Up from the archive: On stigma,resilience and chosen families. Hassan Khalil thinks with Bernard Gardiner 2018 *

Abstract

This paper reflects upon Bernard Gardiner's qualitative study of the lived experiences of older gay people living with human immunodeficiency virus (PLHIV) in regional Queensland. The study explores how advancements in the biomedical field have extended the life expectancy of PLHIV, allowing this group to navigate through persistent challenges both psychosocial and structural. Central to Gardiner's study is the exploration of stigma, trauma and financial challenges. The core strength of the study is its participant-led narrative which offered valuable insight into complex lived experiences of ageing PLHIV. Gardiner's findings remain relevant in the contemporary and current context, highlighting the need for social justice and policy attention. The present article reflects on the potential of probing intersectional experiences among culturally and linguistically diverse and gender-diverse communities to extend Gardiner's work. Finally, it argues for the inclusion of chosen families and support networks as a radical form of social, emotional and practical care for PLHIV.

Introduction

The human immunodeficiency virus (HIV) was first discovered in 1981. Since the HIV epidemic in the United States among homosexual gay men and intravenous drug users, the negative image and the social response that came in its wake have persisted over the decades and continue to have an impact on the lived experiences of the people living with HIV (PLHIV) that go beyond biological and medical impacts. The choice of vocabulary has a substantial impact on the framing of perceptions and impressions, which is why PLHIV have been critical of the use of language and take an active role in shaping the discourse (Dilmitis et al., 2012). In this article, I revisit Bernard Gardiner's article ‘Grit and stigma: Gay men ageing with HIV in regional Queensland’ (Gardiner, 2018). Gardiner's research drew on 31 interviews with older gay men − the researcher highlighted that despite the medical advancement for HIV medicines, many still experience trauma, stigma and social isolation. The participants’ narratives disclosed their experiences of pre-mature ageing, financial insecurity due to years on disability support and the deep-seated feelings of invisibility within the healthcare system and society. The study critically analysed the prevailing discourse of biomedical models, which equate viral suppression rate with overall well-being, emphasising that such narratives risk erasing the ongoing issues and struggles of those ageing with HIV. Finally, Gardiner called for a more inclusive and nuanced approach to HIV care that will address mental health, and social determinants of health and stigma, especially as this population enters later life with complex care needs. While Gardiner's study is published within the last decade and, as such, presents a contemporary approach to studying PLHIV and their life experiences, I want to reflect on how Gardiner's recommendations can be furthered in research, drawing on my own doctoral work.

‘Chosen families:’ expanding support networks

Contemporary scholarship on HIV and aging reveals that support networks, specifically ‘chosen families,’ serve as a critical survival infrastructure instead of older gay men with HIV simply preferring social connection. Scholars in the social sciences have extended the definition of family beyond biological ties, referring to such structures as ‘alternative families’ (Muraco, 2006), ‘fictive kin’ (Hwahng et al., 2019) and ‘chosen families’ (Weston, 1991). The provenance of the term ‘chosen family’ in social science discourse stems from anthropologist Kath Weston’s work (Weston, 1991), highlighting the central role that close friends play in the lives of sexual minorities who often experience distance or rejection from their families of origin. Gates (2017) defines ‘chosen families’ as ‘non-biological kinship bonds, whether legally recognised or not, deliberately chosen for mutual support and love, based on mutual or shared lived experiences.’ Recent scholarship has increasingly recognised the importance of chosen families in lesbian, gay, bisexual, transgender, queer/questioning, intersex, asexual/aromantic and other identities (LGBTQIA +) communities, examining how they are formed, maintained and serve as sources of emotional and social support (Hwahng et al., 2019; Muraco, 2006). Studies have highlighted how chosen families provide queer individuals with a sense of belonging, stability and care, particularly in response to biological family rejection or threats such as honour-based violence (Levitt et al., 2015). For queer and transgender young adults, these networks become necessary for health, illness, and the mutual provision of care (Abramovich and Shelton, 2017). Specifically focusing on PLHIV, Knauer characterises chosen families as key support networks that close voids created through missing biological support and insufficient formal help (Knauer, 2016: 312), especially for ageing PLHIV who have experienced decades of family rejection as well as social ostracism and institutional marginalisation. However, despite growing attention to this concept, no research has specifically examined how the chosen families or support network function within the experiences of LGBTQIA + PLHIV.

From social stigma to social support: The role of social connections in ageing with HIV

Human immunodeficiency virus has been widely recognised as a catalyst for dialogue about stigma, discrimination and human rights. Overall, the stigma around HIV reflects the undervalued status that society attributes to PLHIV, evident in adverse opinions, thoughts and attitudes (Ziersch et al., 2020). As with Gardiner's (2018) work, scholars before and after (Lazarus et al., 2016; Mikołajczak et al., 2021) have demanded that HIV care and social justice extend beyond simply clinical and medical care. This level of care is needed to improve the social lives of PLHIV (Mikołajczak et al., 2021). Previously, many scholars have demanded a tailored and holistic model of HIV care which better addresses the medical aspects and complex psycho-social challenges experienced by PLHIV (Bilardi et al., 2019; Lazarus et al., 2016; Mikołajczak et al., 2021).

Stigma needs to be explored in this context as multidimensional, not limited to sexual orientation, locale, age, or socio-economic position. For example, an ageing HIV positive gay man living in rural Queensland might face discrimination and/or social exclusion due to his HIV positive status, his sexual orientation and his age, while his potentially limited financial resources or dependence on disability pension could add to his social isolation. Altogether this discrimination will have a lasting impact on his psychosocial well-being. We must also note that stigma can be ‘anticipated’ and ‘internalised,’ as discussed by Erving Goffman (1963). Goffman distinguished three broad types of stigmas, each of which is related to HIV, for example: ‘physical imperfections;’ ‘blemishes of individual character;’ and ‘tribal stigma of race, nation, and religion’ (e.g., members of negatively viewed social groups) (Goffman, 1963: 77). Moreover, stigma has been explained as a kind of (social) death (Parker & Aggleton, 2003). Non-stigmatised people tend to purposely avoid those who are stigmatised, practise social rejection and treat stigmatised individuals as if they never existed or are invisible, or in other words socially dead. The shame of stigma affects PLHIV's chances of: access to adequate healthcare; social inclusion; creating and maintaining support networks; and fulfilling engagement. This is why the findings of Gardiner's (2018) study will remain significant and can continue to provide a foundation for research on stigma.

According to Bilardi et al. (2019) HIV positive transmission and diagnosis can be marked as elements of fear, shock, isolation and despair. Hence, this diagnosis can push the individuals to social isolation, which also negatively impacts their psychological well-being and results in low self-esteem; all of which are at the core of Gardiner's (2018) study. However, it would be worthwhile to also engage and acknowledge support networks in the light of Bilardi et al.’s (2019) findings. They note that individuals who are identified as having HIV and have any PLHIV in their social networks would be better able to regulate and adjust to the positive diagnosis than those who have nobody to talk to. Likewise, Power et al. (2019) established that lack of social connection among PLHIV is strongly connected with negative quality of life. In the studies on PLHIV, stigma and psychosocial aspects in the absence of social networks, chosen families or queer kinship, peer support and programmes have proven to be a key finding by scholars over the last decade (Bilardi et al., 2019; Power et al. 2019). Peer workers help PLHIV navigate stigma, medical, social, emotional and psychological challenges (Mikołajczak et al., 2021) and act as a bridge between PLHIV and healthcare systems (Ogier et al., 2020). Overall, I argue that Gardiner makes a rich contribution, but to most holistically address the effects and remedies of stigma, a greater focus on chosen families and peer-care could be added to extend his discussion. This is the focus of my own research.

The central theme of this reflection is trauma and stigma, which is not limited to the individuals who are diagnosed with HIV, but it haunts an entire generation. The people in this demographic endured loss of loved ones, death, exclusion and continued social and political neglect. This generation was identified by Halkitis et al. (2013) as ‘the AIDS Generation,’ collectively distressed by years and years of cultural warfare on social, medical and political fronts. Gardiner's (2018) study is a sober reminder that relative success in the treatment of HIV should not silence the complicated stories of survival of this ageing and marginalised demographic, still relevant in current times. Ogier et al. (2020) explain that we must acknowledge HIV's particularity to comprehend the clutches of stigma fully and celebrate the grit and perseverance of ageing PLHIV.

Advancing Gardiners research design and theoretical understanding

Gardiner's (2018) study was qualitative in design; based on semi-structured interviews with the participants and thematic analysis, which comprehensively captured the personal stories and the changes that occurred with time. It also added a temporal dimension to our understanding of the experiences of PLHIV as his research design recorded how the observed aspects, such as psychosocial well-being, coping mechanisms and social connections, change with time and in response to changes in the outlook and environment, such as defunding of the service and/or policy shifts. This echoes with my own research goals as repeated interactions with the interviewees shed light on changes in their social structures, queer support and chosen families, and support systems, which highlights how the social stigma for PLHIV remains relevant until now. The study provided valuable individual narratives and took an empathetic approach towards PLHIV. However, like all studies, it has some limitations, which I will discuss here.

First and foremost, there is little to no attention afforded to gender diversity and intersectionality. The study assumes that all participants are White or are treated as if they were White. It thereby ignores the plight of HIV positive homosexual men of colour, ‘aubergine’ men, or those who have migrant backgrounds and face many complications, including systemic neglect and social stigma. Including a culturally and linguistically diverse (CALD) population could offer insights into how support networks function across different cultural contexts and how, even across distance, transnational support can still play a meaningful role to support PLHIV. In addition to people of colour, gender diversity could also be enriched. Transgender and fluid gender people living with HIV face even more layered challenges, particularly in regional areas. To understand the multi-faceted nature of stigma, which is spread out across social, cultural, institutional and personal dimensions, it would be worth examining such experiences through the lens of intersectionality. Intersectionality, as conceptualised by Kimberlé Crenshaw in 1989, will offer a framework to understand the multi-layered nature of social identities and stigmas and will be particularly valuable to understand how participants with diverse backgrounds in terms of both ethnicity/race and gender identity experience support and stigma (Crenshaw, 2013). In the context of PLHIV, these individualities do not exist in isolation, but their identities intersect in ways that can intensify marginalisation and compound stigma. For instance, a queer migrant living with HIV may face unique challenges that differ significantly from those of a cisgender heterosexual person with the same diagnosis. The intersection of cultural displacement, racial or ethnic discrimination, gender diverse identities and HIV-related stigma may create additional barriers to accessing support and maintaining social well-being. Enlisting these voices in future studies would augment our grasp of the marginalisation of these communities.

As sexual health gains traction as a human rights issue globally, researchers argue for policies that reflect the intersecting vulnerabilities these populations face, be it racism, xenophobia, homophobia, or institutional exclusion. It is time for a policy that brings all LGBTQIA + under one umbrella: to offer an inclusive strategy rather than studying their experiences individually. Hence, applying an intersectional lens will allow future researchers to move beyond one-dimensional analyses and instead capture the complexity of lived experiences, particularly within CALD communities. It will also help to identify structural inequalities embedded in health systems, social policies and service delivery. Ultimately, intersectionality may enrich future studies by acknowledging the layered realities of individuals’ identities and ensuring that support mechanisms are inclusive, relevant and responsive to the diverse needs of PLHIV. It is significant to acknowledge that no single study can capture the full range of intersecting experiences; therefore, these recommendations are intended for future research across different regions and communities to present more inclusive policy and practices.

Future research can also reach beyond the geographies of Gardiner's (2018) foundational study: Queensland, Australia. My doctoral research works with PLHIV and the stigma that goes with it across international borders, dictated by trauma that occurred in the countries of origin and its resurfacing through institutional controls in Australia. Adding to an ongoing conversation, a transnational queer perspective can further illustrate how HIV stigma and care interact with immigration policy, racial profiling, surveillance and post-colonial healthcare.

Finally, an analysis of PLHIV experiences from the perspective of social support would benefit from a methodological approach such as person-centred social network analysis (PSNA), rooted in British anthropological work of the 1940s (McCarty et al., 2019). PSNA within sociology examines the relational structures among individuals, groups, or organisations to uncover patterns that shape social dynamics, information flow, power relations and collective behaviours within a social system (O’Malley & Marsden, 2008). It provides a detailed exploration of relational ties, interactions and the structural characteristics of personal networks (Djomba & Zaletel-Kragelj, 2016). It would be valuable to study the degree of dependence each person living with HIV has on their support networks, making a distinction between those who have supportive networks and those who have none, which is the core of PSNA.

Concluding remarks

Bernard Gardiner’s essay ‘Grit and stigma Gay men ageing with HIV in regional Queensland’ (Gardiner, 2018) is a vital contribution to the sociology of HIV, ageing and queer life in rural Australia. It illuminated aspects of queer people living with HIV that advances in the biomedical sphere have inadvertently obscured, that is, trauma, isolation and invisibility, and the resilience of those living on despite these challenges. From a personal standpoint, as a queer researcher working closely with LGBTQ + refugees and asylum-seeking people living with HIV, the article is inspiring as well as thought provoking.

This current article serves as a reminder that social suffering and ostracisation are not the fault of the individual but of the failure of social systems and lack of structural empathy. It moves us to reorient to not just medical and clinical services but also to a more extensive support programme that includes emotional, relational and political components. Such programmes also strengthen the status of chosen families and queer kinship as a place of love, resilience and survival. On my road to my doctoral research, Gardiner's study will serve me as a roadmap and a mirror: guiding the way towards an inclusive, socially connected, and just understanding of the ageing population of PLHIV in Australia. As such, Gardiner's study has set a course for future studies in the field to follow, both in terms of approach and spirit.