I noted, on Twitter, how pleased I was to discover that there was good information available online about my current condition. I want, here though, to offer a few words to the ridiculous arguments that are sometimes brought against open access. Namely, 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. First, know this: my institution, although prestigious and well-regarded in many ways, does not have a medical school. As a result, I do not, therefore, have access to all the papers that detail my condition. Second, make no mistake: I can read a scientific/medical paper and understand it. I have a Ph.D. in English literature, I have been teaching myself statistics, I’m an industry-certified computer programmer. 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 even when I might not presume to be able to challenge material within.
So when I encounter articles like “Long-term outcomes of internal carotid artery dissection”, which is where we eventually got to in my case (with a range of potential etiologies, all of which remain speculative), it is a joy. All of the teams at the Royal Free Hospital were fantastic, but I was dealing with neurology, vascular team, rheumatology, and stroke team. Each brought its own disciplinary perspective and sought to clarify what had happened to me in its own known terms. This often meant that the right hand didn’t know what the left was doing in between multidisciplinary team meetings. This led to, in my view, a very disconnected clinical experience where I was bounced from one team to another, with different narratives emerging from each at different times. At a time of despair, this access 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 seek out some common causes in 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. My experience of working at different institutions also leads me to 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 don’t know what my clinicians don’t know when someone, like me, turns up with a rare condition.
What I’d like to close with here is that when worlds collide, interesting things happen. I remain dedicated to facilitating open access in the humanities disciplines, 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). But for me, the patronizing arguments that either everyone who needs it already has access or that there is no audience for OA can easily be countered by stories like this. We need open access. It makes the web a far better place, one where patients can turn to find high-quality material that can help them make sense of their conditions, one where others can turn to help them make sense of their worlds and cultures.
Finally, I’ll just note that so far I am recovering slowly but well. Thank you so much for all the well wishes. I am hoped to make a return to good health (see the study to which I linked above) and I will continue my work at the University of London and on the OLH. I am currently up to walking for about an hour and a half. My mental faculties seem to be on good form, at least to me.