Neil Vickers: It's a striking fact that before the late 1950s there were very few "illness narratives," and those that did come to public notice were produced almost entirely in the US. Until the mid-1970s, illness narrative was really just a first cousin of the self-help book; about the nuts and bolts of being ill, not about the effects on your life. What I think began to transform the genre was that by the late 1980s there were a number of celebrity illness narratives that changed the rules significantly—like William Styron's Darkness Visible—and then there were lots from the early 1990s. It's around that period, early to mid-1990s, that you start to get the first volumes of criticism about the form, and this criticism is very much about "how do you avoid selling out?" when you're writing as a patient, especially if you have an illness that's scaring the hell out of you. One influential critic is John Wiltshire, who is now working on a history of medicine solely from the patient's point of view.
Michael Blastland: When you say "selling out," do you mean that the concern is that people may be exploiting something deep and personal in a slightly sordid way?
NV: There's that, yes—or you might be presenting everything as a triumph over adversity, as if admitting any weakness or vulnerability is a bad thing. The critics agree that it tends to make for a better story if there are larger perspectives. But I think the "I've triumphed over incredible odds" narrative is a kind of mania which has rather receded into the past. That was very much in the mid-1970s, while today there are so many web-based illness groups that it's the online world that really fills people's lives. Many people go home at six then go online and stay online for the next six hours: they form relationships, get married to people they meet there, all of that.
MB: I can only speak as a carer, not a sufferer—my son is severely autistic—but I think it's rather a bizarre paradox, considering how inhibiting an illness can be socially, that it can also turn out to be a way of getting yourself out there. I recall a friend of mine, the historian Felipe Fernández-Armesto, who would bowl into the office when we were working on a programme together and say "how's the boy?" and I would give him an account, and one day he just said "fascinating!" This was an extraordinary moment for me. There's that great saying that the definition of a bore is somebody who, when they're asked how they are, tells you. For so long I had been afraid of the self-indulgence that it would imply to go on too much about ill health. Yet here was this very intelligent man who had just said "fascinating!" I went away absorbed by the thought that talking about illness isn't only a selfish fascination, that it's also a way of turning something that could take you down a sink of introspection into something much more open and engaged and curious.
Francesca Happé: There's a parallel here with becoming a parent in that, from the moment you walk down the street when you're pregnant, people talk to you about this most intimate thing: they can see straight away what the most important thing in your life is. So you're suddenly open to the world at the same time as being immersed in the tiny unit of your family. Similarly, there is that extraordinary thing when you're going through diagnoses or trying to work out what's wrong with someone you care for—it's so personal that it seems wrong to share it, yet at the same time you have this enormous connection with other people in the same situation.
NV: And yet it's only relatively recently that the culture became more confessional, which in turn removed substantial taboos from illnesses and made them objects of legitimate curiosity. It's interesting to think about this in terms of literary criticism over the last 30 or 40 years, which has basically abandoned the idea of the universal in favour of particular experiences. We now read Shakespeare to find out about gay experience, about women's experience, or about every possible form of disadvantage—except for illness. Illness is the one thing literary criticism has never done, melancholy aside, and I don't understand it. I think there is a kind of institutional inhibition towards illness experience in most literary studies. That's perhaps why the people who are in it often call themselves "disability theorists."
MB: Yet it is such a commonplace to say that artistic experience can be informed by physical sensitivity, it's surprising for criticism to imply that it can't be formed by various kinds of physical inhibition. Is it accepted, now, that you can write about illness in a way that is genuinely life-enhancing, that gives some deeper insight into the way life is lived?
NV: Yes, I think it is recognised that there really are lots of profound illness narratives that are moving and truthful—as opposed to the self-help genre, whose limitations are transparent. There's something about human dignity that can emerge from illness narratives that's almost unique. I don't know if you've read Chernobyl Strawberries by Vesna Goldsworthy: she thought she was going to die of cancer and had a young son, so she decided she was going to write an autobiography so that he would know what she was like. It's all about growing up in Belgrade in the 1970s and 1980s, and I think these are often the best kind of illness narratives: memoirs that give you a sense of the person outside the illness, and of how illness is integrated into the identity. Gillian Rose's Love's Work is another great example of that—it has 70 pages in which she says, "let me tell you my philosophy," and she does just that.
MB: Having said that this genre very much began with medical discussions, that implies a big shift. As far as there would still be a criticism of it, in fact, I suspect it would be on the grounds that narrative can often be delusional in medical terms—we can't always trust the patient's story. So when they say, "I ate 16 oranges and my psoriasis disappeared," that's a narrative which is not an adequate summation of the medical condition.
NV: Simplification is hard to escape, although the best writing does just that. But I suppose that, today, many people's primary encounters with the genre are through television dramas.
MB: What kind of medical narrative do we see in these dramas?
FH: I think many of them are more detective than medical fiction: a whodunit, where the villain is the disease. And most of them, like ER, resolve every patient: there's always a cause which is known in the end. You may not save a patient, but it's always understood, and that's obviously deeply misleading and plays into why patients are so disgruntled when their GP doesn't know what the cause of their backache is.
NV: What medical soaps reinforce is that our medical culture is predicated on a huge rescue fantasy—the medical substance is just there to produce a reality effect.
MB: Of course, once you start trying to tell the story of something like autism, the whole idea of "reality" becomes very problematic. People with profound autism often have no sense of narrative, which means that the true personal account of autism can never really be written. They just don't see the psychological stitching between events that we see; and how do you create a narrative where there is only this succession of what I sometimes call "car crashes," these things that come out of nowhere and land in your space? In fact, the tools we have for understanding the condition are exactly the wrong ones, and for me this suggests a larger problem with narrative. From one perspective, people with autism may understand life better than those of us who seek to impose narratives on its rather random events, because they have a better sense of how random things can be. The rest of us fill in a back story to get us to where we are now, but that's absent in some people with autism, and it's probably properly absent if we're trying to think about "truth."
NV: Historically, autism has also had only a few narratives which have stood for the whole experience.
MB: Absolutely, and to some people's huge annoyance. I know that there are people who ferociously resent The Curious Incident of the Dog in the Night Time—which I think is a wonderful book—because it creates this sort of James Bond of Asperger's with prodigious talents in so many areas.
FH: It happened before with Rain Man. On the one hand, people with children with autism were delighted to have its profile raised, but on the other hand, you might get people saying to you ,"You have a child with autism, how fantastic, what's their talent?" Yet there is this strong human need to make sense of what you and the people you care about are going through. If you have a child with a developmental disorder, you want to make sense of it, and a lot of parents are relieved when they find out there is a clear genetic reason for their child's autism, for example. Even though it's not going to lead to any immediate treatment, it's somehow an answer to a question that's open and tormenting. The need that people have to understand is a general thing about human nature. There is, on the scientific side, research showing that individuals who suffer post-traumatic stress disorder tend to be those who don't integrate it into a narrative, while those who do integrate it into a narrative don't have flashbacks and don't tend to be so haunted.
MB: Yet you're always struggling to control the potentially malign effects of narrative. And what medicine particularly struggles with is being sure that's it's covered all the potential lines of causation, not just one plausible story, because you never know where the true cause and effect will lie. That's why medicine has to go to the difficulty of constructing elaborate trials, because the story is unreliable.
FH: The power of stories in the mass as well as the individual sense is huge. With the MMR furore, the media immediately went and interviewed parents who felt that their child had changed after the vaccination—that story is so powerful it was just being mainlined into their emotions. It's all about the story that gets inside your head.
MB: It's interesting, because in the case of very serious autism, that's exactly what you can't do—it's pretty much impossible to get inside someone's head or explain things to them. You can only reach people with the condition, in fact, by imposing routines to which they become accustomed. You establish things as facts of ordinary living, you break the task down, you do it over and over again. This is the way that even people with more high-functioning autism work. They have a back catalogue of previous experiences which they can compare events to, almost like a statistical test of what seems to be most appropriate in a social interaction. They have a very clear understanding of mechanical cause and effect—if I pour the milk on the carpet it makes daddy pull a very funny face—but no sense at all of the question of why you should or shouldn't do these things. It's one of the ways I think that autism is quite valuable, because it does remind us that there are ways of thinking about the world that are not exclusively about telling a story.
FH: And the study of autism has highlighted, for example, how absolutely extraordinary the capacity to engage in pretend play is, which every typically developing child shows. I don't think we would ever have stood back and said: isn't it extraordinary that a child can understand what's meant in a pretend game where their mum picks up a banana and says into it "mum's on the phone." Understanding this is a miraculous ability, and it's only pointed out by its absence in autism.
NV: Finding out more about things like autism is quite a challenge to our instinctive ways of perceiving what's going on and narrating these stories. And its lessons are recent. In even the recent past, people with autism were dealt with appallingly.
MB: It certainly reveals a lot of the limits connected to our affinity for narrative—which is probably linked to the fact that most of us need narrative so much, and are so adept at constructing it. Humans are terribly bad at, for instance, over-interpreting coincidence. There are some experiments going on at the moment, where they're getting machines to do medical diagnoses, and it's demonstrable that over time the average result is better than the surgeons. Narrative can quite often, I think, be overly hopeful in medicine: there's a presumption that doing something is good, and there's a tendency to inform the desire to do something with a supporting narrative. Yet sometimes the evidence has shown that things in whose efficacy we had a sincere belief don't do any good at all. Now how did we sustain the idea that they were doing good? We told a story.
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