Thursday, October 22, 2015

Co-Creation, Consciousness, and Community

by Sasheenie Moodley 

Co-authorship and co-ownership are becoming more and more relevant in conversations surrounding sustainable involvement in developing areas. The idea of authoring or owning intellectual and experiential information with another individual can be described in a single term: co-creation. Co-creation is imperative, as more and more countries move toward globalization, in an effort to preserve the uniqueness of self-identities within a ‘community,’ as described by Nana Anyidoho in ‘Communities of Practice:’ prospects for theory and action in participatory development. Recognizing self-identity is particularly significant as identity pertains to the ideology of a ‘good life,’ and how we define ourselves, and our relationships in society. The idea of co-creating something, an idea, research or narrative, strives to ensure that both contributors assume roles in a
sharing process, evident in Richa Nagar’s Storytelling and Co-authorship in Feminist Alliance Work. While co-creation allows the original author to claim agency and participate in shaping a narrative that will be shared outside the author’s realm of consciousness, subaltern narratives are likely framed subjectively due to individual self-identities, and unique experiences. Therefore, we should read all narratives with awareness in order to disprove generalized misconceptions, and guard against subaltern’s subjective opinions.

Central to research, co-creation aims to restore (some) power to the original author of a narrative or experience. Co-creation attempts to correct the cycle that has existed for many generations: a researcher from the more-developed country 1) listens to someone’s narrative, 2) writes an article retelling the narrative that inevitably transfers ownership and/or power to the researcher, and 3) inherently detaches power from the original author of the narrative. Without co-creation researchers not only assume ownership subconsciously or consciously, but they also risk painting one group of people with the same brush: “the individual is not correctly perceived as a dynamic being with multiple and shifting self-identities and social positions over space and time…differences between
individuals within the assumed community are obscured” (Anyidoho 2010:5). Thus, co-creation allows individuals in the same “community” to showcase their self-identities, and unique personalities. Anyidoho emphasizes the reality that individuals in the same area do not necessarily share the same opinions, values, beliefs or aspirations. Individuals around the world are in fact “dynamic beings” who have certain social and cultural obligations in their respective networks. Through co-creation, individuals have a space in which their self-identities can be recognized, actualized, and respected.

As we realize that individuals in other parts of the world have autonomy and unique personalities, we must also question our preconceived notions, and misconceptions. Nagar emphasizes this in her account of two Indian sex workers, Roopa and Seema. While Roopa offers a “fake story” of “victimhood,” Seema shares her personal experiences, and how she embraced the “terms and conditions of her profession” as a sex worker (Nagar 2012:2). Herein lies the complexity of each narrative, as each woman presents her narrative laced with subjectivity, and self-identity. Additionally, we should consider how applicable each narrative is to the larger sex worker population. While Roopa’s “fake” narrative may be indicative of another women’s experiences in the sex worker industry, her violation of the truth deems her narrative untrustworthy. If other researchers relate to all individuals in the community based on this fact Roopa’s dishonesty could endanger the validity of similar narratives in the future. While Seema’s honest account of the challenges, and jubilations in her life may be indicative of Seema’s experiences, other women who are her colleagues may not share her opinions. Researchers who relate to all individuals in the community based on Seema’s narrative could perceive the sex worker population as content, and untroubled in their situations. In this way, we see that neither account can completely describe all women in the population. The fact that we often risk generalizing a small population based on lone narratives highlights our prejudice, and inherent bias. We need to have awareness of such misconceptions, and “interrogate (our) own assumptions about marginality, oppression, liberation, and charity” (Nagar 2012:2).

Self-identity, situational factors, and self-expression are no doubt exhibited within existing social realms long before researchers arrive on the scene. In this way, while co-creation may grow ownership and agency, there remains some uncertainty regarding the type of information gathered in a collaborative process, because of inevitable subjectivity expressed by subalterns. In other words, co-creation tackles the ‘how’ of research such as the methods and dynamics of research, but the ‘what’ remains unclear as it pertains to the kind of information presented by the subaltern due to his/her unique experiences or personality. The ‘what’ is influenced by the way subalterns perceive various situations, and how they interact with researchers outside their usual networks, as well as how they interact with individuals within their everyday communities. For example, when we talk to our peers and friends at UVA about our summers abroad, or our field experiences we consciously decide what kinds of information we wish to share based on how we perceive those peers and friends. We carefully craft the way we convey our narratives based on who we are talking to, and their past experiences. We “frame” our narratives hoping that the listener can empathize with, and understand our experiences the way we express them (Nagar 2012:4). Similarly, subalterns consciously craft the narratives they share with researchers, as evidenced by Seema and Roopa’s stories: “altogether, the two responses highlight the complexities of subaltern agency and the ways in which the formulations of radical desire might be unruly, ill-tempered, incomplete, conformist, and/or seemingly contradictory” (Nagar 2012:2). Nagar nicely describes the process of carefully crafting a narrative using “complexities of subalterns,” as she conveys that most individuals offer subjective narratives. It is an archaic assumption that individuals in an area or network all share a common narrative simply because they belong to the same geographic region, or “community” (Anyidoho 2010:5). Thus, individuals in one region offer the kinds of stories that are not homogenous or standardized, because the individuals in that single region are not homogenous or standardized.

In conclusion, Seema and Roopa highlight the important reality that original authors do not always offer true, or expected versions of narratives. In Nagar’s article, both women consciously shaped their personal narratives according to the message they aimed to convey. This message was crafted because of how each woman wanted Nagar to perceive her, and how each woman wanted Nagar to perceive the people in the community. Such preferences likely developed from each woman’s comfort level with Nagar, perception of Nagar’s work and purpose, the types of questions and prompt that Nagar offered, life experiences, and relationships with Nagar given the social context of the interactions.

Thus, there are many external factors that affect narratives, in addition to careful crafting by the original author. By introducing co-creation to correct basic power dynamics, we must realize that we are not ensuring fair narratives. There are many others factors as play in ethnographic research. In fact, reducing the effects of power in research has uncovered other controversial issues such as the idea of a ‘community’ and conflicting narratives within it, and transparency of the interviewer (researcher) and interviewee (subaltern). It is important to remember, therefore, that writing with a balanced perspective through co-creation alone is not enough to correctly construct research. Additionally we, as readers, must be conscious of who is being represented in the research that we read. The articles we read are narratives offered by a few individuals, and often do not represent the narrative of an entire ethnicity or nation. Ultimately, the responsibility is two-fold: authors must consciously co-create narratives with balanced perspectives and minimal subjectivity, and readers must consciously read narratives with awareness of self-identities to challenge misconceptions.

What’s in a Name? Disease Naming Guidelines set by W.H.O

The mission of many global health organizations is to promote health, cure diseases, build health system infrastructure, and implement pro-health equity policies. Recently, an article in the New York Times that caught my eye, “W.H.O Urges More Care in Naming Diseases.”  The World Health
Organization recently made an announcement that “disease names may not include geographic locations, people’s names, species of animal or food, references to culture, population, industry or occupation, and ‘terms that incite undue fear’”. Making changes and implementing policy on the process of disease naming may seem insignificant at first when compared to the necessity of medicine and healthcare poverty-stricken areas desperately need, however W.H.O offered substantial arguments for why the name of a disease can have harmful effects and should render greater significance.

Disease names that include place, name, or any other signifier previously mentioned, can have the harmful effects of stigmatizing not only a disease, but the geographic location, culture, population or industry itself. Furthermore, it can lead to false conceptions of a disease that could lead people to think they are not subject to contract a disease due to a name that may be geographically confining such as is with the case of Middle East respiratory syndrome (MERS), which originated in the Middle East but has spread around the world. WHO is not suggesting to change the names of known diseases, rather, it effectively set guidelines for naming diseases hereafter that will “help counter stigmatization and faulty assumptions made by the public and decision makers when addressing emerging infectious diseases” (Dr. Jewel Mullen, Public Health commissioner).

This notion of disease naming brings attention to the idea of health as a component of ‘being’. It’s not just about disease treating. The name of the disease and the standing associations bound to the disease among people and society effectively influences how one not only perceives, but experiences the disease.

Contributed by Sedona Hoppe-Brosse