‘Lies, damned lies, and statistics’: mesothelioma in literature
Arthur Rose discusses why, as a literary scholar, he found some of the report’s statistics surprising:
When the science writer, Stephen Jay Gould, was diagnosed with peritoneal mesothelioma in 1982, his reading around the matter revealed that ‘mesothelioma is incurable, with a median mortality of only eight months after discovery.’ But, Gould realised, the median is not the message. The statistics didn’t mean that he would die in eight months, nor that he would probably die in eight months, just that eight months is an abstracted average of how long people live. Statistics are abstractions that help us explain variation, but we tend to treat these abstractions as if they were real. In fact, variation, or difference, is a far better determinant of our actual situation. In response, Gould draws on Mark Twain to quip that there are ‘three species of mendacity, each worse than the one before – lies, damned lies, and statistics.’ Perhaps statistics don’t lie, but neither do they tell the whole truth.
The statistics in the British Lung Foundation’s (BLF) ‘Battle for Breath Report’ (2016) are, thankfully, more sophisticated than Gould’s median. But they remain sobering, as my colleagues have noted. So the inclusion of mesothelioma statistics into the report is timely, welcome and surprising. It is timely, because, far from the expected ‘tailing off’ of mesothelioma incidence, expected with a decline in asbestos use, there was a 13% increase in the number of people who died from the disease in 2012, up from the previous research findings in 2008. ‘Decline in asbestos use’ refers to mesothelioma’s almost universal association with asbestos. When the UK banned brown and blue asbestos in 1985 and white asbestos in 1999, it was assumed that the number of people affected by asbestos-related diseases, like mesothelioma, would begin to tail off: this has hardly begun to happen. This may be because mesothelioma can take 30 to 50 years to present, but is also, no doubt, owing to the fact that much of the built environment remains heavily laden with asbestos: up to 85% of schools are said to retain significant quantities of asbestos.
Clearly asbestos will continue to be a problem for quite some time to come. Yet mesothelioma occupies a strange place in lung research, making its inclusion in the report welcome. The reason: it is a cancer of the pleura, rather than the lung itself, and thus extends our understanding of the ‘lung’ beyond the organ. The chest pleura is the membrane that connects your ribs to your lungs and heart. The connection helps the lungs rise and fall with the chest, but, like all such connective tissue, we don’t give it the same kind of attention we give more recognisable organs, like hearts and lungs and stomachs. This might be because we don’t ‘feel’ our pleura, as we might ‘feel’ our heart when it begins to beat more rapidly, our lungs when we breathe more deeply, or our stomachs when we eat more than we should.
Of course, actual sufferers of mesothelioma feel their pleura all too acutely when they are attacked by chest pain and shortness of breath. Mesothelioma’s appearance in the BLF’s report is welcome because it reminds us that lung conditions extend beyond the lung itself. The self-declared aim of the BLF is not simply to respond to lung disease, but to ‘help people affected by lung conditions’. Such help requires the layperson to think of the lung as part of the respiratory system, rather than the sole focus of investigation. This might be what I find so surprising: that the BLF’s support of lung conditions encourages us to think beyond the lung-as-organ to the lung-as-system. But it isn’t what I find most surprising.
What I find most surprising, as a literary scholar, are the statistics around gender: 80% of mesothelioma cases occur in men. The BLF give a plausible explanation for this: the greater likelihood of men having served in the armed forces or in heavy industry, two lines of work with above-average incidence. The majority of autobiographies, written by female carers for their husbands or fathers, would testify to these statistics. These statistics do threaten to bury a longer history of female asbestos mill workers in North West England. But, even this occupational history is at odds with the way the culture industry responds to mesothelioma. For the most significant fictional works to respond to mesothelioma, like Lionel Shriver’s So Much For That (2010) or Ross Raisin’s Waterlines (2012), address it, at least at first, as a problem for women who don’t work with asbestos. At least at the outset, they are presented as victims of their husband’s professions. The women in these narratives are not, at least initially, associated with asbestos industries: they represent what some call the para-occupational sufferers. Occupational histories tend to present Asbestos-Related Diseases as occurring in three ‘waves’. If the first wave constituted miners, factory workers and their families, who dealt with asbestos in its unrefined state, and the second wave included builders, plumbers, electricians and their families, who worked with processed asbestos, the third wave was made up of para-occupational sufferers: people who shouldn’t have been exposed to asbestos but who came into contact with the mineral through DIY or teaching in schools. Critically, each wave includes the spouses and families of workers who came home with asbestos dust on their clothes. It is the stories of these innocent families that have often proved the most powerful in drawing public attention to the continued problems of asbestos. The surprise I feel comes from a strange mismatch between the statistics and the stories that have been most effective in making us pay attention to those statistics.
Stephen Jay Gould died in 2002, 20 years after his diagnosis with mesothelioma. Objectively, he beat the median. But that isn’t the lesson we should take from Gould’s story. By some clever intellectual footwork, Gould could feel like he had more time. Whether he did or didn’t wasn’t at issue, since, as he himself realised, his feelings affected his attitude to the cancer. ‘Lies, damned lies, and statistics’ is not a jab at statistics, or, not entirely. It is also a much needed injection of humour into the frequently sober debate around number-crunching. Novels like those of Shriver and Raisin are not, at first reading, ‘humorous’, but they do point to an important quality, not altogether visible in medians and measurements: a literary sympathy that attempts, at risk of failure, to grasp the feelings of people who do live their disease as a statistic but as a part of their everyday life.