Eliciting Narratives of Disorientation: A Methodological Exploration

Abstract

This article offers a methodological framework for eliciting and reading narratives of, what Sara Ahmed has termed, disorientation. Drawing on the findings from a project on lesbian and queer women’s orientation toward HIV objects, knowledges, and subject positions in Australia, it concludes with a reflection on gathering “difficult” or “reluctant” narratives.

Keywords:

• Disorientation
• lesbian
• fragmented narratives
• life writing methods

Introduction

In October 2019, the first author of this article, Kate, interviewed Ellen, a queer cisgender woman, who was awaiting an appointment with her general practitioner (GP) to request a prescription for pre-exposure prophylaxis (PrEP) – medication taken to reduce the risk of acquiring HIV.¹ Ellen’s perception of herself as a suitable candidate for PrEP was notable. Most Australian clinicians have limited experience-prescribing PrEP to cisgender women,² and previous Australian research has indicated that cisgender women are not knowledgeable about PrEP.³ Indeed, at the time of interviewing, women accounted for just 1.5% (n = 580) of all Australians who had been dispensed PrEP under the Pharmaceutical Benefits Scheme.⁴ When asked how she had first encountered information about PrEP, Ellen explained:

I remember a few months ago, I was in the…CBD and walking past these ginormous posters that were plastered along the sidewalk and they were advertising PrEP, and…it was definitely marketed towards men. The imagery, I think, was like two gay men on some of the posters and then a very masculine looking poster, like…strong framing and things like that. And I think I had just walked past the posters not really taking it in because it wasn’t marketed towards me. But then my partner, who’s a cis man, stopped and was very taken in by it… He stopped and I had kept walking, but then he was like “hey come back and look at this.”

Soon after seeing these posters, Ellen’s partner visited their GP and obtained a prescription for PrEP. Ellen later described seeking out women and gender-diverse sex educators on Instagram to research whether PrEP was appropriate for “people with vulvas.” However, she clarified that her partner “rais[ing] the idea of [her] going on” PrEP prompted her to act “faster than [she] otherwise would have.” In other words, if her cisgender male partner had not stopped walking and responded to the interpellating hail of the PrEP advertisement, PrEP “would just be something in the back of [her] mind.”

In this article, we draw on Kate’s doctoral research, exploring lesbian and queer women’s place in the Australian HIV landscape, to consider how qualitative researchers might elicit narratives of, what Sara Ahmed has termed, disorientation.⁵ Disorientation, Ahmed explains, occurs in fleeting moments when we “notice orientation as something we do not have.”⁶ The embodied distress inherent in such moments “can shatter [our] sense of confidence in the ground or [our] belief that the ground on which we reside can support the actions that make a life feel livable.”⁷ Other scholars have followed Ahmed’s theorizing of disorientation, writing on their own experiences of disorientation – surrounding, for example, mental illness, workplace transition, or cancer –⁸ or adopting a framework of disorientation to examine existing qualitative data.⁹ In contrast, we turn to the life writing literature, and, in particular, to Sara Wasson’s work on fragmented narratives of chronic pain, to propose a method for eliciting and reading first-person accounts of disorientation.¹⁰ To do this, we address the following questions: what research contexts and methodologies might facilitate the collection of narratives of disorientation? What barriers might there be to such narratives being articulated? And what kinds of conceptual tools might enable us to make sense of the narratives that emerge from studies of disorientation? Although the exemplar used throughout this article is specific to queer and HIV studies, we hope the methodological insights presented might prove useful for those working across a broad range of research contexts.

In the following section, we offer an overview of lesbian and queer women’s erasure from dominant HIV knowledges in Australia. We then outline Ahmed’s theorizing of (dis)orientation, before demonstrating how the literature on narrative (in)coherence can provide useful methodological strategies for capturing both affective experiences of disorientation and their social, political, and historical contexts. Returning to the opening vignette, this article concludes with a reflection on practical challenges for scholars seeking to elicit narratives of disorientation.

The Erasure of Lesbian and Queer Women from Dominant HIV Knowledges

Epidemiological categories in the “global North” do not recognize sex between women as a potential route for HIV transmission.¹¹ In Australia, when a person is diagnosed with HIV, their health-care practitioner is required to record all potential routes through which transmission might have occurred. HIV surveillance organizations (or the individual health-care practitioner) then use a “hierarchical classification of transmission routes” to determine the person’s most probable source of exposure.¹²

For women, exposure to HIV must be recorded under one of the following categories: vertical transmission (i.e. mother to child), hemophilia coagulation disorder, receipt of HIV-infected blood or tissue, intravenous drug use, heterosexual sex, undetermined exposure, or as acquired overseas.¹³ If a woman is diagnosed with HIV and reports previous sexual contact with both men and women, her exposure is recorded as heterosexual sex. If she reports no previous sexual contact with men but has ever used injecting drugs, her exposure is recorded as injecting drug use. If she has never used injecting drugs or engaged in sexual contact with a person of the opposite sex, her exposure to the virus is recorded as undetermined.¹⁴

While few HIV notifications in Australia are attributed to an undetermined source of exposure (3% of all notifications in 2021; 4% in 2020), some lesbian and queer women do, of course, acquire HIV.¹⁵ In the United States, a small number of medical publications suggest that “female-to-female” sexual transmission of HIV is possible; however, these publications tend to report on individual cases where a woman has been diagnosed with HIV or AIDS but reports no “risk” activities other than sex with women.¹⁶ Alongside the epidemiological assumption that the risk of “female-to-female” sexual transmission of HIV is “negligible,” this discursive framing makes it difficult for lesbian and queer women who engage in other “higher-risk” practices, such as sex with men or injecting drug use, to surface at all.¹⁷ In other words, for lesbian and queer women to become “fathomable” in HIV epidemiological classifications, “their queerness must be subsumed.”¹⁸ Given this epidemiological erasure, it is impossible to even approximate the number of lesbian and queer women who are living with HIV or have died from AIDS-related illness in Australia.¹⁹

In the following section, we turn to Sara Ahmed’s theorizing of (dis)orientation to provide a framework through which we might understand lesbian and queer women’s experiences within the Australian HIV landscape.

Sara Ahmed’s Theorizing of (Dis)Orientation

Sara Ahmed’s theorizing of orientation builds on Edmund Husserl’s interest in the spatial organization of bodies and “things” and begins from the “zero point of orientation, the point from which the world unfolds.”²⁰ Orientation involves both direction and movement. From the start, we are positioned along lines that move us toward particular futures and form our perceptions and experiences of “the world.” For Ahmed then, starting from the question of orientation allows us to consider how certain subjects, objects, and ways of being become (un)reachable to us, depending on the directions we face. In turn, it asks us to examine how our “bodies take shape” when we (re)trace the lines that have been laid out before us.²¹ These lines and our orientation toward them are neither coincidental nor inevitable. Rather, their normalization is a performative effect of their repetition; it is, Ahmed argues, in “follow[ing] what is already given to us” that particular lines become naturalized.²² As a result, our orientations and the work that is required to maintain them become concealed – their effects are “experienced…quite simply, [as] what it means to be.”²³

Of course, we do not always follow the lines that have been laid out before us. Lesbian and queer women diverge from heteronormative lines in their sexual and romantic attraction toward other women. In moving “off line,” lesbian and queer women’s sexual orientation not only affects their choice of sexual and|or romantic partner(s); it also interferes with how we might “live in [a] world” that is organized around “heterosexual objects.”²⁴ In the context of HIV, this is evident when lesbian and queer women experience homophobia in health-care settings or when health-care practitioners are dismissive of their concerns.²⁵ Such encounters work to remind lesbian and queer women that HIV knowledges do not always extend to accommodate their bodies, identities, and desires. It is in these moments that our orientations become both visible and felt; we become disoriented in their reminder that we are “out of place.”²⁶

Sometimes, the cost of being disoriented is high enough for us to welcome our reorientation.²⁷ Some lesbian and queer women, for example, choose to conceal their sexual or gender identities from their health-care practitioner. While there are diverse and complex reasons for such instances of non-disclosure, “passing” as heterosexual or cisgender can allow some LGBTQ people to circumvent potential discomfort and discrimination.²⁸ Yet, becoming straightened can prove injurious in itself. In Canada, Carmen H. Logie and Margaret F. Gibson have detailed how “straightening devices” are used to (re)orient lesbian and queer women within HIV epidemiological discourses.²⁹ Using Judith Butler’s notion of “the mark [of violence] that is no mark,” Logie and Gibson argue that when epidemiological data records lesbian and queer women’s acquisition of HIV through an instance of homophobic sexual violence as “heterosexual,” the “violence [and]…non-[heterosexual]” nature of their HIV acquisition becomes obscured.³⁰ The limitations of these categories are perhaps clearest when thinking about sexual violence but render all lesbian and queer women’s bodies, identities, and desires “unfathomable” in HIV knowledges.³¹ Thus, lesbian and queer women’s inclusion in HIV spaces becomes contingent on their compliance with already-existing notions of what it means to be a person living with HIV. Their sexual identities become “subsumed,” and they are required to (re)trace the (hetero)normative lines before them.³²

The question, however, remains: how might we formulate research methods to facilitate the collection of these, often ephemeral, moments of disorientation? One potential avenue, we contend, lies in the life writing literature to which we now turn.

Life Writing and Narrative (In)Coherence

Life writing work, which draws on disability studies and medical humanities research, has long observed how lived experiences of disablement and illness both implement conventional narrative forms and exceed their constraints. Life-writing practitioners and theorists, such as Ellen Samuels and Margrit Shildrick, have pointed toward the specificities of crip temporalities.³³ Many scholars have, in particular, pointed to the lure, but also the limits, of familiar narratives of overcoming or recovery.³⁴ For some disabled and chronically ill people, socially sanctioned coherent accounts of “getting better” are simply not relevant. Within the discipline of philosophy, there have been debates over the necessity of telling a coherent narrative for mental wellbeing. Galen Strawson, for example, has suggested that, for some, healthy subjectivity is experienced as fundamentally episodic, while Catriona MacKenzie and Jacquie Poltera have proposed, in contrast, the need for a coherent life narrative for wellbeing and a sense of identity.³⁵ Life writing scholarship has been less preoccupied with such normative debates and more concerned with the way narratives have material consequences, particularly in institutional settings. Angela Woods, for example, notes that in health institutions, “doing good narrative,” in the words of Maggie Hall and Kate Rossmanith, is an integral part of the exchange between practitioner and patient – even in health institutions that underscore the value of first-person accounts.³⁶ Others, such as Leigh Gilmore and Sara Wasson, have emphasized that, regardless of whether they are to be celebrated, fragmented narratives are a product of particular lived experience that must be accounted for within narrative research.³⁷

In her writing on chronic pain, Sara Wasson offers an alternative to the temporal orientation that is often privileged in illness narrative conventions.³⁸ Illness narrative arcs, she explains, tend to presume the ill person is moving toward the future with “an expectation of beneficial transformation in time.”³⁹ While Wasson does not critique this narrative arc in itself, she elaborates that conditions such as chronic pain do not align with this temporal orientation, due to the difficulties associated with both diagnosing and “curing” them.⁴⁰ People living with chronic pain, for instance, often cannot access the subjectivities or linguistic resources to construct a coherent narrative of their experiences. To address these instances of “narrative transgression,” Wasson moves beyond a “narrative arc of ‘restitution’” to focus on moments or fragments of narrative that “construct an emergent present.”⁴¹ In particular, she argues that the episodic nature of flash writing might be used to hear, what Arthur W. Frank has termed, “chaos” narratives.⁴²

The bodies that live and write “chaos” narratives are, in Ahmed’s words, disoriented – not momentarily, but repeatedly and continually.⁴³ The paths that such bodies have been oriented toward become blocked, their directions toward the future become unclear, and their (perceived) control over their life and self becomes lost.⁴⁴ The resulting stories are devoid of a coherent sequence or form, and the listener is confronted with “an incessant present with no memorable past and no future worth anticipating.”⁴⁵

Indeed, some lesbian and queer women need to tell “chaos” narratives about their experiences with HIV and AIDS. To illustrate, we witness a chaos narrative in the artist and AIDS activist Zoe Leonard’s installation piece, Strange Fruit (for David) (1992–1997).⁴⁶ Upon returning to the United States from India in 1992, Leonard recounts that she was “tired of wasting things. Throwing things out all the time.”⁴⁷ Using a technique borrowed from friend and fellow artist, David Wojnarowicz, she began sewing together the peels of fruit she had eaten, using thread, zippers, buttons, and wire to recreate a hollowed version of the fruit’s original form. Over the next five years, she would amass almost three hundred orange, banana, grapefruit, lemon, and avocado peels, which are now held in the Philadelphia Museum of Art.

Leonard’s “obsessive” sewing together of these fruit skins and their eventual scattering across the museum floor echoes the repetitious “and then, and then, and then” of Frank’s chaos narrative.⁴⁸ In an interview with Anna Blume, Leonard elaborates, “I didn’t even realize I was making art when I started doing them.”⁴⁹ Rather, she describes her initial compulsion to repair “something broken” as “a sort of meditation, a private act of mourning,” which allowed her to reflect on her relationship with David Wojnarowicz, who had died from AIDS-related illness in 1992.⁵⁰ She continues,

I’d think about the things I’d like to repair and all the things I’d like to put back together, not only losing him [David] in his death, but losing him in our friendship while he was still alive. After a while I began thinking about loss itself, the actual act of repairing. All the friends I’d lost, all the mistakes I’ve made. The inevitability of a scarred life. The attempt to sew it back together.⁵¹

Leonard later decided against preserving her entire collection of fruit. The installation remains fragile and is subject to transformation and decomposition, alongside our individual and collective memories of the AIDS epidemic. Over time, her careful alterations have become more prominent. Vibrant strands of thread stand stark against the faded and shrinking skin of rotting fruit. The collection is, Leonard writes, “an absurd act of repair.”⁵² Despite our desperate “attempt to hang on” to our memories of loved ones, “we forget.”⁵³ In the end, even our memories “[turn] to dust.”⁵⁴

Without Leonard’s reflective narration, Strange Fruit (for David) is difficult to read – there is neither coherent sequence nor resolve to Leonard’s compulsive and repetitive crafting. But this was never her intention. When she began, Leonard was not attempting to narrativize her grief. She was endeavoring to “sew [herself] back up.”⁵⁵

Lesbian and queer women’s “chaos” narratives must be accounted for within research on HIV and AIDS. Listening to “chaos” narratives is an ethical imperative; we must not, Frank reminds us, “rush to move [the narrator] on” from their “wreckage.”⁵⁶ Rather, it is in sitting with the weight of such moments that we might attend to lesbian and queer women’s “embodied suffering” outside of (or prior to) its reflective inscription in a broader narrative arc.⁵⁷ Nevertheless, we did not anticipate that chaos narratives would be foregrounded in this article’s exemplar, which focused on lesbian and queer women’s more recent experiences within the Australian HIV landscape. In short, if most lesbian and queer women encounter HIV in single, fleeting moments due to their exclusion from HIV knowledges, it seemed improbable that such moments would culminate in them being “sucked under” into a “life [that] never [appears to get] better.”⁵⁸ For this reason, we were most interested in Wasson’s argument that fragmented narratives are “infused with heterogeneous lines of force.”⁵⁹ Drawing on, among others, Lisa Diedrich’s theorizing of illness narratives, this approach promotes a focus on both our embodied positionalities and the histories through which these orientations come to be.⁶⁰ In other words, it is through listening to stories that arise out of a moment of embodied experience that we might account for the situated nature of our orientations, as well as “the institutional contexts” that render, in this article’s example, lesbian and queer women’s experiences of HIV unintelligible.⁶¹

Further, Wasson argues that a focus on episodic narratives allows us to comprehend how our prior disorientations cumulate to form particular emotional effects.⁶² We begin, she suggests, to pre-empt our failure to be oriented along normative lines. Ami Harbin et al. for instance, have articulated that queer women often experience discomfort when deciding whether to disclose their sexual identities to their health-care practitioner.⁶³ This discomfort is heightened in scenarios where their healthcare practitioner could refuse to provide them with “safe and good health care as a result of being queer.”⁶⁴ Hence, we contend, it is in listening to the “emergent present” of disorientation that we might attend to lesbian and queer women’s “sociocultural context” and “discrete experiences” of HIV and AIDS, prior to their (re)orientation along normative lines.⁶⁵

Analyzing Episodic Narratives of Disorientation

Like Ahmed, Wasson’s focus on the affective dimension of lived experience, alongside its social, political, and historical context, prompts researchers to adopt a combined poststructuralist and phenomenological approach. In this section, we turn to Carol Bacchi and Jennifer Bonham, who offer a practical guide for examining qualitative data using a Foucauldian poststructuralist lens, before considering the limitations of their framework for reading episodic narratives of disorientation.

Building on her “What is the Problem Represented to Be?” (WPR) framework, Bacchi has, with Bonham, imagined how her theoretical work on problematizations might be used to conduct a Foucauldian “Poststructural Interview Analysis” (PIA).⁶⁶ Responding to critics of Foucauldian-informed interviewing practices, the PIA framework aims to provide a practical method for reading interview transcripts, without returning to humanist conceptions of “the subject.” Bacchi and Bonham present seven questions to guide researchers through their PIA approach:

1. Precisely what is said in the interview?

2. How was is or is it possible to say those things?

3. Which networks of relations (discursive practices) are relevant to the interview topic?

4. What do the selected “things said” produce as “subjects,” “objects,” and “places”?

5. How do the interviewers and interviewees problematize “what they are, what they do, and the world in which they live”?

6. Which “things said” put in question pervasive ways of thinking?

7. What political consequences follow from interviewers’ selection and distribution practices?⁶⁷

Similar to the WPR frame, these questions aim to propose an analytic approach that draws on Foucault’s archaeological and genealogical methodologies. However, while this framework is productive in thinking-through how qualitative data might be analyzed under a Foucauldian poststructuralist lens, its emphasis lies on the transcription of “things said” during a research interview.⁶⁸ It does not account for how discourse circulates outside the bounds of written text; that is, through tone, gestures, and speech patterns, such as folded arms, pauses in speech, and rushed responses. Nor can it account for how discourse is imbued in the structure and form of solicited written responses – in, for example, capitalization, italicization, and enjambment. We argue that it is, in part, due to the performative nature of these subtle attributes that qualitative data is often distinct from text-based documents (i.e. government policies) and remains essential to poststructural research methods.

Further, while Bacchi and Bonham’s focus on “what is said” involves a certain “de-person-alization” of qualitative data, it is important to consider how we might “do justice” to our participants’ affective responses.⁶⁹ In making this point, we do not intend to suggest that Bacchi and Bonham’s method is negligent of research participants nor that a Foucauldian focus on problematizations cannot account for the lived effects of particular power-knowledge regimes. Indeed, Bacchi’s WPR (and subsequent PIA) approach includes an explicit emphasis on how discursive and subjectification practices “translate into people’s lives” and their possibilities for disruption and rearticulation.⁷⁰

But, as Diedrich writes, Foucault’s oeuvre “sometimes fails to provide a [coherent] theoretical or methodological model for reading experiences of loss such as those articulated in illness narratives.”⁷¹ While the project exemplified in this article did not foreground lesbian and queer women’s personal experiences of suffering, we contend, like Wasson, that Diedrich’s simultaneous interest in effective and affective histories provides a useful method for reading episodic narratives of disorientation.⁷² Effective histories are grounded in Foucault’s genealogical method and aim to trace the continuities, discontinuities, and struggles “that reverberate across time and space, waiting for the future to hear them.”⁷³ Aligned with Bacchi and Bonham’s PIA approach, effective histories demonstrate that discursive practices are “contingent historical creations” rather than stable and incontestable “truths.”⁷⁴ Affective histories, in turn, allow us to understand how lesbian and queer women’s orientations toward certain HIV objects, knowledges, and subject positions are felt, circulated, and embodied.⁷⁵ Not all episodic narratives will contain a strong effective and affective dimension.⁷⁶ But listening for both the effective and affective dimension of such narratives enables us to comprehend, first, how our positionalities are contingent on and co-constitutive of particular “norms and conventions” and, second, the affective weight of “being in the world.”⁷⁷

Last, while Ahmed emphasizes the importance of tracing moments when we become disoriented, she cautions against “legislating disorientation as a politics” in itself.⁷⁸ Rather, her interest lies in both questioning where alternate, non(-hetero)normative “lines” might lead and interrogating what the queer occupation of “straight lines” might do.⁷⁹ Hence, it is not enough to explain, “what is repeated” in a given scenario.⁸⁰ We must, instead, focus our political attention on the “paths” down which these repetitions direct us, and on the hope that is embedded in the failure to “line up.”⁸¹

In the final section, we turn to reflect on an example in which all efforts to gather episodic narratives using a bespoke online platform were unsuccessful. Here, we focus on the affordances (and limitations) of qualitative research methods in soliciting episodic narratives of disorientation.

Learning from a Failed Example

During their PhD, Kate followed Wasson and Sharon Ruston in developing a website to elicit episodic, autobiographical narratives about HIV from seronegative and seropositive lesbian and queer women living in Australia.⁸² Participants were encouraged to submit one or more life narrative fragments to a Qualtrics questionnaire. Responses could include short-form text (for example, a poem or autobiographical prose), an image, an audio clip, or a video. While the response section included few parameters, it was suggested that participants’ submissions might speak to their direct experiences with HIV, or a time when the participant had encountered a depiction of HIV, a conversation about HIV, politics around HIV, or were witness to other people’s experiences of HIV. With the participant’s consent, each submission was then posted to the website.

In mid-August 2019, Kate posted the recruitment advertisement to several Australian LGBTQ and HIV-related Facebook groups, as well as to their own personal Facebook, Twitter, and Instagram accounts. However, while these advertisements were shared almost 100 times across these platforms, just six posts were submitted to the website between August and December 2019. Becoming increasingly concerned that she would not be able to collect the amount of data required for a qualitative PhD thesis, she posted the second recruitment advertisement to five Australian LGBTQ Facebook groups, hoping to get a head-start on finding in-depth interview participants. Kate also reached out to the three participants who had expressed an interest in taking part in an interview when submitting a post to this project’s website. Within two months of posting these recruitment advertisements, eight in-depth interviews had been conducted.

In some respects, the website had failed to capture the attention of its intended audience. There are several potential reasons for this failure – perhaps the recruitment advertisement was unclear or the website was difficult to navigate. We would, however, like to reflect on several conversations Kate had with participants, before meeting, wherein the participant raised concerns about whether their participation in the project was “valid.”

After seeing the recruitment flyer on an LGBTQ Facebook group, one participant contacted Kate and offered to take part in an interview. One week later, and after Kate had emailed them an information and consent form, the participant reached out to confirm that “I don’t have to have HIV or [a] major interaction with it” to take part in the project. Another participant, in her initial email to Kate, expressed that she had “no personal experience with HIV” but would be willing to participate in an interview.

Overall, participants were hesitant for their involvement in the project to overshadow the voices of those whose lived experience of HIV and AIDS was deemed to be more “significant.” This fear is not unfounded. Lesbian and queer women who claim to hold an intimate investment in HIV objects and knowledges have been accused of either diverting attention from the “rightful” recipients of HIV funding or experiencing an unsubstantiated “feeling of endangerment” owing to their involvement in AIDS caregiving and activism.⁸³ Unlike the website then, where participants were required to have an experience in mind to submit, the semi-structured format of the in-depth interviews provided a space for lesbian and queer women who did not think of themselves as having a “significant” personal connection to HIV to co-construct their account in response to direct and fragmented questioning regarding the scope and nature of their experiences.

As demonstrated in the vignette opening this article, wherein Ellen’s partner encouraged her to stop and read the HIV prevention advertisement, the silencing of lesbian and queer women from discourses of HIV and AIDS generates lived, material, and embodied effects. Stopping devices, Ahmed explains, are “material-semiotic” and “rhetorical” apparatuses that impede marginalized bodies from moving through or “inhabiting space.”⁸⁴ Certain bodies, Ahmed elaborates, are “stopped” more than others. Racialized bodies, for example, are “held up” when moving through airport checkpoints.⁸⁵ Elsewhere, Valo Vähäpassi has demonstrated how bathroom policies, legislation, and signage can “force” transgender, gender diverse, and gender non-conforming bodies “to follow the normative cis[gender] line” or prohibit them “from existing in public [space]” altogether.⁸⁶ Here, Ahmed’s interest lies in the violence associated with recruiting (certain) subjects into the fabric of an institution. After all, to “stop” is also “to cease, to end, to cut off, to arrest, to check, to prevent, to block, to obstruct, or to close.”⁸⁷

But “stopping” can also signal that our bodies, identities, and desires have been recognized in dominant social, political, and historical discourses. Public health initiatives interpellate individuals into health-conscious subject positions, urging them to become responsible for their own health, as well as the health of their families and communities. In Australia, HIV organizations are often organized around maleness. Those who can extend to “inherit the ego ideal of” the institution are then recruited and compelled to respond to HIV prevention information.⁸⁸ The violent histories of stigma that have been attached to communities associated with HIV are well-known. However, as Ellen’s vignette demonstrates, those who are not the intended audience of HIV prevention information must be re-oriented to apprehend the objects and knowledges that, while appearing in their peripheral vision, circulate just outside of reach.

Like Ellen’s partner, our research methods (re)orientated our participants to (re)examine their prior engagement with particular HIV objects, knowledges, and subject positions. The questions Kate asked during the interviews, the narrative threads she identified during the coding phase, and the reactions she had to participants’ responses – verbal and non-verbal, intentional and unintentional – all shaped the kinds of stories that became (im)possible for interviewees to tell. Even so, her persistent prompting during the in-depth interviews remained integral to providing an occasion for participants to narrate new (albeit fragmented) kinds of stories.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by a Macquarie University [Research Training Program Scholarship].

Notes on contributors

Kate Manlik

Kate Manlik is a PhD candidate in cultural studies at Macquarie University. Their research seeks to problematise lesbian and queer women’s place in the Australian HIV landscape and has been published in Feminist Media Studies and Signs: Journal of Women in Culture and Society. She is currently working on a collaborative project, examining doctoral students’ well-being and access to support initiatives during the COVID-19 pandemic in Australia.

Nicole Matthews

Nicole Matthews teaches media and cultural studies at Macquarie University in Sydney. Her most recent book (written with Naomi Sunderland) was Digital Storytelling in Health and Social Policy (Routledge 2017). She has published articles and essays at the conjunction of media, disability and deaf studies in a wide range of journals including Life Writing, Signs, Feminist Media Studies, Television and New Media, Media, Culture and Society, Storytelling, Self and Society and Australia Feminist Studies.

Notes

1 This project received ethics approval from the Macquarie University Human Research Ethics Committee.

2 Smith et al., “Clinician Imaginaries of HIV.”

3 Dews, “HIV Elimination in Australia.”

4 Kirby Institute, Monitoring HIV Pre-Exposure Prophylaxis; Australian PrEP surveillance data does not record women’s sexual orientation (i.e. heterosexual, plurisexual, lesbian) or sexual practices (i.e. women who have sex with men, women who have sex with women, women who have sex with men and women), nor distinguish between cisgender and transgender women.

5 Ahmed, Queer Phenomenology.

6 Ibid., 6.

7 Ibid., 157.

8 Lajoie “Being at Home;” McNulty Being Betwixt and Between; Vaughan “Exploring Disorientation & Disability.”

9 Harbin et al., “Discomfort, Judgement, and Health.”

10 Wasson, “Before Narrative.”

11 Manlik, “Allies or At-Risk Subjects?”; Logie and Gibson, “Queer Women and Violence”; and Dworkin, “Who Is Epidemiologically Fathomable.”

12 Richardson, “Social Construction of Immunity,” 43.

13 Kirby Institute, “National HIV/AIDS Case Reporting,” 96–99.

14 Ibid., 50.

15 King et al., Annual Surveillance Report; Stevens, “Lesbians and HIV”; and Logie and Gibson, “Queer Women and Violence.”

16 For example, see Sabantini et al., “Kaposi’s Sarcoma”; Marmor et al., “Possible Female-to-Female Transmission”; and Monzon and Capellan, “Female-to-Female Transmission of HIV.”

17 Dworkin, “Who Is Epidemiologically Fathomable.”

18 Ibid.; Logie and Gibson, “Queer Women and Violence,” 33.

19 Logie and Gibson, “Queer Women and Violence.”

20 Ahmed, Queer Phenomenology, 8.

21 Ibid., 2.

22 Ibid., 21.

23 Tack, “The Logic of Life,” 51.

24 Ahmed, Cultural Politics of Emotion, 145; Butler cited in Ahmed, Queer Phenomenology, 174.

25 Müller, “Beyond ‘Invisibility’”; Logie et al., “‘We Don’t Exist’”; and Matebeni et al., “South African Lesbians’ Experiences.”

26 Ahmed, Queer Phenomenology, 158.

27 Ibid.

28 Müller, “Beyond ‘Invisibility’.”

29 Logie and Gibson, “Queer Women and Violence.”

30 Ibid., 33; one example of these violences is “curative rape” (i.e. when a person is raped in an attempt to “cure” them of their – real or perceived – divergence from heterosexuality). For a more extended discussion of sexual violence and HIV, see Logie and Gibson, “Queer Women and Violence”; Lenke and Piehl, “Women Who Have Sex.”

31 Dworkin, “Who Is Epidemiologically Fathomable.”

32 Logie and Gibson, “Queer Women and Violence,” 32.

33 Samuels, “Six Ways of Looking”; Shildrick “Living On.”

34 For example, Frank, “Health Stories as Connectors”; Wasson, “Before Narrative,” 107; Shildrick, “Living On”; Miller, “Is This Recovery?”; and La Cour and Poletti, “Graphic Medicine’s Possible Futures.”

35 Strawson, “Against Narrativity”; Mackenzie and Poltera, “Narrative Integration, Fragmented Selves.”

36 Woods, “Rethinking “Patient Testimony”; Hall and Rossmanith, “Imposed Stories.”

37 Gilmore, “Agency Without Mastery”; Wasson, “Before Narrative.”

38 Wasson, “Before Narrative.”

39 Ibid., 107; see also Shildrick “Living On.”

40 Wasson, “Before Narrative.”

41 Ibid., 107; Ibid., 108.

42 Frank, The Wounded Storyteller.

43 Ibid.

44 Ibid.

45 Ibid., 99.

46 The title is (in part) a reference to Billie Holiday’s 1939 song “Strange Fruit,” which calls attention to the historic lynching of Black people in the United States. The song is, Leonard (quoted in Blume, “Zoe Leonard Interviewed” n.p.) explains, “[a]bout loss and violence.” Although, she clarifies, the title of her installation is “also a pun – ‘fruit’ meaning ‘fag’” (Leonard quoted in Blume, “Zoe Leonard Interviewed,” n.p.).

47 Leonard quoted in Blume, “Zoe Leonard Interviewed,” n.p.

48 Ibid.; Frank, The Wounded Storyteller, 99.

49 Leonard quoted in Blume, “Zoe Leonard Interviewed,” n.p.

50 Leonard reproduced in Quabeck, “Intent in the Making;” Quabeck, “Intent in the Making.”

51 Leonard quoted in Blume, “Zoe Leonard Interviewed,” n.p.

52 Leonard reproduced in Quabeck, “Intent in the Making.

53 Ibid.

54 Ibid.

55 Leonard quoted in Blume, “Zoe Leonard Interviewed,” n.p.

56 Frank, The Wounded Storyteller, 110.

57 Wasson, “Before Narrative,” 108.

58 Frank, The Wounded Storyteller, 97.

59 Wasson, “Before Narrative.”

60 Diedrich, Treatments.

61 Wasson, “Before Narrative,” 109.

62 Ibid.

63 Harbin et al., “Discomfort, Judgement, and Health.”

64 Ibid., 152.

65 Wasson, “Before Narrative,” 106, 109.

66 Bacchi and Bonham, “Poststructural Interview Analysis.”

67 Ibid., 113.

68 Ibid., 118.

69 Ibid., 113; Ibid., 115.

70 Bacchi and Goodwin, Poststructural Policy Analysis, 23.

71 Diedrich, Treatments, xviii.

72 Wasson, “Before Narrative”; Diedrich, Treatments.

73 Diedrich, Treatments, xviii.

74 Bacchi and Bonham, “Poststructural Interview Analysis,” 5.

75 Diedrich, Treatments; see also Ahmed, Queer Phenomenology.

76 Diedrich, Treatments.

77 Ahmed, Queer Phenomenology, 16; 80.

78 Ibid., 158.

79 Ibid.

80 Ibid., 56.

81 Ibid.

82 Wasson, Sara and Sharon Ruston, “Translating Chronic Pain.”

83 Logie, “(Where) Do Queer Women”; Schulman quoted in Thistlethwaite, “154 Polly Thistlethwaite,” 30; and Richters and Clayton, “The Practical and Symbolic.”

84 Vähäpassi, “An Imaginative Geography,” 30.

85 Ahmed, Queer Phenomenology, 141.

86 Vähäpassi, “An Imaginative Geography,” 30; Ahmed, Queer Phenomenology, 111.

87 Ahmed, “A Phenomenology of Whiteness,” 161.

88 Ahmed, Queer Phenomenology, 139.