Against medicine: Constructing a queer-feminist community health informatics and librarianship

In Brief

Community health informatics (CHI) is rapidly developing as a field of library practice but remains constrained by unexamined definitions of “community”, “health”, and “informatics” as separate and unified terms. This is further complicated by a failure to situate libraries within a history of institutional oppression which continues to work itself out in the present. As a result, CHI practices within libraries often perpetuate and reinforce adverse power structures. The following paper seeks to liberate library CHI from its current constraints by deconstructing entrenched understandings of library community health informatics and re-envisioning them through a queer-feminist framework. The newly defined framework invites librarians to consider their own positionality, reorienting themselves and their institutions into sources of collective empowerment. A queer-feminist library CHI necessitates an anti-neutral, care-minded approach to health information delivery for structurally disadvantaged communities.The author envisions what that might look like from the perspectives of gender diverse persons like herself.

By catherine lockmiller

Introduction

How best to conceptualize the library that is doing community health informatics (CHI)? For that matter, how best to conceptualize what it even looks like, doing community health informatics? i ask because it could appear to mean doing everything, which as a result might also mean doing very little. Consider each of these words (“community” or “health” or “informatics”), and ask what it means to do a single one of them. What, then, to do all three of them together?  Considering the scale of the task, it is worth examining what it means for libraries to be involved in CHI and the responsibility of positioning libraries at the intersection of these three phenomena, each of which is an immense, human-technological practice in its own right. In this paper, i explore the term CHI and how it is involved in librarianship. Being inextricably attached to this subject, i will also focus on my positionality as a transgender woman, a community organizer, and a health sciences librarian. In doing so, i conceptualize a way of doing library CHI, both for myself and for librarians at large.

Coming toward a definition of community health informatics for librarians requires a deconstruction of the troika holding the term together while positioning libraries as central, operational figures at the core of CHI. In the spirit of unfolding from the center (where i am positioned, both as a librarian, and as the queer product of a medical-industrial complex bent on dividing me from myself), i will begin with an analysis of the terms “community,” “health,” and “informatics.” Afterwards, i will weave together the way that community health informatics has happened within American libraries. From there, i will construct a vision of library community health informatics as a practice of care.

Background

Community.

There is no escaping the need to make community, the need to organize. Which, in turn, establishes community-making as a political act. To paraphrase Slavoj Žižek, community is a series of “inner antagonisms” functioning in relation to an expansive field of universalizing/globalizing forces (2018, p. 61). In Žižek’s analysis, communities are modes of survival “whose task is to obfuscate an underlying antagonism,” which is inscribed into them by a power structure (or, more precisely, a complex system of power structures) (2018, p. 61). What results is a political effort defined by boundaries that are porous and ill-defined, unruly, and easily shattered.

Žižek’s antagonistic community hurtles headfirst into the all-consuming neoliberal blob and fixes itself in opposition to it. In this way, it acts as a protective layer and a navigational force. However, because the blob will inevitably reassert itself, antagonist communities seeking liberation cannot exist in isolation. bell hooks makes a similar argument in her intersectional analysis of educational communities. In Teaching Community: A Pedagogy of Hope, hooks describes the joining together of Black Studies and Women’s/Gender Studies in higher education and academic discourse. She makes clear that Women’s Studies programs have often ignored Black feminism, and in doing so, perpetuated the white supremacist discourse that continues to assert itself in academia. However, through the efforts of feminists who are critically conscious of their shared goals, projects, and vulnerabilities as opponents of a conservative mainstream, Women’s & Gender Studies programs have become antagonistic, shared spaces for a more inclusive and thoughtful intersectional feminism (hooks 2003).

i have provided only an introductory insight into community-making as an oppositional and political act. It is a subject that demands a much deeper analysis; however, it is enough to help us understand what CHI can look like: as an act of intersectional resistance.

Health.

Health is not just a product. It is a currency. Health operates as a vast system of material forces that contain the body, lodge themselves within it, compel it to change. To be totally absent of health is to bankrupt the body, to reduce it to rubble. Like power and privilege, health is a “positional good” that distributes, flows, empties, and ultimately is valued by who has it, who has lost it, and who goes without it (Biss, 2014). To be healthy is a state of being, and so too, to be unhealthy. Yes, “healthy” and “unhealthy” are spectral and shift erratically, but often, we construe them as solidly binary. Arriving at these states, our bodies warp and become denizen to new worlds, which are inevitably inhabited by others like ourselves. To paraphrase Eula Biss, “immunity is a public space,” and it exists alongside the public spaces of injury and illness (2014).

To arrive at health states, therefore, is to arrive at community, an argument that Rebecca Solnit makes in her treatise on crisis, A Paradise Built in Hell: The Extraordinary Communities That Arise in Disaster. According to Solnit, we concern ourselves with health as another factor in sustaining the myth of individualism, but in crisis we are propelled to a state where our bodies come together and where health and wellbeing mutate and become reconceptualized by the shock of a new reality (2010). Community-making through crisis does not make disaster a “good” thing, but it does suggest that the fear of being exiled from what Biss calls the “kingdom of the well” does not have to end in isolation or even devastation (2014). Rather, arriving at ill luck means arriving in a community space where health-currency is reoriented, shared, and leveraged for liberation, emergence, and solidarity.

From my own position as a transgender woman, i can attest to the community-making potential of a crisis. Gender diverse people in the United States experience a ream of health disparities that arise from a medical-industrial complex which arranges itself around binary, heteronormative conceptualizations of gender. We are at near-universal risk of experiencing social exclusion, marginalization, physical violence, sexual violence, chronic illness, and mental illness, among other disparities (James, et al., 2016; Zeeman, et al., 2017). Studies consistently show that 35 – 48% of transgender young people attempt suicide at least once (Zeeman, et al., 2017). It cannot be stressed enough that this is an exceedingly high number in a country where suicide is already a leading cause of death (Drapeau & McIntosh, 2017). Studies show that feelings of isolation, internal shame, and fear of being outed contribute to suicidal behavior among transgender youth, but at the same time, community-making has been shown to promote resilience and emotional well-being (Zeeman, et al., 2017). Consider the following exchange from Zeeman, et al.’s 2017 study on resilience among transgender young people:

The participants in this study are restoring their agency within the medical-industrial complex. They are concerning themselves with new approximations of well-being, distributing health across each other’s bodies, and enacting collective solidarity.

Community-making in crisis has the potential to generate new health currencies, but without external influences, those health currencies are caught in a closed system. A community that operates in this way cannot move beyond crisis because it is not able to affect the systems that enact the crisis. Rather, for a community to become healthy, there must be an assertion of inner antagonism powerful enough to penetrate and reorient the surrounding structures. In a sense, the affective, antagonistic community must learn to speak back at power. This is possible through informatics, but only when we recalibrate informatics as a mode of opposition.

Informatics

The Institute of Medicine (IOM) has defined informatics as “a field of study concerned with the effective use of information to answer scientific questions” (2013). This definition provides little insight into the term, since all scientific questions are answered using information. However, if we focus on the words effective and use, we can determine that a corporate definition of informatics is concerned with efficiency and totality. This is because the goal, clearly stated, is an answer, and not just an answer, but answers that compile one on top of the other such that answers happen more rapidly and on an increasingly large scale.

A more succinct definition for informatics proposed in 2010 suggests that the goal is not simply to answer questions, but to take data (i.e., symbols) and contextualize it by producing meaning out of it (Bernstam, Smith, & Johnson, 2010). Meaning, like data, is a human artifact, which involves an intentional reinvention of the world, one that seeks to make sense of it, and in doing so, shapes reality around it (Zlatev, 2018).

Queering informatics

Splicing together data and meaning is nothing new. Information systems involve a mediation of reality and are deeply co-creative (Botin, Bertelsen, & Nøhr, 2015). The newness lies in the rapidity of the splicing, the goals we have, and the end result of those goals. Returning to the IOM report, in the biomedical domain, totality (the answer) is an inherently neoliberal experiment. It is the unhinging of the individual body from the world and reproducing it as information, which then gets chunked with other information, and so on until all bodies are processed, stored, and retrievable.

It is this practice of universalizing knowledge that i resist. Following from Foucault, universal, expansive growth of biomedical technologies cannot be disentangled from corporate power structures. Left unchecked, the result is a “deeply rooted convergence between the requirements of political ideology and those of medical technology” (Foucault, 1975). Informatics as a totality rooted in efficiency produces meaning that retrenches the body, turning it into data for the purpose of making more data. This recalls Foucault’s other concept of the docile body, that which is coerced, transformed, and made valuable to the systems of power which influence it. The creation of the docile body is a technological feat, resulting in “the celebrated automata” that reinforce the will of the state (Foucault, 1995).

Foucault’s dialectic is one where agency is always already taken, where all bodies are subservient. As such, a Foucauldian perspective allows little room for resistance and arguably presents informatics and library praxis as an exercise in corporate fatalism. In contrast to Foucault, i contend that an ethical healthcare-oriented informatics and librarianship is possible; however, it must be undertaken with extreme care. For me, that means resisting the all-consuming, globular information framework that expands the neoliberal blob across the medical-industrial complex. The universal carries with it an abstractness that ignores the complexity, dynamism, and unknowability of bodies (Eubanks, 2018). It constricts the agency of the individual body and reduces it to the clinical gaze of the professional or the scientist (Botin et al., 2015).

Caring informatics

Especially in health-facing domains, a careful informatics is necessary. It is one which makes room for antagonistic community-making while also opposing singular definitions of health. It orients information technologies toward individual bodies. It is liberating, and produces agency. Finally, it surrenders its own agency to individuals working within their own communities such that they are in a position to participate and negotiate their health alongside the professional (Botin et al., 2015). To do this, i suggest an informatics that is both queer and feminist in its approach: queer by virtue of its resistance to uniformity and knowability, and feminist because it is deeply rooted in an ethics of care and autonomy.

While Foucault offers a path to queer resistance, a feminist community health informatics is enabling, capacity building, and participatory (Peddle, Powell, & Shade, 2008). Beyond that, it also recognizes that feminized disciplines which practice CHI are consistently undervalued (Peddle et al., 2008). Nursing and librarianship, in particular, are construed as pink collar occupations, with practitioners receiving lower pay, less opportunity, and minimal decision-making capacity (Monteiro, 2016; Sloniowski, 2016). Part of a resistant CHI means collecting power such that the emotional labor of nurses and librarians is not only compensated, but recognized as an integral, visible component of CHI practice.

An ethical CHI involves emotional laborers who are placed in key positions. These laborers function as capacity builders who focus-on and work-with communities targeted by systemic oppression. In doing so, we can enact digital pedagogies, critical community health practices, and homebrew technologies driven by the specific needs of the communities where we work.

As an example, consider a 2017 study which focused on building health literacy among parents of children with complex medical needs. The study is constrained to small communities, focuses on invisible caregivers (parents), and perceives health literacy as a mode of agency sharing between individuals and professionals (Armstrong-Heimsoth et al., 2017). Importantly, this particular study is not designed to meet the standards of big data collection. Rather, it takes health concerns for localized populations and recognizes them as currencies which function within the bounds of that same population. Again, this adherence to local spheres and antagonistic community-making is a key component to a careful CHI. Indeed, within librarianship, there are clear, detrimental effects to a global-scale CHI. In the next section, i describe a short history of librarianship, and how a focus on globalizing, neoliberal applications of CHI harms the health of disadvantaged persons rather than serving them.

Application to library praxis

Libraries are increasingly positioned as spaces where community health happens (Morgan, et al., 2016; Whiteman, et al., 2018; Whitney, et al., 2017). However, the scope of what libraries can achieve in community health is less easily defined (again, this is partially due to the slippery quality of the term “community health,” as described above). From the most basic perspective, wherein CHI is purely about the dissemination of medical information, America’s libraries have stored and circulated medical texts according to public need (Connor, 2000). Of course, “public need” historically has been defined by librarians and projected outwards into a proximal space where an ideal community was imagined to be. This in turn has situated libraries as sources of power that determine how and where knowledge is to occur. It has also meant librarians grossly misidentifying the communities within their spheres of influence, effectively ignoring the populations most likely to use their services. Even when library services were made available, public librarians of the late 19th and early 20th centuries were often concerned with leveraging health information for “improving the personal habits” of a cultural other, namely immigrants, persons of color, women, children, and the working class. The inevitable result was the propagation of cisheteronormative, white, middle class values (Connor, 2000). These examples reveal several operational truths in the early history of America’s libraries: information is power and must therefore be closely guarded. What is “the public” gets defined by hegemonic structures, with the power to make a “public” visible or invisible as suits the structure itself. And finally, what the “public” that gets defined “needs” is not medical information; rather, the public needs to be medically informed by the appropriate authority (almost certainly a white, wealthy man, almost certainly a medical doctor), again defined within the context of existing power structures.

Historically, such constructions of power have not been relegated to public libraries, and in fact, public libraries were just as likely to be exempt from obtaining medical information as the populations they served. This is made clear in the early history of the Medical Library Association (MLA), which was organized to promote the free exchange of health science publications across the U.S. (Connor 2000, 2011). However, for nearly a half century, the MLA refused to allow public libraries (and medical libraries associated with HBCUs) to join as member institutions (Connor 2011). As with public libraries, this was not solely a matter of cost; rather, it was about the influence of a burgeoning medical complex which sought to contain “power over people’s bodies, their health, and their life and death” (Foucault 1982). In doing so, community health informatics was defined early in the history of library practice as that which happens to communities and happens for the sake of solidifying the authority of the medical professions (and by lesser extent, the library profession).

i do not want to give the impression that libraries have always acted as purely oppositional institutions. This would miss the point (or rather, points) from which power moves across/through systems. To paraphrase Foucault, power is a practice, which is often esoteric and governed from a host of inputs and outputs (1982). There is no one place from which power flows. Additionally, power is not a constant. It can be realized, and it can be dissipated. And so there is power in being in a situation where power happens, where it appears. Libraries, as situations where information comes/goes, have always had this potential, as have the subjects within them. In some instances, that potential has been realized. Take the example of the Cleveland Public Library, which in a display of localized, caring, participatory activism held a community health campaign in 1912 that was designed to build awareness of tuberculosis not only through information sharing, but also through community events including vaccination, child care services, and a pop-up dental clinic (Wiegand, 2015).

Throughout the 20th century, there have been CHI library practices in the vein of the Cleveland Public Library. For instance, Chicago Public Library’s Douglass Branch made a strong push in 1970 to create a healthy community space for children and young adults which included the organization of a pop-up mental health clinic (Wiegand, 2015). This was part of a multi-pronged process of building an intentional community for children in surrounding neighborhoods, most of whom lived in low-income, African American households (Wiegand, 2015).

Both the stories of Cleveland Public and Chicago Douglass provide insight into the kind of community health informatics that i am seeking. This is a CHI that recognizes the particular positionality of libraries as conduits within a greater information ecosystem. America’s librarians have historically understood this to be the case; however, it is rare to find a library that asserts itself in opposition to the power structures that prevent underserved populations from forming communities. That said, when libraries push back, they are committing to only part of the battle. The critically conscious library system must also build discourses within communities that bring about a willful resistance to what Foucault brands le régime du savoir, “the regime of knowledge” (1982). In doing so, libraries construct a community capacity to reorganize and reinstitute the flow of power. The next section of this paper examines how that might look by focusing on the critical construction of a library CHI for gender diverse communities.

Application

We can now conceptualize a library-driven CHI that is involved with antagonistic, intersectional community-making, solidarity in healthcare, and resistant, localized informatics—all of which come together to form a queer-feminist community health informatics that derives power through libraries as conduits. Taken together, this provides us with a way of doing librarianship with underserved communities in mind. Let us consider gender diverse populations as an example.

As a transgender woman working with gender diverse populations, i have seen firsthand how a poorly implemented electronic health record (EHR) can harm an entire group of people. That EHRs have resulted in widespread transgender health disparities is not new knowledge. It has received attention everywhere from the U.S. Health and Human Services Office of IT Health to studies on surgical research, pathology, pediatrics, sexual health, and primary care (Deutsch & Buchholz, 2015; Edmiston et al., 2016; Imborek et al., 2017). All of this attention derives from the way EHRs have historically contextualized sex and gender such that both are exclusively binary interchangeable terms which only allow patients to be identified as male or female. In allowing for an informatics where the human body is forced into one of two possible categories, we construct a reality where transgender patients are 1) considered mentally unfit to understand themselves, 2) forced to perform in opposition to their own bodies, and 3) rendered invisible and therefore nonexistent.

Herein is an example for how a CHI that overvalues efficiency and largeness can damage an entire community such that 23% refuse to seek medical care due to fear of being dehumanized (James et al., 2016). Even now, when companies are finally beginning to take notice, gender-diverse patients remain wary and unlikely to disclose necessary health information (Thompson, 2016).

i am not suggesting that widely adopted EHRs should ignore gender-diverse identities; rather, i suggest that we subvert the primacy of technology-first methodologies which may allow implicit, cultural biases to encroach upon precision medicine and clinical decision making (machine learning is another example) (Caliskan, Bryson, & Narayanan, 2017; Eubanks, 2018). In doing so, we should reorient our focus back to material bodies participating in clinical space and recognize the shared corporeality, fluidity, and vulnerabilities those bodies present, especially when they are in opposition to externally constructed definitions of healthiness (Aranda, 2017). For me, this means 1) recognizing and affirming the political status of gender diverse communities, 2) practicing solidarity within those communities, as a gender diverse person or as an ally, 3) recognizing and reorienting privilege to reinterpret what it means to be healthy from the position of individuals within a gender diverse community, and 4) proliferating power through shared information exchange.

These goals are foundational to a queer-feminist library practice focused on transgender healthcare. Working them out will involve a concerned and “adaptive tinkering of the material, emotional and relational” worlds of transgender people in the United States (Aranda, 2017, p. 127). A possible area for concern is critical health literacy, a subcategory of health literacy, where the individual person is empowered to make systemic changes that radically affect the health of their larger community (Nutbeam, 2008). Critical health literacy provides a way of making CHI into a political force, one that truly recognizes the antagonistic nature of a resilient community as well as that community’s capacity to contextualize health for itself. When librarians adopt critical health literacy as a CHI practice, we can begin to imagine a library CHI that does not define health for our “public.” As a result, we open ourselves to an inter-affective antagonism that pushes back against globalizing power structures. This is true when working with gender diverse communities to build more inclusive EHRs. It is also true when considering library information space and how it can be used to produce solidarity and community action. Because of the spatial-structural positioning of transgender people in the United States, this is best achieved through an online or digital librarianship.

Due to low population size, lack of widespread density, and persistent transphobia,, transgender persons have a history of seeking community and information online (Karami, Webb, & Kitzie, 2018; Pohjanen & Kortelainen, 2016; Vargas et al., 2017). In a population where homelessness is a rampant social determinant, the internet becomes an online space where home is unbounded and bodies are fluid (Erickson-Schroth, 2014; James et al., 2016). Transgender people give us insight into that digital materiality, and recognizing it is key to a librarianship that empowers gender-diverse communities. Likewise, online information platforms should affirm trans narratives by allowing people direct communication with one another from a position of anonymity. Because librarians and health professionals will be actively embedded in the platform, they will be able to provide insight into health information needs; however, professional status will not signal ultimate authority. Rather, the goal is equitable information exchange. Moreover, because online cyberbullying tactics have directly targeted transgender people in the past, an interactive online library space should be constructed from an information-neutral perspective (Evans et al., 2017; Fox & Ralston, 2016). In doing so, it will be made clear that librarians are working with their communities and laboring to dismantle systemic oppression of transgender people.

When librarians adopt a queer-feminist practice in this vein, they actively strive to construct safe spaces that reduce harm done by a healthcare system designed to perpetuate bodily stereotypes and attitudes, both to transgender populations and the wider population of all persons who inhabit gendered bodies. It’s here that we can begin to realize a community health informatics and librarianship that is rooted in queer resistance and feminist care.

Conclusion

Let us return to the original question. How best to conceptualize the library that is doing community health informatics (CHI)? The answer depends on how we understand CHI. If CHI is a totalizing and neoliberal force, then libraries that do CHI are doing a great deal to perpetuate systems of oppression, while doing very little to support communities of the oppressed. On the other hand, a library involved in a careful, resistant CHI is positioning itself as an antagonist to the hegemonic power structures which harm disadvantaged populations. The library that adopts a queer-feminist CHI also recognizes that it does not determine its public. The library is not even central to the health and well-being of its publics. Communities are sources of survival that define and spread health internally and of their own volition. In response, libraries act as conduits for information flow and barriers against adversity. Libraries do not solve the process of making healthy communities, but they do at times participate in it. This could mean doing very small things. Care often does.

Acknowledgements

The author extends her gratitude to her reviewer, Dr. Vanessa Kitzie, for her keen attention to detail, and her kind (and constructive!) critiques. The author also wishes to thank The Lead Pipe team who assisted throughout this process: Amy Koester, Ryan Randall, and Annie Pho.

References