“It does take a toll on you”: The role of affect in shaping archivists’ encounters with records about the HIV/AIDS epidemic

Overview

Twenty-five people from 20 different archives answered our initial emails. These individuals completed the demographic survey and participated in our interviews. Though we intended to conduct all interviews individually, in practice, we had two instances where participants chose to be interviewed in groups. P4 and P5, and P18–22 respectively. The demographic survey allowed participants to choose whether to disclose information about their gender identity, sexual orientation, and race or ethnicity: 12 participants reported on their gender identity: 6 men, 5 women, 1 self-described as queer; 11 disclosed their sexual orientation: 6 heterosexual or straight, 3 gay, 2 queer; and 10 specified their race or ethnicity: 8 white, 1 Latinx, and 1 Jewish. On average, participants had been working in archives for 21 years, with the most experienced one having been in the profession for 50 years. Our participants covered a broad geographic cross-section of archives in the United States: the Northwest, the Midwest, the Southeast, and the Southwest. For a full description of participants’ demographics, see Wagner, Martell, and Oltmann (2024: 150–151). It is worth noting that our study was conducted roughly 25 years after the end of the “epidemic time” (Gill-Peterson, 2013). In this period, societal perceptions and attitudes toward AIDS and LGBTQIA+ communities have shifted, and this difference likely influenced participants’ responses.

Question 1: Affective experiences

Our participants talked about their affective experiences in documenting the HIV/AIDS epidemic in terms of inspiring and burdening feelings. They mentioned multiple burdensome feelings associated with their exposure to records of people who died of AIDS. They expressed sadness and grief (P4, P7, P12, P14, P15), to the point of tearing up (P12, P17) at times.

Some participants explained that certain records were challenging to process (P5, P9, P10) because they contained “a lot of tragedy” (P5). For example, P10 spoke about a time when he processed a collection from an important member of their local community, which included letters and mementos of several friends who had died. The donor kept the materials in the order in which each friend had passed. In one box, P10 found a rolodex with the cards of all the donors’ deceased friends. In P10s words:

It was really heavy to process this collection. That was like oh my God, just . . . And I ended up making the decision to, like he had put things in this folder as they happened, so as people died. And I made the decision, this is how this needs to be maintained, is in that order, the order in which he experienced it. And it was tough. It was really heavy to work on this. (P10)

P10’s experience illustrates how processing these records became, at times, emotionally exhausting (P5, P10). Nevertheless, like P10, other participants persisted in their work because they recognized the importance of long-term preservation of the information, painful as the experience of processing was.

P14 and P16 remembered having met some community collaborators in their respective archives who had since died. Thinking about these P16 reported experiencing a “second wave of loss” that they felt was directly linked to the AIDS epidemic, even if those who had passed had died years after retroviral treatments became available and from other causes:

I mean, I don’t know if it’s what- it might just be growing awareness on my part. It might be the, I mean, it’s almost been 10 years since I started interning, but I feel this thing. Then maybe COVID. I do kind of feel like there have been a number of folks that I’ve worked with at [name of archive] who have died since I’ve started. There is kind of this generation of long-term survivors who didn’t die in the 80s and 90s but who are now kind of reaching the end of their lives. And there’s also the friends and families and lovers of the people who died in the 80s and 90s also. There’s kind of this second, it feels like there’s kind of a second wave of loss happening right now. (P16)

This second loss speaks to the current persistence of AIDS in the so-called “endemic time” (1997–present; Gill-Peterson, 2013), whereby people from marginalized communities continue to experience HIV/AIDS as urgent (Cifor, 2022). In P16’s case, this experience is an echo from the HIV/AIDS pandemic that reverberates in the context of COVID-19. Looking back is further motivated by the passing of multiple members of the HIV/AIDS survivors’ generation passing away. In addition, P16’s sense of loss was heightened by P16′s daily contact with HIV/AIDS records.

Like P16, P17 felt “pretty intense and emotional” after processing personal records from such individuals. Even long after the passing of some donors, some archivists recalled crying either when processing oral history records of HIV patients (P12) or donors’ photographs (P17):

Well, yeah, I mean, I can’t talk about [DONORS]’s photographs without crying. The stories that I learned from these folks are absolutely, totally heart-rending. I mean, the archives aren’t supposed to be safe places, but they’re, you know, places for tough things and tough conversations. (P17)

Interestingly, some community members offloaded their negative feelings about their late loved ones onto archivists, as explained to us by P9 and P16. These relatives of deceased HIV patients experienced panic at the prospect of having the records of their loved ones preserved:

There’s no way to know the amount of journals and photos and letters and T-shirts and memorabilia that have been lost simply because of a lack of understanding and a panic around a pandemic. (P9)

This venting of anger and frustration represented some relatives’ desire not to have certain histories preserved. P16 reasoned that this frustration may come from the shame that many families experienced about having relatives dying of HIV/AIDS. This result is consistent with prior research about the stigmas experienced by people who live with HIV/AIDS and their families (Hutchinson and Dhairyawan, 2018; Ma et al., 2019; Robinson et al., 2023; Vincent et al., 2017).

In tandem with the burdensome experiences, our participants also talked extensively about inspiring feelings that stemmed from their engagement with HIV/AIDS records and the communities affected by the disease. Confidence arose from the opportunity to learn about the experience of a segment of the LGIBTQIA+ community that some archivists (P1) had not previously engaged in, a feeling that others articulated as pride and privilege (P4, P12):

The other thing is a sense of privilege and pride, like the fact that we get to work with these things and provide care to this community, including the community members in our community who have died. And you know, like, just so much before their time. I’m glad that we are able to honor their lives. (P4)

The latter feelings originated in the recognition that archivists are in a unique position to preserve and honor the memories of community members who died prematurely, thus providing relevant information to others. Some archivists expressed awe (P8, P23) and astonishment (P15) at the opportunity to preserve the stories of HIV/AIDS activists, which may otherwise be lost. For example, P15 remembered how he and a colleague were both astonished by the resilience of the people whose records they were documenting:

Back when I was working on that exhibit, the graphic designer that I was working with, once I gave him all the materials, and he’s a gay man, was similarly sort of moved, and that it was specifically was on 50 years of activism in [this city], so the AIDS epidemic was a big part of it, and all kinds of other activism, and [this city] has a wild history with non-discrimination ordinances and things. But I remember giving him the script and the images of objects to turn into a beautiful exhibit and his sort of astonishment and joy at the resiliency of you know, what these communities have been through and fought for. (P15)

For our participants, some HIV/AIDS-related records are evidence of the courage, heart, and soul that activists in the 1980s and 1990s demonstrated when advocating for people who lived with HIV/AIDS in a context of societal condemnation against the LGBTQIA+ community (P8). Our participants expressed admiration for the courage of the people whose stories are held within the archives, stories that speak not just of individual, but communal resilience (P9, P14):

The stories of our sadness, and the stories of our grief, and the stories of our pain are what have been required of us to be either accepted or acceptable. If it’s not HIV, it’s queer trauma. So people are requiring us to share our pain constantly. But as both an archivist and a queer person, I look at these collections and all I see is a template for better community making. (P9)

P9’s statement highlights how the communal resilience found in HIV/AIDS records challenges dominant narratives of queer people as victims. In this sense, positive affect is not just a tool of individual coping, but a communal act of resistance. Like P9, others reflected on the inspiring character of the activists whose records they stewarded (P2, P14, P15). To them, these records were not only collections of death, but also joy because the collections contained powerful narratives of people who loved and protected life. Because of this, some participants felt at times not just empathetic toward individuals who lived with HIV/AIDS (P2, P14), but also empowered by their stories, as P14 explained:

When you’re reading stories of, they’re coming out and how painful it is, or, you know, just to kind of read in there, those are hard, but it’s also you know, you also see the stories of hope and resistance, which are really empowering. (P14)

While most inspiring feelings referred to our participants’ archival encounters, P17 recalled their experience as connection, though they used the term “camaraderie,” while working with others in collecting HIV/AIDS-related materials. This experience echoed what the first and second authors experienced during their group interviews with P3–4, and P18–22, respectively. In both cases, the authors noticed how participants reminisced together, at times nodding or smiling at each other, about their shared experiences with their respective collections. This result signals the role of communal care as a means of navigating adverse affective experiences. We reflect on the significance of this topic in our discussion.

Question 2: Navigating affective experiences

As we learned about participants’ affective experiences, we also sought to understand their strategies to navigate their thoughts and feelings stemming from their archival encounters. Twelve participants responded to this set of questions. All responses referred to navigating burdensome feelings only. This result may be partly explained by the phrasing of our questions, which could have prompted our participants to focus on negative experiences (e.g. “How did you handle those thoughts and feelings? For instance, did you go to therapy, talk to someone, or feel the need to do so, or take a break from work?”).

Archivists’ strategies to cope with burdensome feelings can be divided into two segments: individual and relational. Individual strategies included emotional distancing from the material (P16, P23). For P16, this consisted of a mental reframing, telling themself that “this is research” (P16). Other participants talked about walking outside for fresh air (P1), going to therapy (P3, P4), and taking breaks (P10). For example, as P3 described their strategies to be an approachable supervisor for archivists who may be feeling challenged by the records, they also recognized that individuals working with HIV/AIDS records may at times feel burdened:

[I] acknowledge that it’s, it is emotional labor, it is hard, it does take a toll on you as you do this work. And that you can’t sort of separate yourself from, from those emotions, that it’s just, it’s just part of it. (P3)

Relational strategies were ways in which participants engaged with others to process their feelings, such as talking to their spouses (P1, P4), discussing their feelings with friends (P4), and sharing their feelings about archival materials with other stakeholders. P12 gave an example of this when they explained that talking to board members from a community association allowed them not only to convince said board members to donate their records but also to share their feelings about those materials:

[Community outreach], it’s so local, so much of it, and it’s so relationship driven, it’s amazing. We went down in their nasty basement and looked the organizational records over, and you know, there were photographs, there were things related to the outreach work that this group [did]. We went and spoke to their board and told them what it meant for us to take their archives. So, the archive technically belongs again to [the record creator]. But it’s in the care and the keeping of [the university where the interviewee works]. (P12)

Importantly, there was a set of strategies that were relational and were not limited to our participants’ initiative. Instead, some participants reported that some relational strategies were explicit policies in their archives to support staff with the challenges of their work. These included attending sessions about trauma-informed archiving (P5), mutual check-ins among archivists (P9), and inquiring about and respecting staff’s emotional needs (P5). P5 also noticed that they had received “no objections” (P5) from supervisors to engage in individual and relational strategies of care, which they interpreted as “passive support.” By contrast, P1 and P2, while acknowledging feelings of sadness and isolation, did not report these issues to their colleagues and chose instead to navigate their feelings independently.

In sum, our results show that participants’ awareness of the context of structural injustice surrounding the AIDS epidemic motivated them to engage in documentation work. Our interviewees stressed how traditional archival practices enabled them to preserve records that would have otherwise been lost. The activities that our participants mentioned were collecting records, building community, recording oral histories, and other documentation strategies. Perceiving this work as a privilege, some participants expressed an array of uplifting feelings, such as gratitude and awe at having the opportunity to preserve HIV/AIDS-related records, while also acknowledging moments of sadness, grief, and burnout.

Theoretical implications

Our work expands ongoing research about the role of affect in shaping archival encounters and other areas in information science. First, we show how the affective experiences of practicing archivists were both burdensome and uplifting. Their affective experiences are important meaning-making devices that permeate their community-engaged archival work.

Prior work has already studied the role of affect in archival encounters among archival subjects (Caswell, 2014) and users (Agostinho, 2019; Simmonds, 2019). Our work describes the role of affect among archivists. Archivists documenting the HIV/AIDS epidemic experienced, at times, burdensome feelings and coped by deriving meaning from that history. Many experienced themselves as directly implicated in the history of the HIV/AIDS epidemic, including the few archivists who self-described as straight. By being able to document a lesser-known aspect of recent U.S. history, about a community to which many of them also belonged, participants experienced a sense of fulfillment. This phenomenon is consistent with prior work on the role of meaning-making of complex affective experiences during life transitions (Allard and Caidi, 2018; Genuis and Bronstein, 2017; Huttunen and Kortelainen, 2021). Thus, our results demonstrate that documenting health crises, like the HIV/AIDS epidemic, is an additional context in which meaning-making allows individuals to cope in a time of crisis.

Archivists’ experiences of documenting as an inspiration allowed them to partially alleviate the burdening dimension of their work. This finding correlates with prior work in personal information management about the impact of positive affect in enhancing life skills (Fiese and Wamboldt, 2003). Many queer individuals face additional hurdles to managing their personal information, which they perceive as a burden (Cushing and Kerrigan, 2022). However, positive affects can enhance a person’s ability to manage their information (Alon and Nachmias, 2023; Atoy et al., 2020), as well as practicing self-care and community engagement (Bell, 2011; Birdi et al., 2009).

In our case, the life skills developed through documenting the epidemic were not just self-care but community-engaged archival work. This result correlates with Cifor’s (2022) archival ethnography about the role of mobilizing nostalgia to engage critically with the history of AIDS, and bringing attention to the urgency and unabating present impact of the virus among marginalized populations, such as black and Latinx communities. We believe that developing strategies to cope with negative affect has positive real-life consequences for archivists. The strategies they used to cope were both individual (e.g. going for a walk, taking breaks) and relational (e.g. talking to a friend, doing more activist work). Similarly, our findings focus on the affective impact of the individuals leveraging the tools and practices of what Cifor calls “vital nostalgia” (2022). Specifically, we believe that the notion of AIDS documentation as inspiration holds a prefigurative potential that motivates and sustains activist archiving despite its tolls.

Our observation about individual and relational strategies of care also expands the research about affect in archives (Bassnett, 2009; Cifor, 2015, 2022; Greer, 2022; Latimer, 2013; Russell, 2018) by highlighting the need to provide support for archivists who document trauma and crises. When documenting the HIV/AIDS epidemic, queer archives function as funnels. Archivists are tasked with appraising, describing, and enabling access numerous documents filled with information about the feelings of shock, sadness, and grief experienced by the LGBTQIA+ community, which invariably bears an impact. When burdened by these negative affects, our participants often chose to take care of themselves by taking time off; informally talking to friends, relatives, or other colleagues, among other actions. Collectively, some of our participants chose to hold periodic team check-ins, and some in positions of management asked their team members about their affective needs. Though such relational strategies of care were the least common, they were meaningful. Studies about meaning-making during life transitions have shown that individuals are more effective in developing coherent narratives out of their difficulties through interactions with peers (Jia et al., 2024) A similar phenomenon was found among U.S. military veterans, some of whom were able to document intimate aspects of their time of service thanks to the documentation work of their spouses and mothers (Martell and Benoit, 2024). Furthermore, relational strategies of care point to the need to not only provide services and tools to individual archivists but also to the need of the archival profession to engage in collective action to alleviate the structural conditions that made the epidemic so damaging for queer people and other marginalized groups (Cifor, 2022).

Praxis-based implications

Importantly, we found that institutional policies to provide care were few and far between. This result is significant considering the impact of processing records about individuals who lived with HIV/AIDS. Many of these individuals died while collaborating with archivists. We believe this result reveals a silent afterlife of the structural injustices that the queer community faced while the HIV/AIDS epidemic raged in the 1980s and 1990s. Specifically, archivists are individually finding ways to cope with the negative feelings that stem from their work, while most institutions currently lack policies of support tailored to archivists’ affective needs.

This finding should not be misconstrued as an indictment of managers or archival institutions. The awareness about the risks of burdensome emotions linked to archival encounters is relatively new. Strategies of support for archivists are still in their infancy. In addition, the lack of institutional support reported by archivists working in LGBTQIA+ archives may resemble other types of archival institutions. Furthermore, two of our participants chose to navigate their emotions independently rather than requesting institutional support. Whether such choices are informed by the specific context of their work environments is beyond the scope of our study. Finally, while most archivists did not report institutional policies to address their affective experiences, two of our participants reported accessing therapy through the health insurance provided by their institutions. All these factors suggest that the absence of institutional policies regarding negative affective experiences is not necessarily a product of institutional neglect. Our data is insufficient to make claims related to the links between managerial strategies in archives and archivists’ affective experiences.

Limitations

We acknowledge that there are limitations to our study. For instance, given the diversity in terms of depth across the seven topics covered in our interview protocol, archivists’ affective experiences are explored in most but not all interviews. Furthermore, when inquiring about archivists’ coping mechanisms, we did not ask them whether they had health insurance. This is important because some participants may have benefited from therapy, psychiatric medications, or other resources that most employers offer. Unless we asked for this information directly, we cannot be sure whether participants deemed such resources as institutional support to cope with the burdens of their work. As a result, there may be some coping mechanisms that our participants engaged with but did not report.

In addition, our selection of interviews as our data collection method allowed us to expand the number of institutions reached to multiple archival institutions across the United States. This came at a cost. Given our larger number of archival institutions involved, we have reached a greater degree of external validity relative to prior work (Cifor, 2022) which focused on a smaller set of archival institutions in New York City. However, our findings allow for a more limited analytic depth since we are relying on self-reports. Follow-up studies could rely on multi-sited archival ethnography to gain a similar level of diversity of experiences while also allowing for triangulation between self-reports, observed behavior, and documentary evidence.

Furthermore, our demographic survey did not cover questions about the position our participants held within their archives. Therefore, our results do not differentiate between rank-and-file members of the archival organizations represented in this study and mid-level managers, nor between volunteers and paid staff. Consequently, we are unable to gauge how our participants’ positionality within the organizational hierarchy impacted their archival encounters and the strategies to navigate their affective experiences.

Related to the previous point, we are only able to name and characterize the affective experiences of our participants and the strategies they used to manage those experiences. However, given the exploratory and descriptive nature of our study, we cannot assess the impact of such affects on archivists’ sense of well-being and effectiveness in performing their tasks. Instead, we can only say that our participants experienced affects that impacted their lives.