, tailored to their accessibility needs – but it would still be my research. That positions me as the ‘expert’, and that means that the (other) disabled people involved with the research are less valued. You can claim all you want that academia doesn’t have prestige, but it does. Our society values knowledge. It especially values overt ‘rationality’, which involves elite access to education – something that disabled people often don’t have. (An ONS survey from 2012 found that disabled people in the UK are still twice as likely not to have any formal educational qualifications as their non-disabled peers.)

And yet, at the same time, there is an important argument that everything that society produces should be as accessible as possible. It’s never going to be possible to make everything fully accessible to absolutely everyone, but we can meet minimum standards of accessibility and include as many people as we can, in everything from building design to the writing of informative leaflets. Can – and should – we make our purely ‘academic’ work more accessible to disabled people?

One accessible world?

I want to live in a world where there isn’t a division of audiences, where there isn’t the ‘inaccessible’ version and the ‘accessible’ version, but one version that reaches the people it is aimed at. One research project. One method. One language for communicating it. One way of reaching the audience.

This is pie-in-the-sky thinking. The academy will never let me get a PhD without showing that I can use the elite language that they expect, without showing that I can fit their expectations. Which takes us back to part 1 of this series. Fitting the elite academy — and whether that is worth the effort. Whether I’m losing sight of the people for whom my research is intended, in the process of getting a PhD. Whether I’m allowing oppression to continue through my own research.

Deep thoughts for a Monday.

I think a Part 3 might be on the way. Sorry…!

A blessing for our day, fellow research students: May our blogs be (as) jargon-free (as possible), and may we think about who is impacted by our research and whether we can make some attempt to include them as partners in it. Even if the answer is ‘only to some extent’ –  as in my case.

Posted in academia, disabled christians, disabled students, emancipatory research, postgraduate studies, research, sociology of religion | Tagged , , , , , , , , , | Leave a comment

Allowing It To Happen Pt 1: Disabled Students, All Students, and the PhD Process

Now that I’ve finished my fieldwork, the focus of this blog is going to change. I’m going to talk more about what it’s like to be doing a PhD with multiple impairments. I also want to ponder the personal impact that postgraduate studies can have on your life in general, particularly if you’re disabled, but not just then*.  

An interestingly high number of the PhD students that I follow on twitter and Facebook have been sharing this post. It cites research showing that PhD students are experiencing mental health issues, contemplating suicide, dealing with imposter syndorome, and assuming that this is just ‘how things are’. Thinking that they should suck it up and destroy themselves in the attempting at getting a PhD.

I think that the cruelty inherent in (some of) the process of getting a PhD is appalling. Anyone who thinks I’m being hyperbolic here, probably doesn’t know me very well. I’ve said before that the symbolic violence inflicted on disabled PhD students is problematic. But it’s not just those who define as disabled who are impacted. We at least have some (limited and decreasing) support, if only in principle. But people who are developing mental health problems as a result of their PhD programmes may feel entirely alone. They may think that the problem is them, as individuals – that they need to work harder, put more hours in, be less sensitive… and so get into a vicious cycle where mental health problems have room to flourish.

Photo: a diary page showing too many appointments and with 'stress' written in big red letters. Photo by Alisa Ryan (flickr, CC).

Photo: a diary page showing too many appointments and with ‘stress’ written in big red letters. Photo by Alisa Ryan (flickr, CC).

And the response to this is so often individualised. The idea that people who can’t ‘hack’ academia aren’t strong enough. The idea that the way things are done now is necessarily the best way, because it’s the way things have always been done. The idea that you should just give up if you find it too difficult. After all, there are hundreds of people in the queue behind you who will take your university place, and there are so few jobs that you need to take every opportunity you can get. Right?

I was supposed to go to the launch of the Goldsmiths Disability Research Centre last week. It’s nearly winter, and one of my chronic conditions is flaring up in response to the cold, as often happens. I came really close to dragging myself out to the event, even though I couldn’t stand up and the room was spinning. I was that worried about the opportunities I could be missing. The nightmare scenario flashes before your eyes: You’re going to miss the networking connection that could have helped you hear about the postdoc that you will now never have the opportunity to apply for, which means you will never get a job. You know you’re already disadvantaged compared to students with more energy and more time (because they don’t have to spend time recovering), who can teach and organise conferences and go to events. You can’t fall behind them any further… or you’ll drop off the map altogether…

And that’s all before I start talking about my actual PhD work and how that affects me!

I missed the event, in the end. I realised that I was highly unlikely to contribute anything positive to it, in the state that I was in, and that I was continuing to damage my health by soldiering on. I’m currently working from bed, attempting to restructure my life so I can do as much work as possible without further impact on my health. But that’s ultimately impossible, in a PhD programme, of course.

Here’s the secret we’re not telling each other, but that we probably already know. This situation is structural, not personal. You’re probably not the reason you might be falling behind or missing opportunities or not quite reaching expectations. The system is the problem, at least for the most part. It’s not just the overt sources of stress: the deadlines and the word counts and the data wrangling and the research participants and the reading and the teaching and the looming threat of the evil viva. It’s the covert expectations: the lack of job opportunities, the many things you’re supposed to achieve during your PhD studies, the need to be able to defend your work coherently at any moment in any setting (lots of fun for us autistic students), and the subtly-communicated pressure of having to perform at an incredibly high standard all the time… 

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. As the great Colin Barnes once said to me (as I’ve no doubt quoted before): Why are we sociologists, if not to make a difference in society? I could rephrase and turn it around: Why are we academics, if we’re just here to bolster the practices that privilege a certain kind of researcher and ensure that the majority who don’t have those privileges can’t survive in academia, no matter how talented they are? The academic traditions that I work within are focused on emancipation and social justice. Emancipatory disability research. Feminist standpoint research. Postcolonial theory and research. But we shouldn’t just talk about this stuff. We should live it.

And I’m a part of that. I need to live it — by protesting the aspects of academia that cause me harm. Not just for me, but for all the marginalised students and academics I work with, and people who will be in this position in the future. Bourdieu’s concept of symbolic violence states that it happens with the complicity of those on whom it is inflicted. That means we allow it to happen to us. Every time I refuse to protest when a teacher doesn’t give me enough processing time to communicate my research properly, I allow it to happen. Every time I’m too embarrassed to say that I’m finding something difficult for autism-related reasons, I allow it to happen. Every time I’d rather sleep on a desk in an empty classroom than reschedule a meeting (for fear of looking weak or missing academic opportunities), I allow it to happen. I allow it to happen to all of us.

A stress cycle (one that I'm very familar with). Photo text: I become stressed --> I become stressed about being stressed --> I do nothing --> I break down --> I become stressed...

A stress cycle (that I’m very familar with). Text: I become stressed –> I get stressed about being stressed –> I do nothing –> I break down –> I become stressed… Photo: seaternity (flickr, CC).

I want to stop allowing the marginalisation of students from all backgrounds who are suffering because of the PhD system and how it is structured. Will you help me?

I’ve set up a Slack channel this week for disabled PhD students and and PhDs working in disability studies.** I think the two things are closely related, and that we should get together. We all need a lot more opportunities to support each other, properly. Not in a vague, ‘aww, poor you’ sense. But in the sense of supporting each other’s activism, on our own behalf and with others, to dismantle some of the structures that cause us this kind of stress. Helping each other not just to accept that this is ‘how it is’. Supporting each other in not allowing this to happen.

I have no idea what ‘not allowing this to happen’ would look like, by the way. I don’t know if we should be fighting on a more individual-level, sticking-plaster way, e.g. for better funding for mental health services, or for bigger changes to the entire structure of the PhD. But I think we’re doing a lot of things on our own that we could bring together into more coherent, more useful approaches to the problem. We could be doing this in all kinds of forums and settings.

Any ideas?

*A ‘part 2’ on this topic will follow, because I recently realised that I started (and nearly finished) a whole long post on accessibility and academia a while ago, and never posted it. So consider this the basics, relevant to everyone, and I’ll follow with the stuff that’s relevant to disabled PhD students. And sorry for my long-windedness.

**Tweet/PM me if you want to join the Slack channel, or leave me a message here with a way that I can contact you.

Posted in academia, disability, disabled students, emancipatory research, mental health, postgraduate studies, sociology | Tagged , , , , , , , , , , , | 1 Comment

In memory of John Hull

Professor John Hull at the International Seminar for Religious Education and Values, Netherlands, 2006. Photo from his website at .

Professor John Hull, 2006. Photo from his website at .

Professor John Hull died last week.

Anyone who’s read my writing will not need an introduction to John Hull. I reference and quote him constantly. He was an inspired, innovative, critical and very thought-provoking theologian who approached disability and Christian theology in entirely new ways. He was blind, and spoke about disability and the Bible from a personal viewpoint as well as a theological one – reminding me that theology is always personal. He helped me to believe that I could research disability and Christianity in ways that could actually have impacts on the churches.

I was fortunate enough to hear John Hull speak twice, both times at the Inclusive Church/St Martin-in-the-Fields conference on disability and Christianity. I will always remember something John said at the first conference where I heard him. He was speaking critically, boldly, about the ways in which the gospels fail disabled people. Giving me permission to criticise too, through the power of his very honest speech. No cushioning here, no efforts to make other people more comfortable about their bigotry – instead, clear accusations of harm that the Bible has done through the ages.

And then a reference to the one incident from the gospels where he felt that Jesus finally understood him, as a blind man. When Jesus was blindfolded by the soldiers who taunted him and said “Prophesy!” As John said, while it wasn’t a full sharing of his experiences, “It showed willing.”

Sometimes it feels like Jesus and I constantly shuffle around each other awkwardly, never quite connecting with each other. The more I study the gospel healing narratives, and the modern experiences of disabled Christians, and the further I personally get from Christianity, the more alienated we often are from each other. Yet we’ll never be strangers. Because there’s always an echo in the gospels of the Jesus who shows willing. Who tells me I can criticise as well as celebrate. I’m very grateful for John Hull for showing me that.

Or, in his own words: “My relationship to God has become more intimate, but I had to overcome the sense that darkness is an alienating experience. I began to think of darkness as a time of intimacy, warmth, enclosure. It is in the darkness that we are with the ones we love and trust. Gradually, my image of Jesus Christ, my spiritual understanding of discipleship underwent a change as I fastened my imagination upon certain incidents in the life of Jesus, principally the blindfolded Christ.” – John Hull

There is another Inclusive Church/St Martin’s disability conference in October, and no doubt we’ll be sharing memories of John there. More info here later, or follow the website link below.

Posted in research | 3 Comments

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.


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!

Posted in academia, disability theory, disabled students | Tagged , , , , , , , , , , , , , , , , | 8 Comments

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!


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


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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