Queering Health Information Seeking: a pre-comps independent study

IS-601, Simmons University, Summer 2020, Dr. Colin Rhinesmith

Research/er Statement

As a queer, non-binary individual who lives with comorbid mental illnesses, I am a sexual and gender minority (SGM) whose health information seeking behavior (HISB) has been limited by societal constraints on language, as well as stigma and discrimination (SAD) related to my identities and conditions. Fortunately, in recovery I have been included in groups, medical treatments, and therapies that are focused on the experiences of SGM people. This has led me to my understanding of my illnesses, as well as my gender identity and sexuality. It has also changed the focus of my doctoral studies in an effort to contribute to more equitable information access. 

While I consider myself an open book on a personal level, professionally I try to protect my privacy. It’s necessary, however, to establish my point of view in order to perform authentic research–especially since I will be utilizing an ethnographic approach to better understand a community that I belong to: the affectionately termed “gay AA.” SGM individuals experience large and persistent needs for mental healthcare, including high rates of substance abuse and addition, due in part to SAD. SAD impacts cognitive, affective, and behavioral processes, which can affect HISB. I plan on performing an ethnographic case study to explore the impact of SAD on HISB by adults age 18 years or older who identify as one or more SGM identities and as an alcoholic and/or addict. The study will provide in-depth understanding about the HISB of SGM individuals living with addiction. 

There is not a single addict out there who doesn’t want to get clean. It’s not a matter of willpower alone. Substances can be (or appear to be) cheaper and more accessible than behavioral healthcare, as well as more socially acceptable. In many communities, being queer is also not viewed as socially acceptable. Even if people praise rainbow capitalism, socioeconomic structures don’t protect or serve SGM people. If you scratch the surface of SGM addicts’ stories, you find the pain of being ostracized, alongside the fear of being outed not only for being queer, but for being “crazy.” This impacts every phase of recovery—and, I hypothesize, information seeking. 

Recovery requires acknowledging structural injustices and administering comprehensive, intersectional behavioral healthcare programs that are easy to locate and utilize—as well as developing communities where people feel supported not as addicts who need “saving,” but as people who are discovering meaning (Dave, 2020). But it’s not enough if we fail to recognize intersectional structural issues that prevent this recovery, such as that white people are more likely to receive improved treatments than Black people, because Black people are more likely to be sent to jail/prison for addiction-related behavior, while white people are sent to rehab (Alexander, 2020; Dave, 2020). Imprisonment is not an addiction treatment program. It is, at its core, yet another system of othering (Alexander, 2020). 

It is important to note that there are various terms I will use through my research that have multiple meanings, as well as to note that I will not be able to focus on all elements of my subjects’ identities. As much as possible, I will explore the intersections of other identities, such as race and socioeconomic status, and how they impact SGM individuals’ information seeking, but there will always be some aspects that are not discussed. I adopt an intersectional, queer theoretical approach that recognizes the multiplicity of individuals’ identities and the sociopolitical powers that impact them. Sex, sexuality, gender identity, mental illness, substance abuse, and addition are defined and exacerbated by societies, and it is therefore important to adopt an intersectional perspective when examining these issues, particularly in the way information related to these identities and conditions is structured and provided.

Findings and Discussion

This work is a beginning, an initial exploration into queer theory, a start to considering its applications to the study of health information seeking behaviors. It is not intended to be exhaustive, but rather to serve as the basis for formulating a methodology to guide my doctoral research. It briefly examines methodologies, theoretical frameworks, and methods informing this research. My goal is to apply queer theory as well as a disability lens to the methods of ethnographic research, and to queer and crip my research on health information seeking behaviors. 

Queer Theory: An Overview

In 1991, Teresa de Lauretis guest edited differences: A Journal of Feminist Cultural Studies, the first academic journal issue devoted to queer theory. In this publication, the question emerged: “How have sexualities been variously conceived and materialized in multiple cultural locations?” (Giffney, 2015; McRuer, 2006). Like the term “queer” itself, queer theory resists definition. That said, queer theory can be conceptualized as an approach to understanding human sexuality and gender “[…] particularly (but not exclusively) interested in forms of sexuality that fall outside of (or are defined in opposition to) the so-called heterosexual norm” (Buchanan, 2001). It is a “critique of identity” (Butler, 2008, qtd. Giffney, 2015) encompassing fluidity, history, power, and revolution. 

Though sex, sexuality, and gender are intertwined, they are distinct categorizations, and one identity does not determine the others. To most queer theorists, all three are created and understood in historical and social contexts and have been defined and assigned qualities in different ways throughout the ages and cultures. As Beasley (2005) explains: 

‘Gender’ typically refers to the social process of dividing up people and social practices along the lines of sexed identities. The gendering process frequently involves creating hierarchies between the divisions it enacts. One or more categories or sexed identity are privileged or devalued (p. 11). 

Sexuality is similarly divided and devalued; for example, in Western thought prior to the mid-to-late 19th century, homosexual acts were seen as separate from individual identity (Foucault, qtd. Sullivan, 2003). Female homosexuality was ignored until First Wave feminism (Faderman qtd. Jagose, 1996), in part because men were considered active sexual participants, while women were considered passive. In this view, while feminine and masculine identities were not fully dependent on genitalia, there was little recognition of masculine homosexual men or feminine lesbians, and there was no recognized gender beyond the male-female binary (Sullivan, 2003). For many Westerners, sexuality was (and is) considered private, which creates both individual and societal issues, including potential for domestic abuse (Machado, 2019). Gender is typically expressed (Pan and Moore, n.d.), often in external manner, such as fashion, though not all people are able to “pass” as their gender identity (Beasley, 2005).

Historically, sociopolitical arguments surrounding sex and gender issues tend to adopt an essentialist or constructionist view. Essentialism considers identity to be fixed (Jagose, 1996), whereas the constructionist view holds that sexuality is defined by culture and history rather than solely biological (Kang et al., 2017). To a constructionist, identity is fluid, not objective, and dependent on culture and relationships (Jagose, 1996). Essentialist and constructionist are not binary oppositions, and political arguments often use both (e.g., being “born this way” alongside personal realization of identity) (Jagose, 1996). 

Important thinkers in the constructionist view were Krafft-Ebing, Ellis, Westphal, and Hirschfeld. Krafft-Ebing viewed homosexuality as abhorrent and degenerative, while Ellis considered homosexuality an anomaly, not a disease, and a predisposition rather than determination. Westphal considered homosexuality a deviation from normal sexual development. Hirschfeld recognized an “infinite sexual variability,” but recommended “adjustment therapy” to reorient homosexuals as heterosexuals (Sullivan, 2003). The poststructuralist view holds that sexuality is ingrained in history, institutions, and culture, but asserted that there are no objective or universal truths. As Sullivan states: “[…] postructuralist theorists and queer theorists find identity politics inherently problematic” (41). For example, Foucault asserted there are degrees of difference in relation to norms; he termed these “normalizing discourses” (Foucault qtd. Sullivan, 2003, p. 40). Other important queer theorists who adopted a poststructuralist view are Butler, Lyotard, and Wittig.

Movements in the USA that have accepted a variety of structuralist and poststructuralist arguments have traditionally been aligned with assimilationist and liberationist ideologies. The assimilationists argued that homosexuality should be considered part of the mainstream. Early assimilationist groups included the Mattachine Society, founded in 1951, and the Daughters of Bilitis, founded in 1955. Librarians formed the first LGBT professional organization, ALA’s Task Force on Gay Liberation, in 1970; it is currently called the Rainbow Round Table (RRT). The assimilationist movement was, and arguably continues to be, mainly white and predominantly upper-class. As one can see from Pride parades funded in part by sponsorships from corporations including those in the banking and alcohol industries, the assimilationist movement has gained traction, partially for its marketability. 

The liberationist movement considers the established social order corrupt and measures the success of actions by how they disrupt/destroy the establishment. Thus, liberationist movements have focused most of their efforts on legal reforms, including recognition of SGM identities as protected minorities (Jagose, 1996); this is also evidenced in the term “sexual and gender minorities” that is growing in preference among researchers, myself included1. Liberationists value a celebration of queerness in the pillars of “[…] Pride, Choice, Coming Out, and Liberation” (Sullivan, 2003, p. 29), and consider sexuality a celebrated identity. Liberationist believe that there is a need to eradicate traditional norms of sexuality and gender. To the liberation movement, gender is a unifier for subgroups. The 1969 Stonewall Riots are generally seen as the starting point for the Liberationist movement. 

The Stonewall Riots also caused an academic response in the development of lesbian and gay studies, which birthed queer studies (Buchanan, 2001; Jagose, 1996). Sexuality studies focuses on sexual experiences and sexualities, with more scholarship about gay men than other groups (Beasley, 2005). Queer studies are currently loosely defined as “[t]he study of sexual identity and its related cultural history” (Buchanan, 2001), and are also criticized for being focused on gay men, cisgender individuals, and whites than other groups. Queer studies were initially considered a challenge to the academy, but along with lesbian and gay studies, quickly became incorporated into the curriculum (Buchanan, 2001). Relatedly, prior to the 1990s, trans and intersex studies and theories focused on two groups: people with sex/gender identities separate from those assigned to them at birth (e.g., transgender) and those with ambiguous birth sex (e.g., intersex). Gradually, these groupings overlapped, and current theories recognize that the issue is not with medical intervention as much as with general categorization: as sex, sexuality, and gender are distinct categories, sex change is not necessarily gender change (Beasley, 2005).

Queer theory is related to, and can be at odds with, postmodern feminism. In general, postmodern feminists are social constructionists. Notable postmodern feminists who are also queer theorists include Gloria Anzaldúa and Judith Butler. Postmodern feminism, coupled with queer theory, rejects gender divisions, and “does not simply challenge women’s current social status but their status as a group” (Beasley, 2005, p. 100). Foucault focused on inclusion/exclusion of groups: “[…] the fact that the elastic continuum of sexuality can be segmented so neatly despite the obvious permeability of the key categories” (Foucault qtd. Buchanan, 2001). Drawing from Foucault’s theories, Butler asserts that gender and its categories (e.g., “women”) are created within historical and social contexts. To postmodern feminists, gender is power—a performance of power, an effect of power—rather than an essential characteristic. 

Focusing on gender rather than women’s studies has been critiqued by other feminists for focusing away from women and women’s subordination. Likewise, many postmodern feminists critique prior feminist approaches about identity, particularly gender; as Butler writes, “the identity categories often presumed to be foundational in feminist politics…simultaneously work to limit and constrain in advance the very cultural possibilities that feminism is supposed to open up” (1997c: 126, qtd. Beasley, 2006, p. 102). Such feminists are frequently criticized for being trans-exclusionary; for example, J. K. Rowling has taken a public trans-exclusionary radical feminism (TERF) stance (Urquhart, 2020). 

To postmodern feminists, gender categories limit power and determine in-group/out-group status. This supports Foucault’s concept of remaking of the self: individual identity is reconstructed within societal norms. These ideas have implications beyond gender. If gender is not fixed, then all aspects of the identity and society can be questioned: 

Multiple Differences: […] the way in which marginalized and oppressed social groups are conceptualized as against dominant social groups […] focusing on plural identities as well as differences within different identity categories.

(Beasley, 2005, p. 250)

The question arises: if gender can exist in multiple ways, can ethnicity? Can socioeconomic status? However, this opens space for problematic approaches; both postmodern feminism and queer theory are criticized for being “white, Western and able to choose to travel” (Beasley, 2005, p. 170), with the majority of research performed on gay men’s experiences. Queer feminism is also critiqued for focusing on identity rather than social context, privileging those individuals who do not have to rely as much on group structural supports. There are social constraints that require people to belong if they cannot afford to be outwardly queer. 

Being queer itself is broader than being a category in or alongside LGBT. Similarly, queer theory has different aims than LGBT studies. By limiting queer only to an identity category, this limits its political potential. Rather, queer can be used as an identity while still being seen as a methodical approach: that of queering. To queer something means “to de-naturalize taken for granted categories of analysis, even beyond issues of sexuality and gender” (Fotopoulou, 2012, p. 25). 

Words and language are of particular importance in queer theory (Giffney, 2015). The use of the word “queer” is an example of politically reclaimed terminology, which also includes terms like “crip,” that have been historically used in a derogatory way and have now been reclaimed by the community they once derided (McRuer, 2006). Queer is a contentious, fluidly defined term that spans diverse approaches to sexuality, identity, ethics, and norms (Giffney, pp. 28-30). As a term, queer is not intended to be defined, and thus there is no single definition of it (Jagose, 1996; Sullivan, 2003). Queer is generally taken to mean something different, including “madness” (Sullivan, 2003, p. 43; see also Foucault, 2013). Queer is not homogenous (Cohen qtd. Sullivan, 2003), and while queer is useful as an umbrella term, particularly to explain queer issues to outsiders, it homogenizes (Anzaldúa, qtd. Sullivan, 2013).  

Queer theory focuses on identity, and considers identity as fluid, not fixed (Jagose, 1996), and is itself “[…] vague and indefinable […]” (Sullivan, 2003, p. 43). Queer theory does not see behavior and identity as synonymous; behavior is ubiquitous, while identity depends on culture (Jagose, 1996). It privileges “acts over identities” (Jagose, 1996, p. 20). According to Foucault, sexuality is constructionist; the term “homosexual” was not recognized until 1870, when it was used by Westphal. The medicalization of sexuality was the basis for initial recognition of homosexuality. Other early homosexual recognition was found in the molly houses of Great Britain, which were gathering places for homosexuals; here, a culture of homosexuality arose that formed around identity rather than proclivity (Jagose, 1996). Some theories argue that we need to be able to separate homosexual behavior from homosexual identity (e.g., men who have sex with men but don’t identify as gay; unsafe sex practices and rather than homosexual sex), particularly to address health issues (Jagose, 1996). 

To many, the masculine and feminine is still considered a binary opposition, yet the gender binary was not always a concept accepted in other times or by other cultures (Greenblatt, 2011; Shankar, 2015). Queer theory rejects the gender binary. However, the current dominant Western masculine-feminine binary carries into same-sex relationships; for example, within the lesbian community, the butch/femme dichotomy has been of defender/healer, and pleasure-seeker and giver/pleasure-receiver and sexually passive (Sullivan, 2003). Sedgwick argues that such a binary creates a sexual identity based on gender of sexual object, which reaffirms heterosexual norms (Sullivan, 2003). 

Generally, whites have been privileged in queer theory, since ethnicity/race as secondary identity (Jagose, 1996). According to thinkers like Anzaldúa, Cohen, and Moraga, there is a lack of intersectionality in queer theory, particularly around race and class. Queer theory “[…] has been accused of being, among other things, male-centered, anti-feminist, and race-blind” (Sullivan, 2003, p. 48). Thus, attention to intersectionality is needed to improve queer theory. Intersections of identity do not operate separately and then intersect; rather, they are simultaneously connected. The focus must be on understanding how they interrelate and function together, particularly in relation to power structures (Kelly, 2013). Intersectional queer theorists, including Gloria Anzaldúa, Cherri Moraga, and Cathy Cohen have focused on the intersections between race, sexuality, gender, and class. Notably, Gloria E. Anzaldúa’s Borderlands, published in 1987, “simultaneously invites disparate groups to imagine themselves otherwise and to engage purposefully in the difficult work of bridge-building” (McRuer, 2006, p. 39). While intersectionality systematically studies how differences in identities interrelate, queer theory can focus more on their fluidity, and expand to the plurality of identities each person possesses. 

In order to practice an intersectional queer theoretical model, first we must locate the intersections, to “look at the social settings where oppression intersects” (Fotopoulou, 2012, p. 22). We must recognize that research is often simplified to one group identity, and to be explicit about this in our research statements while also recognizing that experience is not tied to one identity, and “[…] acknowledge the dynamics of intersecting positions” (Fotopoulou, 2012, p. 22). The researcher must define their own identity and relationships. It is important to myself and my research to be out about both being queer and about being in recovery (McCruer 2006), in part because shame keeps us from addressing negative acts (Brown 2020) and accepting ourselves. Yet “[…] most people-myself included-still find it exceptionally difficult to theorize multiple forms of identity, and multiple strategies of disidentification, in conjunction with each other” (Bérubé, vii). Fortunately, the gaps and skewing leaves open space for other studies, theories, and lenses. In such a gap, crip theory emerged.

Crip Theory and Disability Lenses: an Overview

Like “queer,” “crip” is the reclamation of a term by a group that the term was originally used to demean. Crip theory and “cripping” addresses the dominant ideology in relation to disability. As queer theory holds that identity (in particular, sexuality and gender) is fluid, crip theory holds that able-bodiless is also a transitory state: “[…] able-bodied status is always temporary, disability being the one identity category that all people will embody if they live long enough” (McRuer, 2006, p. 30). In general, “crip” and crip theory have existed more among activists than academics. By engaging with the transitional nature of able-bodiless, cripping can lead to social change. For example, by people “coming out” as HIV positive (or as having potential to contract HIV), the discourse around HIV positive status as being a constant potential of unprotected sexual activity led to increased safe sex, as the burden moved from partners to a more social addressing of the issue (McRuer, 2006).  

Like homosexuality and queer identities, disability has existed throughout history but is often absent from written accounts. Some queer theorists locate queer figures in history who were not openly “out;” likewise, crip theorists can identify people who were disabled. Historical studies of mental illness, such as those linking creativity and bipolar disorder (Jamison, 1996), are one example. 

Just as heterosexuality is the dominant ideology, able-bodiness is considered the nonidentity, “the natural order of things” (McRuer, 2006, p. 1). Able-bodiness can include mental as well as physical qualities; a person experiencing a disability in the form of a mental illness is non-able-bodied. Like sexuality and gender, disability is socially determined, but like sex has a genetic component. This has conflated, for example, homosexuality being deemed “deviant” and therefore an indicator of mental illness. Surveillance of homosexuality as well as disability has been driven by the societal insistence on productivity:

[…] during the last two or three centuries bodies have been monitored (by disciplinary institutions and by increasingly compulsory self-policing) for signs of behavioral and physical difference that might impede their productivity; these signs of difference have been duly marked and, if possible, ’transformed and improved’.

(McRuer, 2006, p. 21)

This has led to representations of disability in culture conflating disability with character flaws, and there are cultural expectations for how queer and disabled people will behave. Expressed in popular culture, the ability to be able-bodied, particularly to no longer show signs of a behavioral disability, is mitigated by love, particularly heterosexual love. Queerness and disability are temporary statuses, used in culture as a foil or a plot device, and then discarded in favor of the able-bodied, heterosexual norm (McRuer, 2006). 

There is an impetus for “coming out” as disabled, similar to the liberationist standpoint of coming out as queer. Since the library is a space where multiple identities intersect, crip theory and its relationship to queer theory serves as a basis for consideration of improved services to individuals with disabilities.

Health-Information Seeking

Health information seeking behaviors (HISB) are a subtype of information seeking behavior (ISB), but no dominant definition for either ISB or HISB is established (Johnson & Case, 2012; Lambert & Loiselle, 2007). It may be helpful, then, to consider HISB in the broader context of information seeking, which “can be defined simply as the purposive acquisition of information from selected information carriers” (Johnson & Case, 2012, p. 16), such as a database or news provider, but can also include “serendipity, chance encounters, or when others share information that they believe may be useful to you” (Case & Given, 2016, p. 6). There are multiple accepted models of ISB (Case & Given, 2016). To me, ISB and therefore HISB will be considered part of a nested model of information behavior, where human communication behavior is the overall concept, with information behavior as the first nested concept, information-seeking behavior the second, and information search behavior the third (Wilson, 1999). Studies in information behavior generally focus on information seekers, particularly on communicators and communication channels (Johnson & Case, 2012; Wilson, 1999). Studies of HISB, especially those which investigate individual experiences of information seeking, have become more important due to an increasingly decentralized information environment in which consumers are considered partially responsible for their healthcare (Johnson & Case, 2012).

Information seeking is generally seen as arising out of a need to satisfy a goal (Wilson, 1999) and is conducted across many channels within each person’s information field (Johnson & Case, 2012). An information field consists of carriers and sources that an individual is exposed to and can consult. Carriers are repositories of available information within an information field and are classified into three classes: channels (e.g., the Internet), sources (e.g., doctors), and messages (e.g., the definition of depression). When information seeking, individuals follow information pathways, which are defined as “the individual behaviors people perform when seeking answers” (Johnson & Case, 2012, p. 30). People often become habituated in these information pathways. For example, while professionals often have richer information environments than most people where they can build information pathways (Johnson & Case, 2012), this does not mean such environments are always utilized, or that individuals without access to specialized environments lack advanced search skills (Dervin, 1983). 

HISB is “an agglomeration of information and method behaviors” (Lambert & Loiselle, 2007, p. 1015). Health information seeking is generally considered to be an active rather than a passive process, and is conducted in a dynamic, fluid, and non-linear manner (Lambert & Loiselle, 2007). HISB are typically studied within three contexts: coping with threats to health, involvement with medical decision making, and changing behavior to prevent illness (Johnson & Case, 2012; Lambert & Loiselle, 2007). There is a lack of research into the role basic psychological mechanisms play in motivations for engaging in ISB (Dubnjakovic, 2017); for example, a person’s need for information will not necessarily lead to their seeking information (Dervin, 1983; Lambert & Loiselle, 2007). 

Most individuals utilize multiple channels and sources for health information, which are selected based on personal and situational factors (Johnson & Case, 2012; Park et al., 2018). Most people have a preference for interpersonal and Internet information sources (Clarke et al., 2013; Dervin, 1983; Johnson & Case, 2012; Lucassen et al., 2018; Park et al., 2018; Schaller, 2011; Stewart & Kendrick, 2019). While interpersonal sources, particularly people who have experienced similar health and social concerns, can be beneficial and a way of developing relationships (Case & Given, 2016; Lucassen et al., 2018; Schaller, 2011), “not all questions can be answered out of the conversation within the […] community” (Schaller, 2011, p. 105). Internet sources can also create an impediment to gathering accurate health messages, as not all information on the Internet is accurate and many people, including clinicians, lack necessary health literacy to determine which messages are factual (Eliason et al., 2018; Johnson & Case, 2012; Lucassen et al., 2018; Stevens et al., 2018).

Borrowed theory is an element of my dissertation, and as such I’ve been reading a bit of social work theories. Like LIS, social work also incorporates queer theory. In social work, many health related SGM studies are HIV focused. HIV is often viewed as a sexually transmitted disease, though it can also be transmitted through other means, such as needle sharing. As such, theory around HIV seems, from my bit of reading, to be concerned with sexuality. Sexual and gender minorities are often only visible in research literature with respect to health disparities and in relation to sexuality (e.g., gay, lesbian, bisexual) rather than gender identity. 

There is a tenuous relationship between queer theory and the health sciences; for example, queer theory recognizes that public health and medicine are part of risk rather than saviors of the neglected and socially deviant (Argüello, 2016). This view recognizes the historical classism, racism, and heteronormity of the medical and health sciences; there is a connection between this idea of salvation by the dominant group that is connected to colonialism and imperialism. Of course, there is more to being queer than sexuality; as bell hooks states: “[…] queer not as being about who you’re having sex with (that can be a dimension of it); but queer as being about the self that is at odds with everything around it and has to invent and create and find a place to speak and to thrive and to live” (hooks, 2014).

Additional research on the HISB of sexual and gender minority (SGM) individuals seeking information about mental health concerns is needed (Lucassen, 2018; Stewart & Kendrick, 2019). Due in part to stigma and discrimination (SAD) and related trauma, SGM individuals are more likely to experience mental health disorders (Gnan et al., 2019; Scheer et al., 2019; Schulman & Erickson-Schroth, 2019; Stevens et al., 2018). Understanding SGM HISB for mental health concerns can help make the information environment more accessible and potentially increase mental health literacy. Additionally, since SGM individuals have many of the same health concerns as the general population (Bednarski, 2019), but as an effect of SAD frequently have different information seeking behaviors (ISB) than non-SGM individuals (Morris & Hawkins, 2016), studying this population can inform SGM specific initiatives as well as those intended for broader audiences.

Heterosexual and cisgender norms have far-reaching effects for health. For example, they contribute to the denial of lesbian domestic abuse: since women are often not considered capable of being aggressive or violent, and lesbians are often considered part of a tightly-knit community due to their outsider status in a heterosexual society, the concept of same sex partner violence by women continues to be considered by many an impossibility and, if reported, a violation of the lesbian sisterhood (Machado, 2019). Similarly, in the dichotomy of homosexuality versus heterosexuality, bisexuality is an “anti-identity” (Clauses, 1996 qtd. Sullivan, 2003), one of the “invisible” identities in queer theory,2 which has ramifications for bisexual’s health. Likewise, the gender binary impacts mental health diagnostics; for example, in part due to ADD/ADHD research focusing on male-sexed subjects, attention-deficit disorder is diagnosed later in women’s lives than men’s, and females often have more severe symptoms than males (Biederman et al., 1999; Collingwood, 2018). There is an increased risk for substance use disorders for people, especially youths, who have untreated ADHD (NIDA, 2020), as well as other mental illnesses, meaning that early diagnosis is key for long-term health. 

A reminder that queer theory is poststructuralist and view sexuality as a construct. According to Foucault, this construct began in in the 18th century as sexuality became a private concept, and medical/scientific discourses became the dominant structure: “[…] sexuality was nothing more than an idea, with sex being nothing more than socio-political expressions of that idea” (Argüello, 2016, p. 234). As linked to McRuer’s ideas discussed in the previous section, this led to sexuality being considered as a type of person rather than an act; “[…] the focus on sex/uality has shifted from acts to identity […]” (Argüello, 2016, p. 234). 

Medicine and public health are part of a culture, a form of discourse (Argüello, 2016). Integrating queer theory into these disciplines can normalize death as part of life, and address stigma of disease. This may seem counterintuitive to practitioners, especially in public health, as this field focuses on disease and risk. Queer theory can interrogate the concept of risk as an easily defined and manageable concept by recognizing that risk is, at its core, uncertain and needs to be transparent (Argüello, 2016). 

Queering Information Spaces

By queering/cripping something, we are not ignoring intersectionality, but rather making explicit the normalizations surrounding different identities. This allows for the creation of non-normative gender and sexuality categories as well. Queer can be a verb if it recognizes difference, “declaring war on all norms, all authorities” (Beasley, 2005, p. 173). Such authorities can take the form of information spaces and their workers, as well as classification and cataloging systems. In general, information science and librarianship do not have cultural methods or queer studies as part of their discipline (Kelly, 2013). Other spaces, including public mental health services (PMHS) and library classification systems, are limited by positivism and essentialism, as well as a US-central focus (Drabinski, 2003; Semp, 2011). Additionally, within PMHS, most of the literature focuses on private mental health services (Semp, 2011). 

Organizational patterns in classification and research are not made objectively and do not operate free of bias (Stone, 2013, xii). “Objective” and “bias-free” study approaches are rarely such; rather, they serve to reinforce norms and exclusions (Semp, 2011). One way to address this as a researcher is to practice reciprocity, such as being clear about one’s own identity in the research statement. Another is to engage in narrative therapy, which explicitly recognizes the Foucaultian idea that language constructs and is constructed by the presence of in/out groups. This can be achieved by separating the subject from the subjective. As Semp explains:

For example, instead of asking MSM3 ‘What is your sexual orientation?’ (a question which assumes the recipient has a unitary sexual orientation and locates the sexual orientation within the individual), I asked alternative versions such as ‘How do you describe or think of your sexuality or sexual orientation to yourself?’ This question assumes there are multiple ways of understanding sexuality, that people may have preferences for particular versions and that these preferences may differ depending on the context.

(2011, p. 72)

Similarly, classification of materials can be queered. Again, queer theory recognizes that categories are always shifting and culturally dependent, and classification is a product of culture. Subject headings produce rather than reflect reality; they create a “field of context” for identity and resistance (Drabinski 2013, p. 103). Or, to paraphrase Butler: “A claim to identity always relies on the production of an identity category that simply is not what I am” (Drabinski 2013, p. 104). While new identities are always emerging, controlled vocabularies are limited, restrictive, and change resistant. The evolving nature of culture, identity, and language mean that such classifications cannot remain fixed, but rather need to be recognized as a fluid dialogue about organization of and access to knowledge.

According to Drabinski:

In the library context, queer theories can refocus attention away from the project of producing “correct” knowledge organization systems, pointing toward a project of dialogic pedagogical interventions that push all users to consider how the organization of, and access to, knowledge is politically and socially produced. […] the project of a critical library classification becomes less about correction and more about locating the ruptures in the structure […].

(2013, p. 101)

In other words, queering cataloging and classification can make change decisions evident, while recognizing and teaching users that these categories are always fluid. Context is what makes language meaningful, and since the user’s definition of themselves may not fit into structure, there is space for other terms to be included by the users themselves. By interacting with biased organizational approaches, users encounter and ingest stereotypes and other negative information. For example, by having materials about transsexuality placed by materials about homosexuality, the user may conclude that gender and sexuality are the same. This conflation of gender and sexuality ignores the fact that queer theory and lesbian/gay studies have different goals: lesbian/gay studies are focused on representation and “[…] what homosexuality is,” while queer theory considers “[…] what homosexuality does” (Drabinski 2013, p. 96).

Interrogation with the catalog can begin through user experience, particularly library instruction, where the user and the librarian can engage in critical cataloging by questing biases in classification and utilizing new language to better describe and make accessible this material. The user can learn to recognize that “[…] catalogs reflect a particular point of view rather than an objective truth […]” (Drabinski 2013, p. 105), and that placement “tells an ideological story” (Drabinski 2013, p. 98). Biased cataloging can be addressed not by deciding that it can be fixed, but by making classification visible to users and utilizing local sources to describe materials (Olson 2001, qtd. Drabinski 2013). This includes using the vernacular in MARC records, varying citation order, allowing for user notations of records, creation of alternative thesauri by users, and utilizing user tagging to design subject vocabulary. By engaging users in questioning the catalog and creating dialog rather than compliance (Drabinski 2013, p. 107), a critical pedagogy can be created in library instruction spaces. Users can learn to use as well as resist and create classification. 

Classification has implications beyond the catalog: gender classification in medical and other record-keeping has disastrous effects for trans and gender non-conforming individuals. Misclassification is especially consequential for vulnerable populations, including people of color, the impoverished, and immigrants. Most trans people do not have a cohesive set of documents that reflects their gender identity, especially if they have not undergone gender affirmation surgeries. This impacts the majority of trans and gender nonconforming individuals (TGNC), as most TGNC people have not undergone these surgeries due to their prohibitive costs; despite popular conceptualization, surgery is not the “hallmark of trans experience” (Spade, 2013, p. 332). The lack of accurate gender classification systems has a negative impact on healthcare access for TGNC individuals, and not being able to access gender-confirming medical care has consequences for TGNC people, including suicidality and an increased rate of HIV infection (Spade, 2013). Information professionals can act to improve these organizational structures by expanding gender categories and lobbying for the inclusion of gender affirmative supports, including in the healthcare system.

Along with materials, libraries also provide Internet access. The Internet acts as “a virtual lifeline” for SGM individuals, where they can explore identity, connect with others, and form political and social activist groups (Greenblatt, 2011, p. 1). Online interaction is “[…] a channel to becoming, a real-time co-construction of identity, fostering en vivo (physical) encounter” (Argüello, 2016, p. 241). There is a growing body of knowledge regarding the creation of identities in other virtual spheres, such as video games, by queer people. Internet culture provides a social space for people to discuss and express their identities, which can lead to both individual understanding as well as broader conceptualization. For example, the oft-used Gender Unicorn was mapped with concepts that may have originated on social media sites, including Reddit and Tumblr (TSER, n.d.). Yet commercial filters create a “digital closet” by often blocking out this access to sexuality and gender information, especially for youth (Schrader, 2013, p. 88). Such filters include “Gay/Lesbian Topics,” “sexual lifestyles outside of marriage,” sex education, and “Sexual Materials” (Schrader, 2011, p. 89). Not being able to access these sites is not only a violation of First Amendment rights, but also has implications for the mental health and general wellness of SGM, especially youth who are questioning their sexuality (Schrader, 2011). Libraries can refuse to employ such filters, and to advocate for their termination. 

Queering Health Information Seeking

Information behavior research needs to incorporate “critical perspectives on knowledge and knowers, particularly on what it means to share information and what it means to be silenced, and on how knowledge is experienced differently by different groups of people” (Williams & McKenzie, 2013, p. 425). Information science suffers from a divide between scientific positivism and cultural inquiry. Exacerbating this issue is the gendering of scientific positivism as male, and its benefit from the defunding of women-dominated departments (Kelly, 2013). Queering health information seeking means to interrogate the structures of knowledge and the barriers for access by disenfranchised groups, to reveal power structures and biased classification systems. Rather than seeing information seekers as ignorant, we can recognize the sociopolitical barriers to information access, including internalized stigma and discrimination that impacts the ability of people to search for and understand information about their sexualities, gender identities, and mental health. Queering health information centralizes access to information and highlights the intersectional barriers marginalized people face to this access. 

Next Steps

I received the Bob Williams Research Grant from ASIS&T SIG-HFIS, which I will be using to explore historical mental health information in LIS. I expect to find reflections of historical misclassification of non-dominant sexes, sexuality, and genders as psychiatric ills and I will use the findings from this study to argue for the cripping of the catalog. Additionally, I plan to continue to read about queer theory, and how to queer and crip information spaces. My goal is to use the concepts of cognitive load theory and information poverty, coupled with the methodology of sense-making, to continue building a framework from which to undertake my dissertation research into the health information seeking behaviors of SGM individuals with mental health concerns, particularly substance abuse and addiction. I will take my comprehensive exams in Spring 2021.

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