Abstract
This article examines how lay people’s response to risk can be shaped by their relationships with activists, by revealing the dynamics behind publicly expressed concerns. To do so, the article analyses data from the participant observation of ‘ban-asbestos activism’ in South Korea, as well as from interviews with activists and patients who are deeply involved in that activism. Operating from an understanding of lay people as a heterogeneous group of constantly interacting actors with a diverging understanding of, and concerns about, risks, this article shows that patients’ concerns about asbestos risk have been marginalised by the activists involved in ban-asbestos activism. In translating individual disease experiences caused by asbestos exposure into a risk faced by the general public by extracting generalisable data, activists’ popular epidemiology has largely disregarded patients’ voices that are rooted in the lives lived with ill bodies. In this regard, this is similar to the epidemiological studies conducted by the government. Thus, this article argues that a power relationship exists between activists and patients within the ban-asbestos activism, similar to, if not identical to, that of the expert–lay relationship. This study emphasises the importance of regarding bodies—that is, bodily experiences of living with illness—as valuable evidence in risk governance and policy.
Introduction
Yet, who are lay people? In science and technology studies, the problem of analysing lay people and their relationship with experts has been an important project, especially in regard to democratic policy decision making which involves scientific inquiries. While the term lay people indicates people who are not equipped with scientific expertise—the general public, local people, patients and so on—numerous scholars have argued that these people have a legitimate knowledge that can contribute to the production of scientific knowledge and, thus, are entitled to participate in decision-making processes (Irwin, 1995; Irwin & Wynne, 2003 [1996]). Case studies on occupational and environmental hazards and related health problems of the affected population have served as particularly important proofs of this argument (Brown, 1992; Murphy, 2006; Wynne, 1989).
In supporting lay people’s initiative and participation in knowledge production and knowledge politics, when a group is called ‘lay people’, it has been often described as rather homogeneous and harmonious group against the authoritative experts or government institutions. For instance, a case study of ‘popular epidemiology’, that is, epidemiological health investigations that local people initiated and were deeply involved in, described the clear contrast between lay people (and supportive activists and scientists) and government agencies and experts in terms of their perceptions of standards of proof, uncertainty and science (Brown & Mikkelsen, 1997 [1990]). To study lay people within this dichotomous framework, however, may lead us to ignore the diversity and disparity within a group called lay people and pay attention only to ‘a huge gulf’ between the two parties’ perspectives on, and reactions to, risks and hazards (p. 146). In addition, it can lead us to undermine how interactions with sympathetic activists and experts can affect lay people’s understanding of risks and problems associated with their side. In other words, understanding lay people only within their relationship with the experts (and those with authorities) does not reveal what shapes lay people’s response to risk.
In this article, I understand lay people as a group of local people or patients with varying concerns, problems and situations. Also I understand that they are in constant interaction with the activists and sympathetic experts as well as other lay people. By situating lay people within such a complex web of connections, we can glean insights into why lay people respond to risks in a particular way and why certain agendas become important while others do not. What would be the relationship among the various groups participate in local initiatives, for instance, in popular epidemiology? In what contexts or on what problems would these groups agree and disagree? With what process are diverging concerns and problems prioritised and finally become political and policy agenda? Whose voice conveys more authoritative power than the others? In asking these questions, this article is most interested in the discrepancies within rather heterogeneous groups of people lumped into the term ‘lay people’.
The question of interactions and possible conflicts within a lay group is particularly pertinent to the asbestos case in South Korea, where there is a great diversity in terms of the interests and problems that are faced by various related parties. Ban-asbestos activism in South Korea began in the first decade of 2000s and is closely related to the characterisation of asbestos as an environmental risk. In the mid-2000s, this ‘deadly dust’ and one of the oldest occupational hazards was found outside the factories along with the numerous patients of asbestos-related diseases whose exposure had no relation to their work history. While ban-asbestos movement was initiated by a handful of environmental activists, soon labour activists, occupational health experts and occupational and environmental patients, whose diseases ranged from relatively light to severe, joined this movement to make asbestos a national policy problem
This article will begin with a detailed description of a press conference held by ban-asbestos activists on the asbestos risk and compensation policy, as both ‘articulation space’ and ‘public drama’ (Hilgartner, 2000; Kuchinskaya, 2014). Just as experts’ scientific advice for public policy making is described as ‘public drama’, lay people’s response to risks, especially expressed in public spaces—such as public forums and press conferences—can also be seen more or less as a stage act. Both expert advice and publicly expressed risk responses have the same purpose, that of persuading the audience and making them allies. To deliver a unified message, a process of agenda selection among heterogeneous groups of people with diverging problems, concerns and expectations is required behind the scenes. Thus, such public spaces provide an interesting place to observe how lay people’s risk perceptions are shaped in what kind of contexts. By analysing lay people’s expression of risks on stage, as well as the voices both heard and not heard, this article will show that the power relationship between experts and lay people could be reproduced within the activism, this time between the activists and lay people. I will argue that preference of objective and generalisable data and the use of the general public as a rhetorical tool by the activists within ban-asbestos activism in South Korea have resulted in the marginalisation of patients’ concerns in asbestos risk governance. By revealing invisible patients’ concerns based on the interviews, I will also argue the importance of incorporating the bodies—bodily experiences in living with illness—as valuable evidence in risk governance and policy making. By doing so, this article aims to provide an empirical account of the complicated nature of lay peoples’ response to risks and risk governance.
Methodology
This article is based on the participant observation of ban-asbestos activism in Korea led by Ban Asbestos Network Korea (BANKO). Established in 2008 as a network of non-governmental organisations (NGOs), environmental and labour activists, patients and families of asbestos-related diseases and sympathetic experts, this organisation played a major role in the legislation of the Asbestos Injury Relief Act of 2010 and remains the most vocal civic group in regard to the problems of asbestos pollution and patient compensation. Recently, however, there are inside concerns that the Network as a whole has greatly lost its driving force after a successful legislation in 2010. When I began my field research in 2014, the interests of many initial participants of BANKO, including labour unions, have significantly dwindled, leaving a handful of environmental activists, experts and patients as major players. Against such a backdrop, the contribution of environmental activists of Asia Citizen’s Center for Environmental Health (ACCEH) to the activism becomes especially significant. They not only played a central role in a very early stage of BANKO but also persisted in fighting the asbestos problem. Their great ability to engage with the media and policy makers has given them a leading role within the whole activism. I participated not only in various events held by BANKO and associated NGOs and patients’ groups but also in public forums held by the government ministries and the National Assembly. I also interviewed twenty major actors, including activists, experts, patients and others who have a significant relationship with the asbestos risk management policies. I recorded and transcribed the interviews for analysis with the consent of the interviewees. In this article, I use alphabet letters to indicate the patients I interviewed, except those patients I quote from public speeches.
Asbestos, an Old and New Environmental Concern in South Korea
Asbestos was mined, manufactured and used widely in South Korea since the early twentieth century. For long, it has been an industrially salient material used especially in construction and the manufacture of industrial plants, automobiles and ships, all of which led to Korea’s industrial development. Concerns about its toxicity followed later. In the professional’s circle of occupational hygienists, asbestos has been regarded as an important occupational hazard, yet that knowledge gained little awareness or response from either the public or the policy makers (Ahn, 2008). Since the 1990s, however, asbestos has been increasingly recognised as an environmental risk, especially by leading environmental activists. The changing social character of asbestos from an occupational hazard to an environmental risk is well reflected in media reports. Until the early 1990s, asbestos was reported in relation to occupational safety, but since the mid-1990s, its dangerous effects as an environmental risk have been emphasised in the media, not only on labourers but also on the general public (Park & Park, 2015). Social activism has played an important role in granting a new character to asbestos as an environmental risk. This activism began with one patient’s struggle to receive worker’s compensation; it then expanded to a nation-wide network of activists, experts and patients, and finally into the BANKO.
By effectively and simultaneously creating social pressure and working closely with the policy makers, ban-asbestos activism has contributed significantly to creating a compensation law for asbestos patients (Kang & Lee, 2015). The purpose of the Asbestos Injury Relief Act is ‘to redress damages to health caused by asbestos in a prompt and fair manner’ mainly by providing monetary compensation for the medical, living and funeral expenses to the patients who have at least one of the four specific asbestos-related diseases that are designated by the law. 1 The Committee for Determination of Asbestos Injuries comprising ten committee members with more than five medical experts reviews an epidemiological survey and medical records to examine the relationship between the disease and asbestos exposure. Importantly, the Asbestos Injury Relief System excludes ‘the persons who are eligible for benefits under the Industrial Accident Compensation Insurance Act’, or occupational patients, as they are now commonly referred to. 2 Now, these two compensation regimes have become indispensable intermediaries making the patients with asbestos-related diseases to become sensible of and describable of asbestos risks and policy issues (Kuchinskaya, 2014; Petryna, 2002).
After the 2010 legislation, there are inside criticisms that the movement has lost its motivational power, since the contribution of labour unions and labour health activists to ban-asbestos activism has significantly waned. Regardless, the movement continues its activism and remains the most influential non-governmental sector in asbestos risk governance. There are mainly two directions of activism. On the one hand, BANKO continues its support to patient organisations. In many senses, BANKO has provided a space for patients, providing not only physical place and occasions for patient gatherings to share information and organise collective action but also venues to express their interests and concerns. It also supports patients by engaging with policy reforms and by arranging direct conversations between patients and policy makers. On the other hand, BANKO continuously raises the problems of asbestos contamination and management by performing field investigations. Conducted by the environmental activists, the results strongly suggest that our living spaces are not safe from asbestos exposure. These field investigation results are published in a report format online and spread through the media. 3
In fact, active engagement with media is one of the characteristic features of ban-asbestos activism in South Korea. 4 Among others, the press conference is an important venue because local people from asbestos-contaminated towns or who are patients with asbestos-related diseases can express their concerns directly to the media. The division of labour is clear between the activists and experts on the one side and the patients on the other; while the activists and experts identify problems and suggest solutions mostly based on their field investigation or policy analyses, the patients support the activists and experts by narrating their situations and experiences. In the following section, one of the press conferences will be described in detail and how activists and patients articulate problems of asbestos risk and its governance will be shown.
Expressing Concerns with Asbestos Risk: At a Press Conference
On 9 July 2014, the activists of BANKO, ACCEH and some patient representatives held a press conference at ACCEH office in Seoul, where their display was full of asbestos-containing rocks and products, along with some other domestic toxins. Two environmental activists and two patient representatives sat side by side in front of the reporters. Each of them had a nameplate indicating names, affiliations, and where they were from: ‘Yeyong Choi, PhD in Public Health, Chief of ACCEH’, ‘Hyunsik Jung
The press conference was planned into two parts: a presentation by the activist Yeyong Choi and presentations by two patient representatives. Choi began by presenting ACCEH’s recent report, Analysis on the Korea’s Asbestos Injuries, which was published that same day through ACCEH’s website (Asia Citizen’s Center for Environment and Health [ACCEH], 2014b). Choi is an environmental activist who received his PhD in public health in 2013 from Seoul National University for his dissertation on the international transfer of the asbestos industry, which is tightly connected to his activism. The key of this report is their analysis of the statistics about patients who received compensation according to the Act; these statistics were provided by Korea Environment Corporation, the public enterprise entrusted with running the system of compensation.
Activists’ Concerns
The messages of activist Choi’s presentation were straightforward. First, asbestos was and would continue to be a serious environmental health problem in South Korea. According to the official statistics, there were 1,426 people who were officially ‘approved’ as having an asbestos injury as of June 2014, a number expected to increase. On the one hand, because asbestos-related diseases tend to have a long latency period, they estimated that the number of patients would increase at least until 2030, about four decades after its use is legally banned. On the other hand, because of the asbestos life cycle—mining, manufacturing, usage and disposal—the pollution would spread from mines and factories to local communities and the general environment (Figure 1).
The activist also pointed out four ‘distinctive features of asbestos pollution in Korea’ that are worsening the asbestos pollution. The first one is ‘a large scale state-wide use of asbestos’ during the modernisation in the 1970s that ‘cannot be found in other countries’. Second, the widespread urban redevelopment projects in the last two decades have caused asbestos exposure, as they require massive deconstruction of old buildings built with asbestos-containing materials. The third aspect is the recycling of the construction wastes, or ‘recycled aggregate’, which is highly likely to contain asbestos. Lastly, the use of asbestos-containing rocks from quarries nearby closed asbestos mines across the country mainly for landscaping purposes. Choi remarked that ‘because of these problems’, he believed, ‘there would be much severe damages from [asbestos] exposure’ in South Korea compared to that of other countries. By calling the asbestos problem ‘the largest environmental disease problem in Korean society caused by a single pollutant’, the activists of BANKO used this press conference as a springboard to raise—or regain—the attention of the media, public and policy makers to the asbestos problem.
The second message, that the Asbestos Injury Relief System needed to be improved, was the main purpose of this press conference. Based on their analysis of the official statistics of the recipients, Choi identified two problems: low approval rate and high proportion of occupational exposure among the recipients. The problem with the approval rate is the problem that has been pointed out since the first year of the law’s enactment (Ban-Asbestos Korea [BANKO], 2011; Kwon, 2012; Mok, 2012). The statistics showed the overall approval rate is 65.5 per cent and the trend continues downwards. Choi argued that the review process for the relief fund is too conservative to question whether the system had accomplished the original goal of providing compensation to patients affected by asbestos pollution. More importantly, 64 per cent of the survey respondents answered that they had experiences of asbestos exposure at their workplaces. This was considered a significant problem because it indicates that a number of ineligible people were receiving a lower amount of compensation by receiving environmental, not worker’s, compensation. 5 In sum, the activists of BANKO found from the statistical analysis that there are serious problems with design and execution of compensation policies.
Patients’ Concerns
The activist’s presentation was followed by talks by the two patients’ representatives, Hyunsik Jung and Dongwook Hwang. Jung and Hwang’s cases supported the problems identified by Choi, especially regarding occupational exposure among the environmental compensation recipients. Both Jung and Hwang’s deceased father had work experience in asbestos-dealing industries—asbestos wick manufacturing and construction—but received only the relief fund, or ‘environmental relief’ in commonly used terms, not worker’s compensation. Because the patients were regarded as cases of the problems raised by the activists, they were given a relatively short time; in a 1-hour press conference, the patients’ presentations were only about 15 minutes. In this short time, the patients narrated their relationship with asbestos—through exposure, disease, medical treatment and compensation policies—using factual, interpretive and emotional descriptions.
For instance, Jung began by describing his work experience, where he directly handled asbestos raw materials. He worked at a company manufacturing wicks for oil heaters or cooking stoves which were widely used for domestic purposes before gas lines were widely installed in urban areas. He described the factory’s working environment, where he worked as a clerk but had to occasionally help in manufacturing, as ‘a complete mess’ because of the asbestos dusts that sprinkled ‘just like it is snowing’. Then he expressed the pain and despair as a patient of malignant mesothelioma, the most serious asbestos-related cancer. 6 Although ‘it is a miracle to live for eight years’, he had gone through very painful medical treatments, including three surgeries and twenty-one chemotherapy treatments. Having these treatments, he said, ‘feels like to kill myself for three or four times’. Because of his fragile condition, he had ‘given up, as a matter of fact, further treatments’. Lastly, he expressed his problems with the divided system of compensation for asbestos injuries, pointing out that he was only able to receive ‘the environmental’ compensation, meaning Asbestos Injury Relief Fund, not worker’s compensation, ‘because it has been so long’ since he worked at the company and ‘because there is no evidence’ of his employment. He announced that recently he was preparing to apply for worker’s compensation, which is as difficult as ‘picking stars in the sky’. However, he expressed that his effort is not for his own sake; it was rather for the other patients who are in a similar situation with him. Jung added that to live with malignant mesothelioma is ‘alive but not living’.
While Jung focused on his experiences and pains, Hwang pointed out more practical issues from the perspectives of a patient’s family. One important issue was the problem with diagnosis of asbestos-related diseases. He stated the difficulties his father had getting a correct diagnosis of malignant mesothelioma:
Hwang: First symptom appears like lungs are filled with water [fluids]. So when [my father] first visited the hospital, because the symptoms are similar to that of tuberculosis, most doctors start tuberculosis treatment[sic]. [My father] received the tuberculosis treatment about four months and had no improvements, so [the doctor suggested] to visit a larger hospital and get more thorough examinations. So after getting biopsy, [my father] finally realised that it was the mesothelioma cancer.
‘The problem here’, he continued, ‘is that doctors in South Korea do not know well about malignant mesothelioma.’ In fact, misdiagnosis is more than common to patients of asbestos-related diseases. In many cases, they are misdiagnosed with tuberculosis as in the case of Hwang’s father, or just lung cancer without questioning the diseases’ connection to asbestos exposure (Ahn, 2008; S. Lee, 2009; E. Park, 2013).
Another issue Hwang pointed out was the very limited service—or no service except monetary compensation—provided by the Asbestos Injury Relief System. Based on his career as a social worker, he emphasised the welfare approach. Defining asbestos-related diseases as ‘permanent disabilities caused by damages in organs’, he emphasised the need for both physical and social assistance to patients and families because it is not just their body that is damaged but also their social life.
To summarise the speeches, both the activist and the patients expressed their concerns with the asbestos risk governance, particularly as it relates to the compensation system. As clear as their division of labour was in delivering the press conference, however, their concerns and ways of describing them differed a great deal. In terms of the content, the activist was more concerned with the risk of asbestos exposure to citizens. Problems with the two compensation systems for asbestos injuries—Asbestos Injury Relief System and worker’s compensation—as identified based on the statistical analysis were also an important issue. The patients, however, pointed out more diverse issues; in addition to the problems with the compensation system, they pointed out problems in medical treatments, diagnoses and the need for a broader care of patients’ lives, not as an alive being but as a human being. The detailed descriptions and quotations of both the activist’s and patients’ talks revealed that different approaches are taken to make their arguments persuasive. While the activist argued by drawing on generalised statements—for instance, characteristics of asbestos pollution in Korea or patient statistics—the patients depended on individualised statements about experiences, thoughts and emotions embedded in their ill bodies.
Activists’ Translation of Patients’ Voices
The patients’ speeches were not, however, delivered without interruptions. The activist was actively engaged with the patients’ talks by translating the individual experiences into generalised and contextualised evidence. Here, I borrow the term ‘translation’ from Bruno Latour’s Science in Action (Latour, 1987). In explaining how scientists and engineers build their research and technological artefacts ‘from weak points to strongholds’, he says it is necessary to engage the others in a fact-building process and have more control on them. He defines ‘translation’ as ‘the interpretation given by the fact-builders of their interests and that of the people they enroll’ (Latour, 1987, p. 108). The activists in ban-asbestos activism have the same purposes as the scientists and engineers in Latour’s work in building their position ‘strongholds’ as fact speakers, in that they are in epistemological rivalry with authoritative institutions, including the scientists and government institutions.
The purpose of the activist’s translations in the press conference is to transform the individual experiences to better fit the activist’s concern—considered, and argued by the activists, as the concerns of the general public—that asbestos is a serious environmental risk. This particular method of interpretation involves three tactics. First, by adding extra information, the activist delineated more general contexts of asbestos exposure. In addition to providing the audience a better sense of what asbestos is, he suggested how each case is not unique only to the patients. For instance, after Jung talked about his work experiences in dealing with asbestos, the activist added an explanation on the wide usage of asbestos products:
Choi: For reference, although it is not used anymore but in science laboratory classes in elementary and high school, we used to put a net above alcohol lamp to put a beaker on. Center of the net was white, wasn’t it? That was asbestos. Also a wick of alcohol lamp was asbestos. In such ways, general citizens [were exposed to asbestos]. Now we use natural gas in house for cooking, but back then [when J worked for the factory] cooking stove using petroleum oil and an asbestos wick was widely used.
Here, the activist suggested familiar places like school and house as spaces where ‘general citizens’ could face a risk of asbestos exposure. Thus, the activist translated individual experiences into a collective one, emphasising how general and widespread the asbestos exposure has occurred in the past, and presumably during the present and in the future, too.
The activist also mobilised artefacts to support or prove the patients’ stories. The purpose is to show what asbestos products are and how seriously the patients’ lungs are damaged. A particularly important one was a radiological image of Jung’s chest, which was projected on the screen when Jung talked about the cancer treatments he had received. Choi translated Jung’s illness as an experience expressed in his subjective narratives by showing the radiological image and indicating the chemotherapy device and signs of asbestos exposure in both lungs—the ‘whitish parts’—as facts that can be observed and witnessed by the audience. The use of this technological representation transformed the subjective illness experiences—pains, difficulties in breathing and chemotherapy—into objective facts the audience could witness. 7 The use of radiological image in the midst of the patient’s talk, however, drove the audience’s attention away from the patient himself and to the technological representation of the patient (Figure 2). The activist’s involvement of the audience also resembles how scientists engage witnesses in scientific fact-building process (Shapin & Shaffer, 2011 [1985]). By involving the audience—reporters and the readers of the news article—in witnessing the physical damages asbestos caused to the patient as represented in the radiological image, the activist tried to build a strong argument in this press conference.
Lastly, the activist restructured the patients’ stories into an epidemiological narrative, focusing on the time and duration of exposure, latency period and disease occurrence. In doing so, the activist built the causal relationship between the exposure and the disease in a historical manner:
Choi: Jung was born in 1954 and he is sixty-one years old this year. As mentioned, for six years from 1978 when [Jung was] twenty-four years old, [he] worked at a small factory called Chokwang Industry in Bucheon, Gyeonggi Province, a company producing wicks for heaters and cooking stoves from asbestos raw materials. . . . Even though he was a clerk of the company, he often took part in manufacturing process to help and at those times he handled asbestos and exposed to it, we suppose. We see that as a primary exposure. In 2006, at the age of fifty-two, [he was diagnosed with] malignant mesothelioma, which is ‘the asbestos cancer’. Malignant mesothelioma is a unique cancer caused only by asbestos. So, it is suspected that there was twenty-eight years of latency period at most from the primary exposure. And then, after working in this company for six years, Mr. Jung worked in construction sites in 1986 for a year, and construction sites are also a very important place of asbestos exposure. Asbestos construction materials are used a lot. So it is suspected that latency period from the secondary exposure is twenty years.
When the activist explained Jung’s history in terms of asbestos exposure, he used a pre-made diagram of this epidemiological narrative. While it will be explained in detail in the following section, building an epidemiological narrative involves conversations between activists and patients on work experience, residential environment, family history and diseases. The final outcome is often expressed in timeline-like diagrams that imply how the patients’ exposure to asbestos is connected to a larger historical context; thus, anyone could be exposed to and injured by asbestos. In this epidemiological narrative and diagram, the patient’s relationship with asbestos in work, life, disease and pain is simplified as exposure and its deadly consequences.
The activist’s translation gave rise to the emphasis on the generalisation of the patients’ cases. The activist’s translation omitted certain issues raised by the patients. For instance, Jung’s pain and despair coming from his ill body was rather expressed in a simple factual statement: ‘Just like he mentioned, Mr. Jung received twenty-one times of cancer treatments and three times of surgery after he was diagnosed with the cancer.’ On Hwang’s problems with misdiagnosis and limited monetary compensation, the activist simply added, ‘Such problems with the system should be improved immediately.’
In effect, the activist’s translation moved the interest of the audience away from the patients themselves, which was also reflected in the media reports on this press conference. Most news reports plainly explained the activist’s statistical analysis: ‘1.4 thousands patients have officially approved as asbestos-related disease. Rate of approval is in a lowering trend’; ‘Low percentage of occupational asbestos exposure cases are approved as “worker’s compensation”. Overall approval rate also decreases’ (Y. Jung, 2014; J. Kim, 2014; S. Kim, 2014). They also commonly emphasised that the risk of asbestos exposure not only is a problem of the past but will also continue in the future: ‘Asbestos fear expected to continue more than 70 years’ (H. Choi, 2014). From these media reports, it is evident that the activist’s concerns were regarded as more important than the patients’ concerns. Patients who were present in the press conference with their ill bodies as evidence of asbestos risk were not considered persuasive enough, either by the activists or by the reporters. After all, the main voice of this press conference was the activist’s, not the patients’.
Behind the Scenes: Contextualisation and Generalisation of Risks
The activist’s and the patients’ concerns as expressed in the press conference were not without foundation but were the result of analysing patient interviews and field investigations on asbestos contamination. Behind the scenes, environmental activists play an even more significant role in shaping arguments of the movement as a whole by translating each patient’s case. Mainly, activists build exposure scenarios showing how exposure to asbestos can occur in the common environment. These scenarios are developed based on the popular epidemiology performed by the activists (Brown, 1992). The activists first try to build a narrative of exposure through conversations. The questions a patient is asked range from basic information (name and year of birth) to diagnosis (name of the disease, year of diagnosis, hospital where the patient was first diagnosed and the doctor who made the diagnosis), symptoms (type and number of cancer treatments received, year of surgery, current symptoms and physical difficulties and side effects from treatment or surgery) and suspected exposure context (work and residential history). The conversation between an activist and a patient often involved more than these questions. When a patient answers, he tells various experiences, including the problems with diagnosis, compensation and work environment, or cases of their close acquaintances who also have asbestos-related diseases. Based on such conversations, activists uncover some clues about how the exposure occurred and discover exposure sources that were unknown.
The patients’ stories are backed up by field investigations of contaminated sites. Field investigation has been one of the important strategies of ban-asbestos activism, in a belief that the activists should be equipped with expertise enough to produce their own data independent from the experts. 8 Field investigation has significant values in its own right to the activists, as it shows asbestos contamination in day-to-day spaces rather than known sources of asbestos exposure, such as factories and mines. It was performed frequently and covered various places; forty out of fifty-five asbestos reports published by the activists since 2009 deal with the field investigation performed in the urban redevelopment construction sites, public schools, US Army base, zoo, baseball parks, hospitals and urban river-banks. 9 Some cases are contextualised in a larger history. For instance, asbestos exposure of mesothelioma patient Hyungsik Choi was correlated with the history of urban environment, especially with the large-scale redevelopment projects of old towns in numerous cities in South Korea since the 1990s (ACCEH, 2014a). Since then, urban redevelopment has become an important pattern of asbestos exposure, which is unique to South Korea.
The result is often drawn in a timeline-like diagram in which a patient’s life is simplified into asbestos exposure, disease and the historical factors that enabled such exposures. Frequently appearing in the activists’ reports, press releases and public presentations, this diagram is very straightforward for readers to understand when, where and how exposure occurs. With this rather simplified diagram, activists build a causal relationship between the suspected exposure sources and a patient’s disease. In this way, patients of asbestos-related disease become an embodiment of rushed development without proper management of urban pollution and ill-designed public health and welfare policies. They also become an embodiment of Korea’s industrial development and the international transfer of hazardous industries from developed to developing countries. The strength of the exposure scenarios is that they generalise the risks; anyone who lived or lives nearby urban reconstruction areas is at risk of contracting an asbestos-related disease. This is precisely the activists’ purpose. Collecting and contextualising patients’ exposure histories are important because ‘It means this is not a rare case. It means anyone can be like him’, as one activist said. 10
The exposure scenarios devised by the activists deliver a message completely different from the government epidemiological study. Most noticeably, activists focused on an individual case in a historical manner, whereas the government’s epidemiological study took a population-based approach by statistically analysing cohort groups in regions known to be highly contaminated with asbestos. In the report of the government-led epidemiological study conducted from 2008 to 2010, ‘Basic Research for the Assessment of Health Impacts from Asbestos Exposure of Residents Near Asbestos Mines and Factories’, the research method was to investigate the level of contamination and the health conditions of the residents in towns nearby asbestos mines and asbestos textile factories. Specifically, the health examination aimed to discover the local residents’ health conditions and statistically examine whether they were related to asbestos exposure. Thus, the final outcome was explained heavily in statistical terms (Ministry of Environment, 2009, 2010).
Another important difference between the government report and the activists’ exposure scenario is the approach to causation. Contrary to the activists’ generalised risk message, a group of medical experts, mainly occupational hygienists, was very cautious in building a causal relationship between the high occurrence of lung diseases and asbestos exposure. In the ‘Basic Research’ report, the authors tried to build correlation, not causal relationship. Readers are warned not to interpret the high rate of pleural abnormalities observed in radiological examination as all caused by asbestos exposure, while simultaneously admitting the high-dose exposure in these towns. 11 By cross-examining a group of people who received a general health check-up with the local people of targeted towns, the authors tried ‘to explain that not all doctors’ opinions on abnormalities of lung parenchyma or pleurae 12 from plain radiographs are caused by asbestos exposure’, by showing that lung abnormalities were found in a certain percentage of the control group, too (Ministry of Environment, 2009, p. 217). They also identified the use of High-resolution computed tomography (HRCT), a radiological technique that provides chest images with higher resolution than the more traditional and widespread method using X-rays, as one of the contributors to the high rate of asbestosis particularly in asbestos mining towns.
That study conducted by an expert group at the request of the Ministry of Environment in 2008–2010 is particularly important because of its influence on the legislation of the Asbestos Injury Relief Act in 2010. The shocking result of this study was that in more than 110 people out of 215, lung abnormalities were found in chest X-ray examinations, and 87 people out of 95 who received a further examination with HRCT were diagnosed as having asbestos-related lung diseases (Ministry of Environment, 2009). This epidemiological study and the fierce public response to it was probably the most important factor that enabled the legislation of the compensation law to be passed in 2010 (Kang & Lee, 2015; K. Lee, 2011).
The comparison between the approaches taken in the government epidemiological study and ACCEH’s popular epidemiology study to understand the correlation between exposure and disease shows two different ways of establishing facts about asbestos damages. Activists in ACCEH believe that there can be different truths. They argue that the stories, details and contexts obtained during the investigation process allow a more profound understanding of the exposure and its relationship with diseases than do the statistical data.
Lim: [In addition to the] Data that we have, there is also the process of getting those data. It is possible to know how physical damages occur, and stories of about them. If there are one hundred cases reported to us, we know [stories of] each person. Numerically it is simply one hundred people, but there is more than just a number in those one hundred cases. … It means our data is more credible. … Such details play a very powerful role. 13
With these details, the activists claim that their version of truth based on patients’ testimonies is different from, and would be superior to, the official truth by the government.
Regardless of the different approaches to build causation and truth, the expert epidemiological study and the activists’ popular epidemiology, however, have in common in that both pay more attention to epidemiological facts that can be extracted, one from surveys and statistical calculations and the other from patients’ stories. Government experts and activists commonly regarded the patients’ narratives and their concerns expressed in a subjective manner as less persuasive, compared to generalisable facts whether those are expressed in the data of statistics or in the exposure scenarios. The result is that patients and their voices, bodies and lives are marginalised.
Still Unheard: Locating Patients in Asbestos Risk Governance
Why are patients marginalised even within the activism supporting them? One possible answer can be related to the power relationship between activists and patients. In their relationship with activists whose expertise lies in technical analysis and political negotiations, the patients are both empowered and marginalised at the same time. In an interview, patient H strongly expressed the uneasy situation of the patients in terms of the relationship with the activists. While he criticises that ‘the activists take advantage of the patients to make issues’, and sometimes patients ‘see themselves doing as they are told by the activists’ in order to have negotiation power or ‘to change policy, it is impossible not to work with the experts [the activists]’. 14 Patient H’s complaint reveals that experts and activists have a greater authority in framing what is an important problem within the activist group. It also indicates that the expert–lay relationship in asbestos risk governance in South Korea cannot be simply understood. The authoritative relationship between experts and lay people is reproduced within the social movement group. After all, activists are the new experts to the patients.
The meaning of expertise in the history of environmental activism in South Korea gives some clue about why the expert–lay power relationship is restructured within the activist movement. The political democratisation in 1987 changed the meaning of expertise from the possession of authority to the tools for social change. Nascent environmental activism was especially an active supporter of scientific expertise. The young, college-educated environmental activists—who mostly majored in science and engineering—emphasised the ability of the activists that is equal to that of scientists to measure, analyse and interpret environmental pollutions and their health effects. Later on, many of this particular generation of environmental activists pursued further education in science. This history tells that Korea’s environmental activism is very keen on the role of experts within the society (Kim & Kim, 2013; Lee, 2012; Shin, 2007). The preference for ‘objective’, and thus generalisable, data by expert activists, which they believed to help establish themselves as experts, gives authoritative power to the activists in their relationship with the patients. In that way, the activists’ approach to the patients’ voices was not different from that of the government’s epidemiological study.
However, what strengthens the marginalisation of the patients’ voices by the activists is their emphasis on the risk that the general public is facing. By defining asbestos as ‘our common problem’ rather than a problem of specific groups, the interests of the patients and the inherent politics in risk governance are obscured in the activists’ discourses. Thus, in asbestos risk governance, the pursuit of the public good results in the marginalisation of the patients or of the smaller group of people whose lives are inextricably linked with risk itself. It is so in nuclear governance, too. In her case study on South Korea’s nuclear governance, Hyomin Kim (2014) argued that while the ‘old’ technocratic nuclear governance coexisted with the ‘new’ governance with more tools for public engagement, such as the referendum, the separation between general public and local people has been sustained and reproduced throughout the history of nuclear governance in South Korea. Interestingly, she showed how both the government and the environmental NGOs used ‘the general public’ as rhetorical support for opposing arguments on nuclear power plants. On the one hand, the government continued their push for more nuclear development based on the argument that the general public supports and needs more energy. On the other hand, NGOs proclaimed that the anti-nuclear movement has expanded from ‘local residents and environmental organisations’ to ‘more diverse classes’ after the Fukushima accident, but that it remained apathetic to the problem of economic compensation to the local people, as Kim pointed out (re-cited from H. Kim, 2014, p. 274). The emphasis on the general public’s interest by both the supporters and opponents of nuclear energy surprisingly resembles the way activists framed the asbestos risk. In both nuclear energy and asbestos cases, the problems faced by the locals and the patients—pain and despair, presence of physical hazards nearby and economic concerns—were overshadowed by the general public’s fear and were defined as ‘their problem’ (H. Kim, 2014, p. 277).
Furthermore, the use of the ‘general public’ as a rhetorical tool is one of the internal criticisms of Korea’s social movement. Jongkwon Jung (2000) pointed out that naming different kinds of social movement as ‘citizen’s movement’ has an ‘ideological effect’ that values public good over conflicting interests between different classes. Jung argued that the adoption of ‘citizen’s movement’ discourse in the 1990s is fundamentally rooted in the particular social class, the middle class. By transforming the interests of the middle class to a national policy matter as if the middle class represents all people, he criticised, the discourse of the ‘citizen’s movement’ has restructured the class interests and structural problems as a sub-category of, ‘the public good.’ Activists in the ban-asbestos movement who have internalised this ‘citizen’s movement’ throughout their career should not be free from this criticism. Although the class issue is not evident in the asbestos case in South Korea, it is clear that interests of a particular group—in this case of different patients groups and local people—are regarded less important than the interests of the general public, or ‘the public good’. The activist’s translation was to transform one’s interests as a patient into a public good, and in the process some of patients’ interests are marginalised.
Incorporating Bodies, Voices and Lives of Patients in Risk Governance
The problem of the unequal power relationship between activists and patients originating from the activists’ expertise and the rhetorical tool of ‘general public’ is that it could lead to weakening of the movement itself. The relative inattention to a patient’s practical concerns over the general issues regarding asbestos is not irrelevant to the conflicts between the activists and the patients within Korea’s ban-asbestos movement, as it was described above in the words of patient H.
More importantly, marginalisation of the patients’ voices shows the need for more diverse and frequent ‘articulation spaces’ and participation channels for lay people in asbestos risk governance (Kuchinskaya, 2011). Ban-asbestos activism supported the patients in terms of participation, although not all patients’ concerns were expressed. It should be noted, however, that there are very limited institutionalised channels for gathering patients’ opinions regarding the Asbestos Injury Relief System. The official way to hear patients’ opinions occurs in ‘Environmental and Ecological Excursion’, a gathering of patients in every spring and fall supported by the Ministry of Environment where the officers of the Ministry and the Korea Environment Corporation participate to hear patients’ opinions. The problem is that only patients with lower-degree asbestosis with relatively light symptoms can participate in this excursion, considering the physical constraints faced by patients of lung cancer, malignant mesothelioma and severe asbestosis.
Some patients also argue that the government discourages the participation of patients in asbestos risk governance by legally preventing interactions among the patients according to the Personal Information Protection Act, which prohibits government agencies from providing someone’s personal information including contact information to a third person. Y, who has been the key patient-activist of the activism and has faced hurdles in organising a patients network, angrily pointed out at one public forum the lack of chances to express patients’ voices in asbestos risk management especially voices related to the compensation system.
Y: We don’t wait, asbestosis patients. . . . It is very urgent matter to find out these people [patients] and help them to find their own rights [receiving compensation], but the reality is on the contrary. Now they told me to talk only for two or three minutes, I think it should be longer. Why? To find the rights. It is not because there is no law. In the Republic of Korea, don’t we have laws? … Who makes laws? You congress people make laws, right? There is a law but the reality does not follow accordingly. . . . They say, in words, asbestos is a carcinogen, dangerous, and lives are at danger. But no one knows without experiencing it. 15
While he was referring to the structure of this particular forum being held by a member of the National Assembly, in which patients are given only a few minutes after hours of greetings by numerous politicians and presentations by experts and activists, his speech indicated the lack of spaces for patients’ voices. J’s statement from years of experience working with politicians, activists and experts recalls the much-forgotten fact that the patients are, after all, the ones who deal with all the difficulties and pains from the very materiality of asbestos inside their bodies.
Paying attention to these unheard patients’ voices will contribute to the improvement of asbestos risk governance. As J mentioned, their experiences in living with their ill bodies are irreplaceable, along with the scientific and analytical words of non-patients. Recently, there is an increasing emphasis on the importance of more human-based approaches to health policy (Biel & Petryna, 2013; Orsini & Scala, 2006). According to Orsini and Scala (2006), an important problem with the current evidence-based approach to policy decision making is that it fails to capture the ‘human dimension of illness’ (p. 113). In other words, with its preference for the seemingly objective and generalisable data over patients’ varying experiences and perceptions of their disease, health and medical policies are dislocated from the realities that patients face in daily life with their ill bodies. Orsini and Scala argued that ‘evidentiary data must take seriously the subjective features of an illness experienced by patients and must be concerned … with the patient’s reintegration into the lifeworld’ (p. 114).
From the fieldwork and interviews, I learned that patients with different diseases have different needs when living with those diseases and the asbestos inside their bodies, to which experts, activists and policy makers do not pay much attention. Patients with malignant mesothelioma, the asbestos cancer that has a poor prognosis, are more concerned with their health condition and receiving better medical treatments. Especially C, the first person officially ‘approved’ by the Asbestos Injury Relief System, had no discontent about the compensation system; rather he said he was ‘thankful’ for it. 16 J, who survived mesothelioma for more than 8 years before his death, had transcendental attitude towards death after surviving critical moments. He often said, ‘I am now all ready.’ 17 What was more problematic for both patients was that there was no established treatment method for mesothelioma patients; after all, their disease has no answer. Recognising the limits of the current medical treatment for mesothelioma, H suggested the need for medical support that includes assistive devices and care for the families, especially considering the economic and emotional crisis that the family of a serious asbestos-related disease patient goes through. 18
Unlike mesothelioma patients who showed little interest in monetary compensations, asbestosis patients, whose disease is less deadly yet gradually damages the respiratory functions, have more issues with the small amount and 2-year duration of compensation provided by the Asbestos Injury Relief System. ‘Feeling discriminated’ compared to the patients of the more serious diseases, such as lung cancer and mesothelioma, asbestosis patient O pointed out that the amount and duration of the compensation is very important because this disease has no cure but is one that worsens and patients live with it for their entire life. Patient O pointed out that even though she would not die within a year because of her disease, her disease makes it impossible to sustain a normal life that includes working and socialising. Another asbestosis patient, S, also commented that he no longer attends social gatherings with friends because a severe cough, a common symptom among asbestosis patients, reveals his illness to his close acquaintances, which he does not want. Both patients O and S argued that even though their monthly allowance is not large, it helps to be independent of their children or others for that matter, at least partly. Thus, they argue, continuous support is much needed. 19
The pains, concerns, dissatisfactions and hopes expressed by these ill bodies deserve more attention. Managing the problem of asbestos risk is inseparable from asbestos patients’ illness and their lives which have been restructured by asbestos. It is essential to find and to locate the rightful place for these patients in the entire asbestos risk governance. Patients, as bodies as evidence of asbestos risk, do not simply point out the problems with asbestos risk governance, ‘but they are also frequently doing so from the point of view of the indisputable materiality of their damaged bodies [emphasis added]’ (Johnston & McIvor, 2004, p. 249).
Conclusion
By examining both on-stage and off-stage practices, this article has argued that the publicly expressed concerns of lay people about asbestos risk are responses shaped by interactions among different groups within the activism. On stage, the activists emphasised the risk faced by the general public and the problems with the compensation system that is based on the statistical analysis, whereas the patients emphasised pains, disappointments, emotions and experience-based policy suggestions. Off stage, activists and patients work together to develop exposure scenarios by combining patient narratives, field investigations and contextualisation of individual experiences to a broader history. What has played a crucial role in both processes was the activists’ translation; the activists’ interpretation of each patient case in a way that better fits what is presumed to be the public interest by extracting generalisable information. In preferring generalisable facts over the subjective experiences narrated by patients, the activists’ popular epidemiology resembles the epidemiological studies performed by occupational health experts at the government’s request. Thereby, given the activists’ translation process, this article has argued, patients and their concerns have been.
The depiction of lay people in this article is neither homogeneous nor harmonious. Patients with different diseases had different takes on the issues of asbestos risk and its management. More importantly, lay people are described in this article not as an isolated group but as individuals interacting with others. The influence of the activists is especially distinguished in shaping agendas that are represented as showcasing patients’ concerns. To pay attention to the discrepancies rather than the agreements within the ban-asbestos activism group in South Korea is to highlight the diversity and power relationship, two important aspects of lay people that are too often dismissed in studies of risk, health and activism. It is also to find values and meanings in understanding lay people in the face of scientisation of public policy making and expertisation of the social activism. Understanding diversity and incongruence that reside within the group lay people leads us to see a more unvarnished picture of who lay people are and what their concerns are about living in this risk society.
Regardless of the shortcomings, however, it should be emphasised that ban-asbestos activism in South Korea has significantly contributed to the empowerment of the patients. What this article suggests is that there is an overall lack of ‘articulating spaces’ where talks on asbestos risks can occur in the risk governance environment in South Korea. Based on such concerns, this article has suggested incorporating bodies of patients—bodies that become sensible of asbestos risks and its damages, by interacting with diseases, medicine and compensation policies everyday—in asbestos risk governance and has urged the government, policy makers and activists as well. The patients I interviewed had different diseases and, thus, different needs, but they all asked for a better understanding of what it is like for them to live as a patient. Managing asbestos risk and its damages in South Korea, which resides in the realms of both environmental policy and health and welfare policy in a broader sense, by using bodies as valuable evidence is to give patients their righteous place in risk governance.