15 August 2013

What is stigma and how does the social justice movement get it wrong?

In my next few posts, I'm going to be commenting on the interactions between public health, social stigma and activism. Here, I address some basic questions. How do public health interventions cause stigma? When does moralizing become stigmatizing? And what are the implications for anti-stigma activism?

Public health and stigma

Many public health interventions aim to promote awareness of disease and reduce its occurrence. However, there is often tension between what Petersen & Lupton have called a 'modernist, science-based approach to dealing with health issues' (i.e., public health as an applied science) and the effect of stigmatizing the people living with such disease. Link & Phelan argue that 'when people are labelled, set apart, and linked to undesirable characteristics, a rationale is constructed for devaluing, rejecting, and excluding them'. In this sense, public health research undeniably provides fodder for prejudicial attitudes -- what seems at first glance to be collateral damage wrought by efforts to contain disease.

Indeed, some scholars of bioethics and public health argue that stigma is an inevitable consequence of a public health communications tradition that is 'moralizing' and that has 'escaped the scrutiny of ethical discussions'. A defining challenge of health communication is therefore to give the public memorable, simple knowledge about disease without flattening out nuance that encourages compassion for the afflicted and honest discussion, particularly among at-risk populations.

HIV/AIDS management is likely the most widely studied example of this tension. Almost everyone, including all mainstream advocacy organizations, agrees that HIV infection is undesirable and public health interventions to prevent the spread of the virus are warranted. However, as awareness of HIV spiked in the 1980s, so too did the stigmatization of the HIV-positive. As public health practitioners realized that stigma was undermining efforts at containment (by making at-risk populations less likely to learn their status and discuss it with sexual partners), HIV stigma research and anti-stigma initiatives flourished. In the case of HIV, there is broad consensus among interventionists that stigmatization jeopardizes containment and that stigma itself is a public health liability -- not just collateral damage.

Beyond the public health implications of disease stigma, there is the human rights dimension: discrimination on the basis of HIV status, for example, is unfair and unhelpful and only compounds the quality of life impacts of those living with HIV/AIDS. This argument is however less persuasive when people are perceived to have a choice in the stigmatizing characteristic, that is, when it is seen as behavioral. For example, tobacco control initiatives are not subject to the same level of debate about the stigmatizing potential, notwithstanding evidence that 'social policies exacerbate smoker-related stigma'.

The preconditions for stigma

Link & Phelan argue that 'stigmatization is entirely contingent on access to social, economic, and political power'. That is -- stigma without social/economic/political agency isn't truly stigma, in the sense that it does not further identify, isolate and devalue already vulnerable groups.

Tobacco-control practitioners are deploying stigma as a public health tool in a way that would be unimaginable in the setting of HIV/AIDS, or indeed, any non-tobacco addiction. However, this phenomenon has not historically faced much scrutiny.  It therefore makes sense that criticism of smoker-shaming coincides with strong demographic shifts in smoking patterns. In the last 20 years, smoking has become strongly associated with lower socioeconomic strata that already face obstacles in such arenas as employment, health. Smoking, when seen as a truly stigmatizing habit, risks exacerbating these obstacles, for example, by making smokers less likely to seek healthcare and access resources to quit the habit.

Smoking is therefore an example of how a public health argument against stigma seems to emerge when moralizing turns into stigmatizing by virtue of these power dynamics. The cases of HIV/AIDS and smoking are well-developed examples that stigma is more than just moralizing: it is a self-reinforcing tragedy that necessarily exacerbates existing cleavages and inequalities.

Stigma is not arbitrary: implications for modern social justice

Social justice advocates are inspired by this discourse but often seem to be working outside the thesis that stigma is necessarily tied to attributes that are inherently undesirable. Whether from the perspective of public health or human rights, stigma is problematic. Nobody in the mainstream scholarly conversation, however, denies the public health liability of stigmatizing attributes like HIV/AIDS, smoking or obesity.

Insight into the dynamics of stigma described above are often packaged with the criticism that public health interventions are judgmental and moralizing. Fat acceptance advocates in particular have zoomed in on this as the defining human rights challenge of public health interventions. But because modern fat acceptance rejects mainstream thinking on health implications of obesity, it declines engagement in the deeper conversation on the dynamics of stigma that might give opposition to 'fat shaming' real traction in the mainstream.Whereas there is a real argument to be made against fat stigma from the perspective that obesity disproportionately affects people who are already the least likely to seek help, this argument is in effect short-circuited by a denial that obesity is a negative characteristic.

Conversely, other streams of the social justice movement fail to describe the stigma they oppose as in any way reflective of deeper social tensions. I believe this to be a factor that limits the success of the anti-"R-word" advocates. They are right that it is rude to make jokes at the expense of the disadvantaged, but being a jerk isn't a complex sociological phenomenon in need of an awareness campaign. With respect to the fight against the word "retarded" as a clinical descriptor, I would simply observe that fighting to change vocabulary is futile and arbitrary. 'Intellectually disabled' replacing 'retarded' in clinical usage merely adds a link to the euphemism treadmill that has already seen 'moron', 'idiot', 'imbecile' and 'cretin' pass into everyday use.

Stigma is a complex phenomenon -- to invoke it in the context of social justice should mean to appreciate this complexity, not ignore it.

15 June 2013

The media and risk communication: the case of liver cancer

The incidence of liver cancer in Canada has tripled since the 1970s. If this headline-style statistic causes anxiety, the media may have achieved their goal in a recent spate of news stories.

The CBC and other sources cite a recent report published by The Canadian Cancer Society, Statistics Canada and the Public Health Agency of Canada. The report points out that the incidence of non-metastatic liver cancer has increased substantially since the 1970s as a result of the changing occurrence of known risk factors, notably infection by hepatitis B virus (HBV) or hepatitis C virus (HCV), but also alcoholism, aflatoxin exposure and others.

This is interesting from the perspective of public health managers: if liver cancer rates continue to rise, certain population-level interventions may become worthwhile, for example, screening for HBV and HCV.

However, it is not interesting from the perspective of individual decision-making, because increased rates of liver cancer are explained by known risk factors. Regardless of population-level changes that have caused the incidence to rise, an individual's risk of liver cancer remains the same for a given exposure to environmental and genetic risk factors. In fact, the same report shows that the five-year survival ratio (fraction of cases still alive after five years) nearly doubled between 1992 and 2003, which justifies optimism about the prospects for individuals affected.

News articles mention the risk factors for liver cancer but do not make explicit that the rise in cancer follows from changes in the prevalence of these risk factors that are not in themselves news. The media portray the increase in cancer rates with a tone that would fit better a surge in property crimes or terrorism. Indeed, the very frame of a news article anticipates some response on an individual level; in this case, however, the reader seems left to guess what an appropriate reaction might be.

Wilkins and Patterson have written about this precise phenomenon, noting that the news media treat risk situations "as novelties, failing to analyze the entire system, and using insufficiently analytical language". Some scholars (e.g., TF Saarinen) argue, as I do here, that the media have a responsibility to put news on risk statistics into some larger context . Others (e.g., S Dunwoody) contend that media efforts in this direction have not been successful, and that the media should refrain from adding commentary or providing instruction. However, when news reports on risk statistics do not include any context, commentary or instruction, it is far easier to indulge in sensationalism. Indeed, Wilkins and Patterson note that 'a journalist's definition of a good news story means a catastrophe for someone else.'

Reader comments on the liver cancer story show how the public reach for explanations obviously bound up in their own worldview and preconceptions when faced with such a lack of context (see samples below, copied from the CBC story linked to above). In this sense, the news seems to self-sensationalize; it is not necessary for the media to exaggerate the story, but merely to present it without context.

The tendency for people to selectively retain information that confirms their preconceptions is well referenced. So is the public's tendency to overestimate cancer risk, especially as compared to other chronic diseases. The public are notoriously blasé with respect to their perception of disease risk, but cancer has a mythology that often reflects deeper skepticism and resentment of technological advance and a scientistic culture. These factors combine to make cancer risk communication a uniquely sensitive topic in terms of media treatment.

Reader comments range from muddled remarks on increased exposure to 'toxins' to specific attributions of increased risk to the use of nuclear power. Public suspicion of nuclear power has been central to the stagnation of this source of fuel in the US, which it suffices to comment, has been bad from a public health perspective, and probably from an environmental perspective, too (depending on semi-philosophical valuations pertaining to long-term management of nuclear waste). Disease outbreaks attributable to the anti-vaccination movement are an even more tangible illustration of the power that misplaced distrust in technological interventions can have on the public.

The vaccination and nuclear power sagas show that vocal minorities of skeptics can have large externalities. Research on the cultural associations of cancer has shown the high potential for an emotional, techno-skeptic response to a perceived increase in threat, and research on risk perception has shown that cancer is particularly likely to draw attention. Meanwhile, the media seem to benefit from a lack of consensus on their responsibilities in risk communication to generate interest in their content -- interest that would vanish if the public knew the underlying facts.