Mini-Ethnography: Illness Narratives

 Illness Narratives: Epidemics, Pandemics and Plagues 

“Until the academic discourse of medicine is expanded beyond the languages of molecules and drugs to include the language of experience and meanings, however, medical science will reinforce the profession’s resistance to the problems of illness rather than contribute to the broadening of its vision. Research that avoids the human side of disorder places the profession and its practitioners in iron chains of restricted knowledge. So fettered, medicine and doctors are unable to address some of the most difficult yet essential questions in the care of the chronically ill; the physician is prevented from having a personal stake in the patient’s condition, and medicine from applying moral knowledge to suffering.”--Arthur Kleinman

Read HERE

"An ethnography is the telling of a people's story" (Translating Culture, 312).

For the next semester, we will engage in an ethnographic project that entails virtual (or actual) participant observation and auto-ethnography, two of the principle forms of qualitative research in anthropology.We will use these techniques to create Illness Narratives, which are important products of medical anthropology, as they strive to describe the "experience of illness" as a way to understand behaviors, practices and conceptions of illness in a culture. 

As anthropologists, our modus operandi is collecting narratives. We undertake field work, during which we often spend a year or more living in foreign communities, immersing ourselves in people’s daily lives. We ask men, women, and children about their families; their religion; their understanding of the cosmos; their politics; their roles and status within their societies; and their perspectives on the body, the self, sexuality, sex roles, aging, child rearing, work, diet, violence, the economy, and international affairs. We then publish our ethnographic accounts using narrative as an analytic tool to support our arguments and as a literary tool to enhance our writing.

 

Within the realm of medical anthropology, ethnographers turn their attention to the cultural construction of health and illness, biomedical and other models of healing, international health policy and health care systems, and the social determinants of health. To learn something about illness experience, anthropologists elicit narratives and then interpret them. The ethnographic endeavor has been described thus: “Our anthropological productions are our stories about their stories; we are interpreting the people as they are interpreting themselves.” (M. Divinsky)

 

Arthur Kleinman is a physician who became an anthropologist. Byron Good is an anthropologist who analyzed the medical profession. They and other scholars, such as Allan Young, Clifford Geertz, Susan Sontag, Victor Turner, Edward Bruner, James Clifford, Lawrence Kirmayer, George Marcus, and Terence Turner, shaped medical anthropology’s scholarship on illness narratives and the poetics and politics of writing about people’s experiences of health and illness.

 

Through his clinical work as a physician, Kleinman was aware of the significance of medical histories: “Since eighty percent of diagnoses in primary care result from the history alone, the anamnesis (the account the physician assembles from the patient’s history) is crucial. The tale of complaints becomes the text that is to be decoded by the practitioner cum diagnostician.” Kleinman’s anthropologic training then led him to recognize that illness narratives have to be contextualized: “Each patient brings to the practitioner a story. That story enmeshes the disease in a web of meanings that make sense only in the context of a particular life.” He also realized that there was value in recording and publishing these stories. As Kleinman recalls, “The Illness Narratives told stories of sickness much as they had been told to me. I felt a deep compulsion to retell these accounts.”

 

Medical anthropologists argue that illness narratives are not merely accounts of symptoms but:

• a mechanism through which people become aware of and make sense out of their experiences. 

A transformation takes place from something lived (full of complexity but not given a single, crystalized meaning) into something interpreted (given structure and meaning through the dialogue that takes place between the patient and physician). 

• “Narrativization” therefore acts as a reflexive, therapeutic, and even a transformative mechanism for people who have experienced illness. 

As Becker asserts, “Narratives, my own included, arise out of a desire to have life display coherence, integrity, fullness, and closure.” Moreover, when a person walks into a physician’s office, the physician becomes one of the players in the story. Good eloquently describes how our stories become intertwined: “The narrators—the person with an illness, family members participating in their care, medical professionals—are in the midst of the story they are telling.”

 

Learning to hear: How do we learn to hear?

 

Faculties of medicine have been brought to task for churning out physicians with poor interpersonal skills. Despite attempts to include physicians’ skills development in their curriculums, the focus of our training is on the science of medicine: anatomy, pathophysiology, pharmacology—but the skill of listening with sensitivity to people’s stories is not emphasized. They are evaluated on our ability to be methodical, not empathetic.

 

Students, like anthropologists, learn a lot through observation. Medical anthropologists think about the encounters with patients in the same way they think about my ethnographic encounters. 

 

Politics of stories

As anthropologists, we have to be cognizant, as we promote narrative medicine, of the politics of storytelling. 

• How those life stories are told, by whom, and the form that those stories take are fundamentally grounded in politics, history, and culture. “Narrative is always political,” medical anthropologists caution, “because people choose which narratives to tell.”

Therefore, narratives are expressive of cultural beliefs and the experiences that have both shaped and continue to inform their beliefs.

Consider for example these opposing views:

1. Vaccines will save us from this scourge-vs- Vaccines will make us guinea pigs for the powerful
2. Mask wearing is effective to prevent viral transmission-vs- mask wearing is ineffective, or may cause you to get ill
3. I trust doctors and modern medicine-vs- I don't trust doctors or modern medicine, and only use natural medicines
4. Pharmaceuticals are miraculous and give us relatively healthy lives-vs- Big phrama is the devil
5. Everyone is susceptible to disease-vs- only those whose lifestyle is unhealthy get diseases

These beliefs are formed through experiences and may be understood in the context of illness narratives collected by medical anthropologists (and YOU this semester).

Ethnographic Semester Assignment

4 Parts=Final Mini-Ethnography

Part 1: Auto-Ethnography

Part 2: Popular Conceptions of COVID-19, narratives from social media

Part 3: Stories from the Front Lines

Part 4: On the Future of Disease

Final Project Submission

You will be encouraged to share snippets of your experiential research over the course of the semester as you undertake this process. 

1. 

Finally: Write it up!

Ethnographic essays should be 10-15 pages, and may include photographs and other bits of illustrative material. Be creative. These will be presented to the class via POWER POINT or another digital presentation format of your choice that we can share on ZOOM.

1.    Remember that your essay should be evocative

OTHER STUFF:

·        Ethics. Consider your impact on the people and the community you are interviewing. Is the setting a public place which does not require you to inform people that they are being observed? (like social media, for example) If not, how might you inform people that they are part of a research project? Ethics REQUIRES that interviewees are given anonymity, and are protected from any adverse affects of your research. We will go over the requirements for transparency and protecting informants in the coming weeks. (if you are interested, there is a more detailed written treatment of ethics on this link)

·        Assumptions. Try not to prove pre-existing theories you have about the context and activities happening (and then see how hard this is!). 

·        Time. While I don't want to make static time requirements for this assignment, the concept of 'intense observation' should connote more than one or two hours of observation. Aim for about 16-20 hours of total interview time (virtual or actual, when this is possible).

·        Guidelines For 'Looking':
1. Observers try to uncover and record the unspoken common sense assumptions of the group 
                that they are studying. Therefore, some of these you will observe without them being 
                explained to you.
2. Draw & Take Photographs. Field notes should be more than writing; drawing maps and 
                sketching activities is often very useful when trying to remember the details of what 
                you have seen, take screenshots of media data, etc.  

      3. Reflect on your own actions. Ethnographers alter themselves in order to fit into 

    contexts as unobtrusive observers and as participant observers. How much

    do you have to adapt yourself in order to learn about the context and culture that 

    you are studying?
4. Language: Is there a special language/vocabulary that your informant(s) uses to describe 
               themselves or simply communicate personal beliefs or those of a group? (Consider      

    QANON, for example). Contrast this with symbols and vocabulary used by other 

    individuals or groups. What is the significance of these differences?