I’m a Professor of Literature, Technology and Publishing at Birkbeck, University of London. I specialise in contemporary American fiction (primarily the works of Thomas Pynchon, Don DeLillo and David Foster Wallace), histories and philosophies of technology, and technological mutations in scholarly publishing. And I’m a member of the UK English Association’s Higher Education committee.
And you’re involved with the open access movement?
Yes, I wrote the book Open Access and the Humanities: Contexts, Controversies and the Future (Cambridge University Press, 2014: 9781107484016). I appeared before the UK House of Commons Select Committee BIS Inquiry into Open Access, and wrote for the British Academy Policy Series on the subject. I’m a steering-group member of the OAPEN-UK project, the Jisc National Monograph Strategy Group, the SCONUL Strategy Group on Academic Content and Communications, the Open Knowledge Foundation’s Open Access Steering Group, the Jisc Scholarly Communications Advisory Group, the Collaborative Knowledge Foundation advisory board, the California Digital Library/University of California Press’s Humanities Book Infrastructure advisory board, and the HEFCE Open Access Monographs Expert Reference Panel (2014). And I’m one of the founders of the Open Library of Humanities.
We should talk about the Open Library of Humanities properly some time, but today I wanted to ask about your health.
in Early March this year, I started to go into a series of hemiplegic migraines in which I would lose feeling down the left side of my body accompanied by awful visual aura and a headache sensation afterwards. I was also losing sensation in my arms, legs, and face. By mid-March, I was feeling terrible and my GP sent me to an accident and emergency department. MRI and CT scans have revealed several strange features of my neurological and vascular systems: I have been suffering from a cerebral vasculitis for some time. This has blocked my carotid arteries with inflammation but also caused my vascular system to broaden in another route. In other words, as one route to supply oxygen to my brain has been cut off, another has broadened. The MRI also showed that I have suffered from a small stroke.
The good news is, the stroke is small enough that I should be able to make a full recovery from this provided that the doctors can control the vasculitis. I’m on a lot of drugs to control this and to address the side-effects.
I was able to do this interview but I feel fairly nauseated and tired, probably because my brain is being starved of oxygen. I’m also still very migrainous.
Have you been able to find out what you need to know about your condition?
I was pleased to discover that there was good information available online about my current condition. I want to offer a few words to the ridiculous arguments that there isn’t a public for this material because it is specialized in both its wording and its content. This is total nonsense and I really can’t stand it.
My institution doesn’t have a medical school (and even if it did, this might not remedy the situation since no medical school has everything). As a result, I don’t have access to all the papers that detail my condition. Make no mistake: I can read a scientific/medical paper and understand it. To read an article in a remote field takes me much longer – and it varies from paper to paper – but I can understand what is being said.
So when I encounter articles like “Long-term outcomes of internal carotid artery dissection”, it is a joy. All of the teams at the Royal Free Hospital were fantastic, but I was dealing with four team: neurology, vascular, rheumatology and stroke. Each brought its own disciplinary perspective and explained what had happened to me in its own terms. This often meant that the right hand didn’t know what the left was doing in between multidisciplinary team meetings. This led to a very disconnected clinical experience where I was bounced from one team to another, with different narratives emerging from each at different times. At this time of despair, access to relevant research didn’t even feel like a luxury. It felt necessary for me to keep myself sane and healthy between teams — and to understand what was going on, what the likely prognosis would be, and what it was going to look like on the other side. For me to be able to read the literature and feel some sort of patient-led conversation was taking place was heartening and got me through.
Please don’t tell me, then, that it’s OK because everyone who needs access to the literature has it. I can’t get everything I wanted and, spending weeks in a hospital, I could hardly “go to the library”.
I’ve been lucky to find a few pieces spread here and there. It’s a real shame, for instance, that I can’t get hold of this case study, which looks extremely interesting (but of course might not be), without paying for a subscription. And I’m not going to pay one-off fees every time on the off-chance that something turns out to be of use. There’s another deeper worry, though.
What about doctors?
My experience of working at different institutions makes me worry about the level of access my clinicians have. I have never had full access to every article I needed in my field at any institution. And I can’t tell what my clinicians don’t know when someone, like me, turns up with a rare condition.
Any closing thoughts?
When worlds collide, interesting things happen. I’m dedicated to open access in the humanities, even when nobody needs this in a life-threatening circumstance (although I have argued that such circumstances do exist in Open Access and the Humanities). We need open access. It makes the Web a far better place, one where patients can find high-quality material that help them make sense of their conditions, one where others can turn to help them make sense of their worlds and cultures.