The main event of New Research Trajectories is happening this coming Wednesday, 15 December in Nottingham City Centre, with a range of activities by postgraduate students from universities across the East Midlands. Download the poster and see the website for more information.
“Medical information has been described as no longer being bound to medical institutions, but as having “escaped” into society at large by means of media and most notably new media.”
(Mager, 2009; 1123)
In her very interesting article – Mediated Health: Sociotechnical practices of providing and using online health information – Astrid Mager uses Actor-Network Theory to examine the user-provider relationship in online health information. Reading it reminded me of recent personal experience.
From the age of sixteen, I have suffered from recurring headaches. Attacks last 2 to 3 hours, and occur once, twice or occasionally several times a day. The pain is located exclusively on the left-side of my head, centred behind my eye. It’s nothing like a migraine – I don’t feel sick, or get irritated by background noise or bright lights. It’s nothing like the dull or nagging pain of a normal headache, but rather like being stabbed continuously in the eyeball. Attacks have made me cry, scream, roll on the floor, and carry out irrational acts of self-inflicted injury – during one attack, I belted my head so hard against the door to my room I made a crack in it (the door, not my head). Even the strongest prescription painkillers have barely any effect.
It was initially diagnosed as sinusitis. I was prescribed antibiotics and after 2 to 3 weeks the condition disappeared. Subsequent episodes (again lasting several weeks) occurred every few months or so. Gradually the gap between these episodes increased to a year, then several years. My last episode was five years ago (and counting!) Since that original diagnosis, I’ve changed location several times and with it, my GP. None of them ever witnessed me having an attack, or really questioned the original diagnosis. It wasn’t until my most recent episode, whilst studying in Cornwall, that the doctor actually took the time to enquire more thoroughly into the nature of my attacks. He suggested I had been suffering all this time from cluster headaches (which I had never heard of before). He still proceeded to give me a course of antibiotics – for my own reassurance rather than any belief they’d help – and I endured this latest series of attacks for a few more weeks, as normal.
But the significance of this new diagnosis was that it coincided with, for the first time, my access to an increasingly populated source of information – the web – which over subsequent years has multiplied through various forums, networks and online support groups. Sure enough, everything I read online about cluster headaches, from medical reports to sufferers’ own experiences, seemed to relate very closely to my condition: the one-sidedness, the episodic nature of attacks, and the intensity of the pain.
In a quotation on Wikipedia, Professor of Clinical Neurology and headache specialist Dr. Peter Goadsby remarks:
“Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven’t. Women with cluster headache will tell you that an attack is worse than giving birth.”
I realise self-diagnosis from potentially unreliable sources – not least on the web – can be irresponsible and even dangerous. In my case, it wasn’t self-diagnosis as such, rather following up on a diagnosis provided by a medical professional. But all the same, even given the overwhelming evidence, I was still cautious in questioning what I had been led to believe for many years. However, what has clinched it for me has been the emergence of a significant number of videos posted on YouTube by sufferers willing to share recordings taken of them during a cluster headache attack. Here’s a couple:
Watching these for the first time was a revelation – the rolling back and forth, the cradling of the head, the pacing up and down, the involuntary crying out – it was all frighteningly familiar. These videos and others like them hardly constitute a definitive diagnosis for my own condition, but as visual and explicit mediated experiences, they are highly persuasive. Even after repeated viewings, they bring me out in a cold sweat.
I don’t blame the GP who made the initial misdiagnosis, nor the subsequent doctors for not challenging it. It appears medical knowledge about cluster headaches was, until only very recently, largely restricted to specialists. The online forums are full of people recounting misdiagnoses of sinusitis and migraine.
I’ve been free of this for five years now, and have no idea if and when I’ll get another episode. But I know if I do, it should only last for a few weeks. Whilst I’ve suffered this over many years, I think of myself as being extremely fortunate. As an episodic sufferer, with increasingly long remission periods, my experience is insignificant compared to chronic sufferers. I cannot even begin to imagine how they manage to live with this debilitating condition on a daily basis. I only hope that the shared advice and discussion that is evident on the web provides at least some support.
Reference
Mager, A. (2009). Mediated health: sociotechnical practices of providing and using online health information. New Media & Society, 11(7), 1123-1142.
“Nobody grasped you by the shoulder while there was still time. Now the clay of which you were shaped has dried and hardened, and nothing in you will ever awaken the sleeping musician, the poet, the astronomer that possibly inhabited you in the beginning.”
Antoine de Saint-Exupéry (1939)
de Saint-Exupéry, A. (1939). Terre des Hommes. Paris: Gallimard.
The postgraduate and early career researchers who have attended the social media sessions I’ve been running with LeRoy Hill over the last year bring with them rich and wide-ranging learning experiences and perspectives.
Some might have been under the impression that we are on some sort of crusade with web 2.0, but we are not. It’s always been about raising awareness of its potential. We recognise that the values of these tools are highly situated in each researcher’s individual practice and disciplinary research culture, and many attendees are rightly apprehensive over the appropriateness and usefulness of social media in their studies and work. We welcome current users who share their social media practices with other attendees, often supporting our enthusiasm with fresh and unique perspectives. But we are equally happy for them to share bad experiences, misconceptions and concerns. This is why we try to encourage an interactive environment and opportunities for discussion.
I can’t speak for LeRoy (though I think he’d agree), but I’m happy for attendees to go away choosing not to adopt any or all of the social media we discuss, as long as the sessions have given them the opportunity to reflect on their own use, or potential use, of these tools, and encouraged them to think critically about their applicability to their own practices and the wider contexts of web 2.0.
This approach also informs and underpins the modes of enquiry and analytical model I am developing for my current PhD work with doctoral students. But what do we mean by critical and reflective practices? Both draw on rich historical and contested models and definitions, which I will not attempt to review here. Rather, I’d like to suggest how these (in my view, often interrelated) practices should be embedded in the processes postgraduate researchers adopt in using social media.
Reflective Practices
Critical Practices
In critiquing exaggerated claims of ‘self-organizing’ behaviour in social media, Alan Levine (AKA @cogdog) draws on Emergence theory to argue that patterns of corresponding participation – such as Twitter users tweeting on an event – “arise out of a multiplicity of relatively simple interactions” and do not necessarily indicate collaborative or coordinated acts.
Resulting ‘constellations’ of participation are frequently interpreted through network analysis and increasingly complex visual data representations. But how do we go about examining any claims that these are more than merely the result of cumulative activities? This requires exploring the interplay between individual and social agencies, motivations and influences, and understanding how these are acted out within cultural contexts and protocols. To use Levine’s example, actors may acquire a ‘sense’ of collaboration (for example, in producing a collective digital archive) but is this realised through a shared cause or an environment for debate? Is the participation – and the nature of the contributions – the result of individual self-will or coerced? What hierarchies, power relations and modes of influence might be at play here? And how does the technology influence these things?
Stephen Downes’ article for the Huffington Post is brilliantly encapsulated in this paragraph:
“Two different types of knowledge. Two different sets of skills. If we want people to socialize, to conform, to follow rules, we’ll focus on the repetition of the symbols and codes that constitute explicit knowledge, to have them become expert in what Wittgenstein called “language games,” the public performance of language. But if we want people to learn, then we need to focus on the subsymbolic, the concepts, skills, procedures and other bits of tacit knowledge that underlie, and give rise to, the social conventions. We cannot simply learn the words.”
This makes a lot of sense. But from a learner’s perspective – and maybe I’m drawing too much from socio-cultural perspectives here – it often seems that we need to become skilled in the former to be able to gain access to the latter.
Hot on the trail of the Browne Report, Philip Dodd hosted a wide-ranging debate with a group of educational policy makers as part of the BBC’s Free Thinking series, in association with the University of Sunderland. The Business of Knowledge: What do we really want from universities and graduates in the 21st century? was held at the National Glass Centre and broadcast on BBC Radio 3’s Night Waves on 28 October. Here’s a summary of the key arguments:
HE Funding
James Tooley (Professor of Education Policy, Newcastle University)
Bahram Bekhradnia (Director, Higher Education Policy Institute)
Nicola Dandridge (Chief Executive, Universities UK)
Paul Callaghan (University of Sunderland Board of Governors)
Learning Practices
Nicola Dandridge
Bahram Bekhradnia
Paul Callaghan
James Tooley
Learning Equality
Nicola Dandridge
Paul Callaghan
Nature of Knowledge
Nicola Dandridge
Bahram Bekhradnia
James Tooley
Educational Systems
James Tooley
Paul Callaghan
Bahram Bekhradnia
Nicola Dandridge
International Students
Nicola Dandridge
Paul Callaghan
James Tooley
Earlier today, Leroy Hill and I ran the latest in our social media sessions; our first at the Arts Graduate Centre.
The sessions are designed to integrate a range of interrelated key concepts (e.g. networking, digital identities), underlying processes (e.g. folksonomy, aggregation), and tools / media (twitter, blogs etc.), with the hope that personal and disciplinary perspectives, and wider socio-cultural and political contexts will emerge.
Today’s attendees – a mix of doctoral and masters degree students, primarily from the arts and humanities – didn’t let us down, demonstrating thoughtful, reflective and critical approaches to adopting and using social media in their practices.
Within our structured programme of presentations, we try to adopt a flexible approach to encourage an informal and interactive environment, and today, it’s refreshing to note that by the time the two sections we had factored-in for group discussion came around, the attendees had already brought up many of the key issues we were planning to introduce. Key concerns raised during the session included the usual suspects:
We hope all the attendees found the session as useful and rewarding as we did, and we look forward to seeing them again on November 24th.
Further to my previous post on the role of vocational training in Higher Education, I was struck by this refreshingly measured perspective on education and training by A C Grayling – Professor of Philosophy at Birkbeck, University of London – writing in the New Statesmen.
In response to impending spending cuts in the humanities, Grayling asks us to question the fundamental role of Higher Education. Addressing the current ‘hybrid’ nature of universities, he argues for a balance between training and what he calls ‘proper’ education:
“Engineers and biochemists can benefit from thinking about ethics and politics (they might find themselves working in the oil industry in developing countries where already vulnerable lives might be adversely affected by what they do). In the other direction, literary scholars can benefit from training in logic and the social sciences… both training and education are necessary. To fail to explain to someone the point of being trained in a skill is to halve its value, while to invite people to reflect and discuss if they know little and cannot reason is futile. But are engineers taught ethics? Are students of literature schooled in logic?”
This, argues Grayling, requires a “proper mixture of training and education that advanced study should deliver.” Yet a Higher Education that is increasingly driven by models of economic efficiency and scientific bias can only lead to restrictions in both time and resources, squeezing out opportunities for critical and reflective learning.
In a comment on my previous post, Virginia Yonkers expressed concern over prevailing business-orientated approaches to education in the US, at the expense of “the development of future members of our society… new solutions to problems, fairness in the distribution of resources, and an engaged civil society.”
In a similar vein, Grayling concludes by suggesting:
“Society certainly needs engineers, physicists, doctors, computer specialists, biochemists and geologists. But it also needs its lawyers, journalists, politicians, civil servants, writers, artists and teachers – and it needs everyone on both sides of the science-humanities divide to be a thoughtful voter, good neighbour, loving parent, responsible citizen. In short, society needs to have a civilised conversation with itself about its values and about what is to be learned from the experience of mankind.”
