“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 academia.edu 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.
Uncovering the Roof 