Liu Shao-hua, "Disease Names and Stigma"

Liu Shao-hua, “Disease Names and Stigma in the Context of the Pandemic”[1]
Introduction and Translation by David Ownby
 
Introduction
 
Liu Shao-hua is a Research Fellow at the Institute of Ethnology at Academia Sinica in Taiwan.  A Columbia University Ph.D., Liu’s research “uses AIDS, drug use, leprosy, or environment issues as the vantage point to analyze the nature and trajectories of contemporary social change in China and Taiwan, as well as individuals’ life experiences and transformations within social change.”  Her CV is available here, and an English-language interview with here on the on-line journal Made in China is available here.  Her prize-winning books include:  Passage to Manhood: Youth Migration, Heroin, and AIDS in Southwest China (English-language version 2011, later published in Chinese), 麻风医生与巨变中国：后帝国实验下的疾病隐喻与防疫历史 [Leprosy Doctors in China’s Post-Imperial Experimentation: Metaphors of a Disease and Its Control] (2018), and 人类学活在我的眼睛与血管里: 从柬埔寨到中国, 从这里到那里, 一位人类学者的生命移动纪事  [The Anthropology Living in My Eyes and Blood] (2019).

The brief text translated here is a thoughtful reminder of the importance of exercising proper care in the choice of the name we assign to a disease.  Liu’s concerns are chiefly ethical and moral, part of a broader project of putting an end to stigmatization and discrimination in all forms, and she rightly points us to the history of the names given to AIDS in Taiwan as a pertinent example.  It hardly seems necessary to note the political stigma—which of course can encourage racist reactions—attached to COVID-19 by certain states and non-state actors outside of China (including Taiwan) who insist on referring to it as the “China virus” or the “Wuhan virus.”  Liu acknowledges that such terms seemed “natural” at the outset, but argues convincingly that once better, more neutral, alternatives are available, they should be employed instead. 

Thanks to Dayton Lekner for pointing me toward Liu’s essay.
 
Translation

The recent coronavirus pandemic has given the world a great deal to talk about.  But in Chinese-speaking areas like Taiwan, Hong Kong, and China, even what to call the virus has become a topic of discussion.  Given China’s threats to and harm of Taiwan and Hong Kong, and the world’s anger at China’s management of the virus, discussing what to call a new virus from China has become more complicated and quarrelsome than ever.

Despite this, I would like to return to the basic topic of disease and stigma, and suggest that if the name comes with hints of stigma, we should think about changing it.

Naming the Coronavirus:  A History of Twists and Turns

In a very short period of time, the frightening coronavirus has already been called different things by different people.  Up to the end of December 2019, when at least nine cases of unknown pneumonia infection had appeared in local hospitals in Wuhan, no one knew what the disease was, and the first genetic sequencing tests only identified it as a coronavirus that produced a kind of "severe acute respiratory syndrome" (in Taiwan, this is called SARS or 煞 [evil spirit]; in China it is called “atypical pneumonia 非典型肺炎” or “atypical 非典” in its abbreviated form).

At the beginning, media outlets and governments in China referred to the new disease as the “unknown Wuhan pneumonia 武漢不明肺炎” or the “Wuhan viral pneumonia 武漢病毒性肺炎,” and in Taiwan it was called the “Wuhan pneumonia 武漢肺炎.”  In English, most international organizations used “pneumonia caused by an unknown virus in Wuhan, or “new coronavirus in Wuhan (or China),” to describe it, and most media probably simply called it the Wuhan virus or the China virus.  In Japan, where they often use Chinese characters, neither official publications nor the media used the term “Wuhan pneumonia,” according to a friend of mine who is a Japanese scholar, but instead, displaying the Japanese talent for adapting foreign terms, called it the “new coronavirus contagious disease 新型コロナウイルス感染症,” “coronavirus” being spelled out in katakana, the syllabary used for foreign loan words, occasionally shortened to the “new pneumonia 新型肺炎.”   

On January 7, Chinese officials formally announced that the pathogen of what they had called the “Wuhan viral pneumonia” was the “new coronavirus,” and the World Health Organization subsequently named it the “novel coronavirus 2019,” abbreviated as 2019-n CoV.  On January 11, the Wuhan public health committee also for the first time changed the name of the “viral pneumonia of unknown origin 不明原因的病毒性肺炎” to “new coronavirus contagious pneumonia 新型冠狀病毒感染的肺炎.”  This was not the formal name of the disease in either English or Chinese, but instead a common way of referring to it.

On February 11, the WHO formally named the disease COVID-19, which meant that it finally had a formal name in English.  But in Taiwan and China, the formal Chinese name remained the “new coronavirus pneumonia 新型冠狀病毒肺炎,” often shortened to “new corona pneumonia 新冠肺炎,” or if they used COVID-19 they would add, in parentheses, “Wuhan pneumonia 武漢肺炎.”

If We Choose Names Only for Convenience, Ignoring Stereotypes and Prejudices, We Risk Stigmatization

Once we start to use a certain name for a disease, it is extremely difficult to change.  This has happened over and over in history, especially in periods when empathy for others and awareness of human rights were not priorities.  We have all heard of  “Hong Kong feet 香港腳 [athlete’s foot],” “Japanese encephalitis 日本腦炎,” and the “Spanish flu,” names which are the products of such eras.  Even if medical specialists or those working in the history of medicine modified the names, they proved hard to change in popular use, and luckily with the passage of time the names no longer carry any stigma.  In 2015, in response to the constant emergence of new diseases, the WHO specifically called on scientists, governments, and media around the world to avoid unnecessary negative impacts on countries, economies, and populations when naming these new diseases.

Obviously, at the outset of the current outbreak, official sources in China and elsewhere paid no attention to the lessons of history and ignored the WHO’s reminders about naming the disease and from the beginning called it the “Wuhan virual pneumonia” or the “Wuhan unknown pneumonia,” a technically easy way to refer to what was happening, and which readily became, in popular use, the simple name “Wuhan pneumonia.”

Of course, a name created out of technical convenience, may later become even more common because of various social and international factors, in the process mixing with prejudices and stereotypes, and perhaps becoming a metaphor.

Although the WHO and Chinese government and media early on said that neither “Wuhan” nor “Chinese” should be part of the virus name, the Wuhan virus and the Chinese virus are nonetheless widely used outside of China.  Sometimes this is done on purpose by people attempting to attach a stigma.  My Japanese friend mentioned that some Japanese who are anti-China make it a point to say the “Wuhan virus.”  This happens in Taiwan as well. 

I have a Chinese friend who has lived for a long time in Hong Kong, who recently went with her child to Israel for an extended stay as a visiting scholar.  They carried out their two-week quarantine as required, but a week later were asked to take yet another blood test, and while all their tests were fine, even after a month the principal would not let the child enter school, solely because he is “Chinese.”  Judy Tseng 曾婷瑄, who writes for Commonwealth magazine 天下獨立評論, was interviewing people on the street in France, and noted that “virus chinois” was used by racists to slander all Asian people, who were told to “take the coronavirus and go back where you came from.”

As the virus has spread, “China” has become a metaphor for the virus.  Stigmatizing metaphors are in and of themselves contagious:  Wuhan has become China, and China has become Asia.  Who is finally safe if the stigma is allowed to spread at will?

Since Commonly Accepted Names are Hard to Change, We Should Be Careful when We Choose One

There are many reasons people are attached to names:  it can have to do with habits, with memory, with lack of attention, or with stigmatizing others.  The first three of these are part of “following the crowd,” and saying what you hear, so if society changes, this might change, too.  Of course, not everything follows the mainstream, but these are the exceptions to the rule.

But “stigmatizing others” is a behavior that is often most resistant to change, and it is also the attitude that those opposed to stimatization are most concerned with, as well as the one that policy-makers attempting to avoid stigmatization give the most weight to.  I will use the example of AIDS to address the importance of changing this type of behavior.

When AIDS first appeared in the 1980s, it was like today’s virus in that it left people anxious and afraid.  At the time, the earliest identified cases appeared in the United States among male homosexuals, and from the beginning, people had a stereotyped view of the disease as being part of the world of gay men.  In fact, cases of infection were quickly found among drug addicts and hemophiliacs using blood treatment products, and later on, the number of heterosexual infections in the world actually greatly exceeded those of homosexuals.  Yet the early stereotype continued to dominate people’s understanding.  Even today, AIDS is still seen as a disease linked to male homosexuals, who are often suspected to  be at the origin of the disease because of this stereotype.

The Chinese name for AIDS changed because of this stereotype.  In 1982, the new disease was called Acquired Immunodeficiency Syndrome, abbreviated as AIDS in English.  Because the disease had been linked to the stereotype of male homosexuals from the beginning, Taiwan media at the outset translated it as “the disease of those who want to die 愛死病 [pronounced “aisi” illness],”  because at the time Taiwan practiced considerable discrimination and exclusion of male homosexuals.  This expression did not last too long and was changed to “the disease of those who nourish 愛滋病 [pronounced “aizi” illness],” in response to the criticism that the original name was stigmatizing.  This change and the thinking behind it set in motion a great improvement in terms of law and medical policy, even if the prejudice against those who suffer from AIDS on Taiwan has not completely disappeared.  Mainstream society remains somewhat prejudiced against gays, but in terms of law and equal rights, gay marriage has now been accepted.

Changing a name has symbolic significance, signaling a society’s desire to fight against stigmatizing prejudices.  But if these changes stop at the level of the symbolism associated with the name it will be impossible to get rid of stigmatization and discrimination.  To achieve this depends on whether government policy and social forces actively support this goal. 

Clearly, both “Wuhan pneumonia” and “Chinese pneumonia” have become negative stigmas, whether that was the original intention or not.  Given this, if we continue to ignore the name, or argue that it is not important, this suggests a lack of sensitivity to stigmatization and discrimination, a negative standpoint on the question of investing the time and effort to change people’s prejudicial views.  If we are not willing to take this relatively easy step, then how can we expect human society to change its insensitivity and even inertia to the labeling and stigmatization of others?

The mistake has already occurred, and understanding why that happened and correcting the negative effects it produced are two different undertakings.  We need not use adopt a black and white viewpoint, criticizing everyone who uses the term “Wuhan pneumonia” as if they are intending to discriminate and stigmatize; nor do we naively have to insist that the term is technical or convenient and thus neutral, and thus will not contribute to discrimination or stigmatization.  The damage has been done, but in order to avoid its possibly developping into a long-term self-regenerating negative metaphor, we should call on all relevant parties to change the name of the disease, without having to argue over whether the misunderstanding exists or not.  Change is a step-by-step process, but there always has to be a first step, and we should use our strength to produce a positive social change leading to greater sensitivity to stigmatization and discrimination.

In epidemics throughout history, all those infected have suffered, even the first person diagnosed with the disease.  But no one should have to bear the historical blame of being called “Typhoid Mary,” and the same goes for the people of a city or a country.

Notes

[1] 劉紹華, “肺炎疫情下談疾病的命名與汙,” https://opinion.cw.com.tw/blog/profile/406/article/9150 March 4, 2020.