Asher Tropp at Surrey had urged us to get our hands dirty doing research rather than sign up for a taught Masters. Now, esconced at Bedford College and taking stock, I began to wonder if anyone lacking Margot and George’s M.Sc in medical sociology could land a teaching post! But in the meantime I had my own fieldwork to consider. I read and filled several notebooks while helping Anthony Hopkins construct a community sample of adults with epilepsy. We attained the latter by recruiting a handful of general practices: in Catford, Mile End, Thamesmead and, my own hometown at this point, Epsom. Anthony’s criteria for inclusion were strict and we were aiming at a sample of 100; in the event we achieved 94. Impressively, Anthony also interviewed each participant in their own homes. Ok, George Brown lent on him to make these calls, but he assented.
While Anthony made his excursions with a pre-coded questionnaire, I made my own visits with an extensive, piloted list of topics to cover and armed with an old-style cassette recorder. I recall with chagrin even now that I experienced ‘technical problems’, like broken tapes or failures to record, in eight of my first 13 interviews. The miserly pay-off from my return visits was a methodological lesson learned. Having ‘opened up’ and spilled their innermost thoughts and sentiments, people were tended to be reluctant to do so again; maybe it was too raw, or left them exposed, or maybe they regretted, even resented, having bared their souls. Fortunately I had fieldnotes to inform or top up my repeat interviews.
My 94 semi-structured interviews were eye-openers. Of course I learned a lot about ‘living with epilepsy’ and the impact of stigma, a matter to which I shall return; and I learned to draw people out by privileging listening to them over asking them questions. Looking back I am proud of what Anthony and I accomplished in our investigation. But there were additional lessons. Listening has its own rewards: I discovered, I am sure like many of my fellow researchers and clinical colleagues, just how interesting people can be when you free them up to speak. How complex, convoluted and poignant our lifeworlds are! When I reflect on those years – 1972-75 – I am amazed at how free I felt to roam around London. On many an evening trek I would take the darkest of short cuts through East London’s streets. One feels more at ease in one’s 20s no doubt, or maybe it really was less threatening then. A few study participants stand out. An elderly man who had sparred with Ronnie and Reggie Kray in their boxing days. The publican who forever wondered if having a fit in the bar one day in front of his punters would undermine his authority. The lovely family in which a bright, sparkling daughter with epilepsy in her early 20s had cut herself off from the outside world, due in part to an over-protective father, a London cabbie who had ‘seen it all’, and whom mother and sisters were trying so hard to rescue. And perhaps most dramatically, the former gangster whose ‘canaries’ (seizures) had terminated his career as a get-away driver, and who insisted on doing press-ups, first one arm, then the other, while I interviewed him and while his trophy wife made tea. I came across his name many years later in a column in the Evening Standard. He had robbed a bank, backed out holding a sawn-off shotgun and the proceeds, stepped off the pavement and been run over (he was quoted as saying ‘it’s a mug’s game’).
My commitments to processing the data have always prejudiced me against short-circuiting software designed to ‘facilitate’ the analysis of qualitative material. True it was a time-consuming business: my personal mode of transcribing the first interview ate up 13 hours. But what an investment: I really got to know my people. I developed around 50 ‘topic-cards’ covering all those areas and topics of interest to me. I then went through each tape noting relevant quotes and points of interest for each topic. I used a system of cross-referencing, so that I could flexibly link people and/or themes. Finally, I deployed the tape-counter to record precisely where each quote or point was on each cassette: I could go back to check for detail or context. I later wrote the method up in a special issue of Social Science and Medicine edited, I think, by Uta Gerhardt. I have a depressing feeling now that my strategy for the processing and analysis of data would be judged an inefficient use of a researcher’s time. Stick to schedule, write up, publish in high impact journals and move on to the next opportunity.
My initial sense of what I would find out about the stigma associated with epilepsy proved wrong. I had absorbed Goffman on ‘spoiled identities’ but had also come into the study on the back of interactionist ‘labeling theory’ of the sort pioneered by Becker, Erickson, Lemert and others in the USA. I had learned something of this at Surrey as an antidote to the structural-functionalist orthodoxy. I suspected that once diagnosed or labeled by doctors – that is authoritatively ‘converted into epileptics’ – people would be stigmatized, belaboured with all the predictable, negative effects epitomized in the concept of secondary deviance. Not a bit of it! Most people with epilepsy have the option to conceal their symptoms, and my interviewees routinely did so. This rendered them relatively immune from stigmatization, what I was to call enacted stigma, but not from a sense of personal diminution and a fear of encountering stigmatization, what I came to name felt stigma. Thus, felt stigma screwed their lives up more often and more comprehensively than enacted stigma. This conceptual dyad, felt and enacted stigma, was later reported in Sociology of Health and Illness. Like it or not, and it is okay, I have maybe lived off it since. Such is the strange way with many an academic discipline and reputation.
But somehow or other, a symptom of the era, my thesis meandered on after my three years of full-time employment. In fact, in 1975, it was barely visible on the horizon. I was not hassled by either Anthony or George. I was to spend many an evening and night at home typing it up on my portable typewriter, lost in billowing clouds of pipe smoke; with each typo I sighed, screwed up the paper, threw it across the room and began that page again. What do today’s Ph.D candidates know? I eventually submitted the thesis in 1983. David Robinson, the external examiner, spotted 13 typos and gave me the option of correcting them. Neither George nor I gave it further thought. I ended the viva with a headache so my celebrations with Annette were muted. It was an anti-climax of sorts. Ph.Ds insinuate themselves into your lifeworlds and ‘colonize’ them. Part of my life came to a conclusion that day. But in the mere 11 years it had taken me to clear this academic hurdle, other things had been afoot.