Memory and experience with children and young people living with HIV/AIDS: an autoethnographic essay

ABSTRACT

We submitted a theoretical essay supporting the proposal of autoethnography as a method of dialogue with the anthropology of emotions. From the autoethnographic-based narrative practice, we highlight the importance of the bond and the place of one of the investigators in the lives of these youngsters. The autoethnographic accounts of the investigators are found at the base, emerging from a 20-year work experience with children and adolescents, now young adults living with HIV/AIDS. The memories, experiences, feelings, and messages recently received by WhatsApp underpin the exercise of reflexiveness. Autoethnography is, most of all, an ethical option based on ethnographic reflexiveness, which allows us to revisit care, relationships, and practice from a critical and reflexive perspective.

KEYWORDS
Memory; Empathy; Anthropology cultural; Adolescent; Acquired Immunodeficiency Syndrome

RESUMO

Apresenta-se um ensaio teórico, sustentando a proposta da autoetnografia como método no diálogo com a antropologia das emoções. A partir do exercício narrativo, de base autoetnográfica, destaca-se a importância do vínculo e do lugar ocupado por uma das pesquisadoras na vida desses jovens. Na base, encontram-se os relatos autoetnográficos das pesquisadoras, destacados a partir da experiência de 20 anos de trabalho com crianças e adolescentes, hoje jovens que convivem com HIV/Aids. As memórias, as experiências, os sentimentos e as mensagens recentemente recebidas por WhatsApp compõem o alicerce para o exercício de reflexividade. Como base de reflexividade etnográfica, a autoetnografia é uma escolha, sobretudo ética, que permite revisitar o campo do cuidado, relações e prática em perspectiva crítica e reflexiva.

PALAVRAS-CHAVE
Memória; Empatia; Antropologia cultural; Adolescente; Síndrome de Imunodeficiência Adquirida

Introduction

I miss seeing that light on and seeing you in there, so beautiful, waiting for us to question you.

Dandara, WhatsApp group message August 2021 (age 25).

By starting this essay with an epigraph – a statement from a young woman under a fictitious name – we wish to shed light on a ‘memorial’ relationship. In other words, Dandara is one of the hundreds of young people, boys and girls, whose first author of this article had the opportunity to assist as a psychologist and researcher from 2000 to 2020 in a public hospital in Rio de Janeiro. However, Dandara may support other experiences, which facilitates the narrative construction embedded in the reflexivity required to produce critical and analytical knowledge. It conjures a memory of care, in which the scene is remembering the room that the first author no longer occupies today but which is still reviewed/revisited, translated into the message. Dandara remembers and ‘memorizes the first author’ and offers her a nostalgic message through contacts on social networks, which this epigraph condenses.

Readers of this essay will be able to ask about the place of the second author, with the first, in their memories and experiences. In this sense, the answer is not limited to a formal function of those who guide and share writing but refers to joint authorship, an exercise of triangulating experiences and enhancing reflexivity when intimacy with the study universe becomes an intrinsic component. The second author also followed some ‘Dandaras’ as a psychologist and researcher at another reference institution for the care of children and adolescents with HIV/AIDS. In other words, here, the experiences intersect, blurring the characters on purpose in order not to seek an illusion of truth, person, or cases to be explored. Such location of the authors aligns with what Bourdieu¹ highlights as the reflected reflexivity that analyzes the researcher’s place in her location in the field of knowledge production. That said, the highlight of this essay lies in the importance of the bond and the first author’s place in the lives of these young people based on the self-ethnographic narrative exercise shared and constructed with the second author.

Therefore, here lies an exercise in producing secondary narratives as a testimony of experience-and-fiction-anchored memories, modulated by the exercise of reflexivity. It is not a matter of taking ownership of other people’s stories but considering how they become their own, appropriated memories, which in the past were not debated by the place of those who were in the position of listening, researching, and providing care as health professionals. We assumed, therefore, a narrative exercise based on autoethnography in this essay. Narrative activity is an art that places the narrator in a hybrid alchemy with the narrated fact because, in this craft, the narrator’s experiences intertwine and waltz with the narrated person’s experiences². “The narrator is the figure in which the righteous meets himself”^{2 (1936)}.

Taking the exercise of reflexivity in constructing secondary narratives seriously produces exteriority; in other words, physically distant from the experience, it still resonates as something of perception, experience, and intimacy. However, the secondary narrative resuming these raw memories – and initiates an external dialogue with them – allows us to assume its feature of experience, where, as Larrosa³ reminds us, encounter, collectivization, and sharing are at stake. That is why we move away from the ‘personal’ experience and the individualized sensorial perception. Valuing experiences from the first author’s memories, making word concepts, secondary constructions, because they are reflected and reflexively criticized, which means not disregarding the intentionality of affections and recognizing the legitimacy of pain and confrontations of these young people. The amalgamation of these memories – in which the first author finds herself – produces qualified evidence⁴, which represents the shared writing of this essay, in the encounter with what was the raw material of this work for years.

Memory has a specific duration but no claim to an accurate word, like a still picture. Memory provides versions of a story that one wants to tell, register, and make a public testimony⁵ or not. In other words, interpretations about what was lived are produced. If what was lived, the experience⁶, is the primary level, the interpretation in returning to the memories is the secondary level, permeated by emotions, reflexivity, criticism, and analysis. Truth is not unique; given human complexity, there are multiple ways of interpreting people’s statements and accounts⁷. As Lubbs^{7 (271)} emphasizes, “human beings interpret both reality and science”.

Before proceeding with the argument and objective that will support this essay, we will analyze three instigating movements in Dandara’s message, which became an epigraph: 1) the first refers to longing; 2) the second refers to the recognition of ‘beauty’ as aesthetics; 3) and the third relates to the action of the verb ‘we interrogated’. The emotional expressions of longing and beauty are not incompatible with this idea that there was a ‘we interrogated’ in the encounter, an exercise of the ‘us’ that conjures reciprocity but cannot rule out a possible ‘interrogation’. It is worth pointing out to the reader that a psychologist is popularly the professional authorized to access secrets, in a mix of a confessor, interrogator, or intimacy penetrator. The ‘psychology room’ socially represents the professional authority to ‘interrogate’ and ‘harbor’ emotions with authority over the secret. An asymmetry resides in this authority and the gaps in the encounter between the ‘beautiful’ white, middle-class psychologist and the black, suburban, vertically mother-to-child infected girl, orphaned by AIDS, who grew up in history with her experience of being treated for HIV/AIDS. The memory is of the girl, now 25 years old.

The emotions mainstreamed in this memory benefit from a dialogue with Rezende and Coelho⁸ and Víctora and Coelho⁹ when revisiting theoretical perspectives on the Anthropology of Emotions. However, Coelho¹⁰ will make us dialogue with narrativity, experience, memory, emotion, and knowledge in the place of emotions in fieldwork and as a way of accessing the understanding of the other, and with autoethnography as a method in this essay.

We start from the argument that emotions hold an essential space in the production of anthropological knowledge, relying on the secondary interpretation of care memories and experiences under an autoethnographic exercise. In this case, the research field is the reflexivity of the authors, in the craft of revisited memories and experiences, in this exercise of remembrance often triggered by WhatsApp messages. This relational reflexivity exercise, temporally distant from the scenes and time in which the meetings occurred, requires a careful partnership with theoretical inputs and study and orientation meetings from the author. It does not happen alone, in a vacuum, or as a ‘non-work’. However, it requires work on oneself, folds of experience with memories, to place the emerging implications and emotions at center stage in a movement that preserves the yesteryear characters – children, young people, families, professionals – from new triggers.

From this angle, this fabric harbors the concern of producing knowledge, whose raw material is everything filed in diaries, notebooks, photos of group activities, outings and festivities, case summaries, and journals with a focus on youth activism and specialized care for adolescents living with HIV/AIDS, in which some young people or the first author participated, and vintage reports, which composed work material with young people. Such material was assembled and carefully archived like a preserved memorial field, offering a cemented experience. This yesteryear field ‘is not’ but instead ‘stands’ as support for reflexivity-based reinterpretations.

These memorial archives were relational and intersubjectively constructed. Thus, they are dated and not concerned with ‘meeting a truth’. However, they are assumed as a return to another moment to reinterpret it with other theoretical tools, supporting the exercise of reflexivity and triangulating authorship. The first author’s current position is not that of a psychologist in assistance and care but that of a master’s student, a researcher, returning to her memories and experiences in an autoethnographic exercise.

The present article aims to produce a dialogue with the Anthropology of Emotions under a theoretical essay, articulating the first author’s experience and memories in the care and research with children and adolescents living with HIV/AIDS for 20 years, ending in March 2020, in dialogue with the second author. The population that inhabits the authors’ memories appears as that of the working, suburban social classes, with a predominance of blacks and browns. We are talking here about the passage between the 1990s and 2000s. We also have an objective associated with this first one, which concerns valuing that memories, experiences, feelings, and the repository of diaries and messages received after physically leaving the field of care, also support reflexivity in the autoethnographic reports highlighted by the authors from their experiences of many years of work with these children, now young people living with HIV/AIDS.

At this specific point, we highlight that, after 20 years of care and research in the service, relationships with children and adolescents of yesteryear – now young people and adults – remained in virtual exchange platforms, such as on Facebook pages, in messages on a group that these young people built and invited the first author or private WhatsApp messages. Finally, less as an objective and more as an operation, this essay aims to produce a synchronic dialogue with an ongoing research craft whose method aims to build knowledge based on the care and research produced with children, adolescents, and young people living with HIV/AIDS and their institutional reference circles (family, healthcare, and friendship).

Therefore, this theoretical essay is based on the meeting of memories, diaries, and notes of the years of care to children and adolescents who today are young people living with HIV/ AIDS, and the exercise of remembering this trajectory, built and established with the young people, conjured with each personal trigger or shared in the WhatsApp group. The essay should “elaborate the relationship between experience and subjectivity, and experience and plurality”^{6 (31)}. A meeting with the second author occurs while exercising exteriority and reflexivity to revive the quality of the narratives as a construction of testimony, in which memories become a legitimate object for critical and reflexive knowledge.

The place of emotions in the context of memory and experience

We take memories and experiences seriously as a field as we trigger emotions in the autoethnographic context. The researcher puts herself into question in this field but not in an encapsulated process; however, with the lens of interaction, symbolisms cannot rule out resorting to the anthropology of emotions¹⁰. With this theoretical dialogue, we operate with the reflexivity of knowledge and understanding of our place in relationships of alterity in producing interpretations and analyses.

When writing about emotions, we should be clear about what we mean by them and pay attention to how we write them so as not to transform them into limiters, referring to an encapsulated individualism¹¹. Writing from memories and emotions calls us toward responsibility so that this does not mean erasing the different social locations held, but a possibility of bringing reflexivity as this game of analysis, criticism, location of who speaks and writes, dialoguing with concepts and interpretations.

In their articles, Gomes and Menezes¹² and Magnani¹³ consider emotions in ethnographic studies from a new perspective that questions the previously postulated rigidity to validate ethnography. It is necessary to assume that anthropology where the researcher is far away or neutral is impossible. As Magnani¹³ highlights, one should be “up close and from within”^{13 (11)}, exercising the possibilities of making proximity and familiarity another critical resource in this dynamic. The “standing or being from within”^{12 (1)} of the researched universes is not an obstacle to ethnographic research but one more element in cultivating reflexivity.

In the early days of anthropology history, emotions were only accepted in private, almost confessional writings, sealed from any relationship with the findings and discussions, to ensure a scientific nature, à la the positivist model of science. However, the anthropology of emotions reaffirms the evidence of the researcher’s emotions, breaking with the image of science’s aseptic neutrality or a confessional attitude. Researchers are individuals referred to the field of humanities. They can exercise a critical reflexive perspective on affections, emotions, and affectations.

Dialoguing with Coelho¹⁰ and Gomes and Menezes¹², no thought or production is dissociated from emotion. In other words, emotion and reason are articulated with what is understood by embodied thoughts. One has to feel to understand so that writing materializes. Reflexive writing can be an investigative method⁷ under this rationale. As a result, one stimulates the articulation of thought and emotions, reflecting on places, powers, and privileges, on who we are in the stage, relationship, and place we stand, including the place of authority over the production of knowledge and interventions in care stages. These places traverse the authors of this essay and drive them ever closer to this theoretical field in rationality-sensitivity attrition.

There is no automatism in the encounters and analyses underpinning social and anthropological research. Mobilizing emotions, affections, and feelings is a methodological path that gathers, mixes, and incorporates data and ethnographic findings with the researcher’s biography. At this crossroads, we understand the emotional experience of the other. Recognizing the researcher’s feelings during fieldwork and knowledge production becomes an acquisition in the autoethnographic exercise. Thus, in anthropology, emotions can assume their spaces in public texts, which was once intended and accepted only in private texts, such as diaries¹⁰.

“The feeling [appears] as that which paves the way for understanding the other”^{10 (282)}, to think of the researcher with his human dimensions, considering the crossings and productions, in this friction with the other in his humanities.

Favret-Saada¹⁴ highlights emotions within anthropological research based on the researcher’s ability to be affected when interacting with and accessing the experience of the other. She believes that the research based on the thoughtful examination of the researcher’s emotions occurs in three stages: when he lets himself be affected when the experience is narrated and later in the analysis. The author argues that experience, narrative, and analysis do not overlap.

The expression of emotions can continue in the exercise of literary narratives without this implying reducing the text and analyses to the researcher’s subjective reality. How we bring emotion into the context of memories and experience is grounded on a standing knowledge, considering the intersubjectiv-ity of being affected and allowing affection, bringing about a situated experience⁸.

Anthropological emotion is always situated and represented as a social element. Analyzing it, we access the culture and how social relationships are structured. Emotions also organize public and private spaces and stress individuation and belonging⁸.

A methodology that considers emotions as a way of knowing and accessing vulnerable populations or sensitive topics from standing knowledge unravels borderlines for new ways of doing research and narrating – besides being powerful for thinking about inclusion and exclusion still identified in the experiences screened in this essay about young people living with HIV/AIDS.

Coelho^{10 (286)} addresses nostalgia as “anthropology’s driving force”, offering the possibility of recovering something circumscribed in our memory. The author argues that the double of nostalgia is hope because we think and indicate a prospect when we dwell on past experiences. It is also a way of preserving and keeping alive something that is on the verge of disappearing to recoup and recover something often restricted to the field of imagination.

Returning to the first reference to Dandara brought in the epigraph that conjures longing, read here as nostalgia, we should reflect and question the validity and ethical dimensions of summoning/inviting these young people with whom bonds were once established, in another stage of experiences and memories, to a place that will never exist again. This reflection appears here because, at a specific moment in the construction of a master’s education, the first and second authors realize that doing research can mean placing the researcher as the source of production of collections for research, returning to her experience, with guidance and study provocations, organization of physical collections and memories, such as current notes from a past field. Thus, it is assumed not to reinforce or even trigger a hope of returning to a relationship that can no longer be established as children and young people previously experienced it assisted in service and participating in research conducted and ended.

Dialoguing with Coelho¹⁰ in what she calls method nostalgia, we question how the activation of memories and experiences established with these young people for so many years is subjected to continuous ethical reflexivity. Nostalgia for the method can generate an unrealistic expectation of going back to something that has ended: in this case, from this essay’s role – conferring the possibility of recovering/accessing what was circumscribed in the sphere of something qualified as ‘personal memories’ – of attributing legitimacy, through an autoethnographic effort, which assumes one’s own, the ‘personal’ as an object.

Ethically considering anthropological nostalgia within the method in social research with vulnerable populations, or when approaching delicate subjects, is not erasing the power relationships permeating the relationships between researcher and researched, but ensuring that these relationships do not produce oppression in non-hegemonic relational ethics¹⁵. In summary, how can one legitimize knowledge whose raw material is the memories recorded in the diaries and files of a health professional becoming a researcher? How to make this exercise also be an ethical commitment not to trigger young people to have new conversations with someone who will no longer be the ‘pretty psychologist in the room interrogating’? How to reaffirm that care memories revisited a posteriori with theoretical, methodological, and conceptual reflexivity can generate secondary knowledge?

Possible tentative answers are assumed here in the next section when discussing autoethnography as a method to gather memory and experience, embedded in the previous discussion on the anthropology of emotions.

A methodology to dialogue with memory and experience: the autoethnographic proposal

We return here to Dandara’s expression ‘we interrogated’ in the article’s epigraph. The emotions at stake in the clinical care scene refer to the asymmetric positions between the psychologist and her patient in a setting where one cannot fail to consider what is possibly at stake in the care of an adolescent living with HIV/AIDS. Reception is not dissociated from an exercise of investigating, questioning, managing, and obtaining news about self-care, and self-control, in which the exercise of sexuality and adolescence build their doubles, suffer from the demands of robust social structures, in which stigma, discrimination, requirements, and regulations operate. As this framework was also research at the time, we need to assume that an ‘interrogation’s seasoning’ in the questions to be answered to a protocol was also there.

At this point, Bourdieu¹ reminds us that all research – whether with qualitative or quantitative methods – must be understood within “social interactions under the pressure of social structures”^{1 (694)}. The difference between economic, cultural, and symbolic materials between researchers and researched needs to be considered to prevent a violent approach. Moreover, with Ayres¹⁶, we should remember that language, as instance, can narrow or enhance the distance between health professionals and the subjects assisted and between researchers and researched.

Following Larrosa³, the narrator’s role is an exercise in critical reflection on the choice of words that will give meaning to experiences and previous care memories. The chosen words hint at the mechanisms of subjectivation, the construction of realities, and the production of meaning from this embodied experience built with young people and their kinship relationships.

Valuing the contributions of Tanabe¹⁷ and Moreira¹⁸, that every text has something fictional, we found Favret-Saada¹⁴, relativizing the idea that the informants’ statements in research, the speeches, and accounts are unshakable truths while seeking to value a living collection of memories that do not need to ‘belong to others’, standing as research participants. This is because these others are and were in scenes of the principal author of this essay. At that moment, she did not place her experience as an object but linked ‘to the others’ – qualified as those living with HIV/ AIDS – the status of participants or prominent figures of the experience.

The lived and incarnated experience is in the memory of those who once ‘interrogated’ and is now the one questioned through reflexivity and exteriority with an interlocutor who provokes it as the second author of the essay. The embodied experience is a way of being in the world and addressing reality⁶. W e should note that bonds with formerly children and adolescents, who are now young people, persist in the virtual spaces of the WhatsApp group that organized and included the first author, and in the Facebook and Instagram profiles. In other words, the duration of bonds of affection and contact is facilitated by the mediation of virtual social networks.

We should resort to a question that made us assume the legitimacy of the memories of those who researched and cared for, in a first-person perspective: what are the ‘supposed truths’ contained in the statements, the answers to the interviews, the participant observations of a field, or the ethnographic observations in current scenes, which cannot nest in the memories of those whom today allow themselves to revive, reflect, and produce knowledge about them?

Subverting the logic of truth, we understand it here as sand running through our fingers, moving, reshaping itself, and paving the way for the new. We propose shifting from the positivist view of science, which considers statements and their products from a dualistic perspective, thinking from a “political and critical perspective”^{3 (19)}.

We assume communication, interpretation, and analysis from the ambiguities of what is located in the field of affection¹⁴ from an anthropological perspective of affection and suffering. My guiding argument “is how to transform the history of the other as part of the common experience?”¹⁹. We started by answering what motivates, affects, and is at stake in the choice to return to young people who were assisted during 20 years of a previous experience. Those memorialized children and adolescents generate a material collection – of archives of events, newspaper clippings, reflexive diaries on practices – exuberant, unworked, and which can be revisited, this without attributing the same feelings of ‘interrogations’ to these young people of today.

Thinking about an autoethnography of collections of memories and experiences can allow, as Benjamin² inspires us, the distance and proximity of what is observed, influencing what is seen, which in the unreflected daily life prevents the approximation-distancing game, limiting what can be observed. Experience, as a vital fluid, is established in the interiority of relationships and affections³. The construction of experience and memory takes time, contemplation, and return and requires bending. Larossa^{3 (21–25)} affirms that the experience represents:

[...] the possibility that something happens to us, or touches us, requires a gesture of interruption, which is almost impossible these days: it requires stopping to think, look, listen, thinking slower, looking slower, and listening slower, lingering over details, suspending opinions, judgment, will, automated action, and cultivating attention is a delicacy.

The invitation made by Larrosa³ to suspend automated action and allow oneself time and space can serve as a connection to consider the memory gathered in personal archives, notes, and memories, and a meeting place to be revisited from another perspective. This is precisely where we resort to autoethnography as a method and exercise to value previous, decanted, and revisited experiences.

Santos²⁰ describes autoethnography as a methodology that taps from the source of ethnography but proposes to build a report from a place of belonging, culturally situated, where reflexivity has a fundamental role for the evaluation of contents in the intersubjective relationship between researcher and researched; between researcher and his memories, in the production of literary texts, in which biographical experiences are a relevant resource to transform past experience into an object of study. As a method, “it recognizes and involves the researcher’s subjectivity, emotion, and perspective on the investigation”^{20 (224)}. Autoethnography is a method and can also be a technique for producing data in research with qualitative analysis and the very research product.

Based on Santos’ diagram^{20 (219)}, autoethnography is balanced in a triad, with ethnography, methodological orientation, and content analysis, analyzed considering intersubjective reflexivity to think about the researcher and content in autobiographical content, where the interpretation should consider the cultural and social aspects. Thus, autoethnography has a “political and transformative nature”^{20 (219)}, considering that it is not limited to producing narratives but to their critical analysis.

Tilley-Lubbs⁷ talks about critical self-ethnography, which combines self-ethnography with critical pedagogy that helps the researcher to reflect and recognize their social location and privileges in encountering the emotions of the group they are studying, avoiding the perpetuation of an oppressive approach.

Reed-Danahay²¹ indicates the importance of anthropological reflexivity in self-ethnography. This powerful method allows the researcher to reflect on the power relations in the social relationships reflected in the research and engender social analysis and criticism.

Valuing and including the researcher’s feelings and affections in the findings, analyses, and criticisms impacts and influences academic writing, which no longer removes emotions but brings them to the core of what is observed. Autoethnography allows writing that resembles, uses, or approaches the forms of literary writing, bringing academic writings closer to the general population, expanding the boundaries and scope of research findings, overflowing beyond the formal academic walls. Autoethnography realigns the researcher, moving from the exteriority to the core of the research²².

According to Favret-Saada¹⁴, this separation between researcher and research subject, between ‘us and them’, as she refers to it, would serve as a precaution against “object contamination”^{14 (157)}. Is this methodological hygienism possible, or would this idea stand on a false illusion that, in qualitative research, this division would cross the moment of data collection and remain until data interpretation? This would disregard that all communication is permeated by what is affected, by a “quantum of affection”^{14 (159)} that selects what should be said and what should remain hidden.

We propose a look at the object in the link, the relationship, intersection, and hybridity, in the production of knowledge from shared experiences and memories, considering that experience is intersubjective and that new constructions of meaning are elaborated²³ in this fusion of what is collective and particular of each one.

Reflecting on possible and pertinent criticisms, we maintain with Santos²⁰ that “all ethnography is an autoethnography insofar as it reveals personal investments, interpretations, and analyses”^{20 (221)}. Critical self-ethnography⁷ allows for examining the researcher’s practice.

Dialoguing with Cooper and Lilyea²⁴, autoethnography is a qualitative research method that allows the researcher to observe himself in an exercise of reflexivity and, with that, provides an opportunity to rethink and review his experiences. Besides being a method, it reflects our way of being in the world, “[...] Autoethnography is not something we do apart from who we are, how we relate to the world, and reflect on our lives”^{24 (206)}.

Autoethnography can reflexively trigger memories and build experience as a field, assuming its empirical and ethical validity in producing qualified knowledge.

Fragments of messages in the connection between past and present: some presence

The epigraph arrives as a message sent on the WhatsApp group of which the first author is part with some of these young people. In orientation meetings, this message turned into an epigraph was subjected to a provocation about the validity of preserving the initial object, in which these young people would be submitted to a new research protocol: with invitations to interviews in closed rooms and a recorder on the table, in the space where they were once addressed as service users or questionnaire respondents. It was possible to think about how much returning to the hospital they attended, now making it a new field of research, would not feed an illusion of resuming a clinical scene, generating a pernicious fantasy of ‘reactivating the room today with the lights off’, into a commitment no longer achievable.

Dandara’s statement is not naïve. It does not reveal a difficulty with the formal norms of the Portuguese language. “... The light on for us to interrogate” suggests an ambiguity of who interrogates whom. From the power relationships circulating in this network of relationships, where being there, actively questioning, and extracting information based on the veracity expected by science, can also mean being available to be questioned and reveal truths that science may hide. Alternatively, even in this hybridity, being part of this intersubjective construction of living, coexisting, and surviving living with HIV/AIDS; or even in this teeter-totter, in this alternate position and circulation of affections and investments in care or not.

This message, highlighted by the epigraph, emerges two years after the end of the clinical scene, in which children, adults, pregnant women, and young people living with HIV/AIDS were the focus of clinical care and research. Memories of other messages currently received in private WhatsApp or even shared in that same app in a group are added to this message in the epigraph:

Every time I go to the hospital, I sit in the waiting room and stare down the hall, thinking that you will show up any moment. I keep waiting for you to turn the hall, wearing that lab coat, and call me. That’s pretty crazy. (Valter, 47 years old. Statement to the first author, on a day of remote care, via WhatsApp video call, which occurred on the same day as the medical appointment).

The statement of this man, whose appointments were remote after the first author left the hospital, makes us reflect that it is not about re-establishing a therapeutic relationship but about the place that the therapeutic scene establishes and the memories of an experience interconnecting time and space. It is what is lost, what is broken, and what is put on hold when the one who shared the responsibility for care belonged to the direct health team, and this care is now organized externally.

I’m here waiting to be seen by you, Doctor. Too bad without you here. I remember you constantly. I hope everything is all right and we get back to doing our analysis. (Enzo, 49 years old, in a private WhatsApp message to the first author).

Good evening! I’m at the hospital to receive care, and I remembered you... in fact, I have remembered you several times... the time when I could have enjoyed your company and teachings more. I’m missing our therapies. I hope all is well with you. (Enzo, 49 years old, in a private WhatsApp message to the first author).

Hi, how are you? I’ve had two deep feelings... I regret not having made the most of our analyses because you were the most appropriate person I’ve met. I am longing to set our syntony. Honestly, I want to send a letter, text ... anything to your department asking you to come back because your patients sorely miss you. (Enzo, 49 years old, in a private WhatsApp message to the first author).

These messages were addressed at three different stages, with a one-year gap between the first and the last. Despite being sent by an adult man, it reveals more than an established transference relationship. He was offered the continuity of remote care after the first message, outside the hospital space. However, contrary to what he reiterates in the messages about the desire to return to ‘our analyses’, he disappeared when this new place was proposed. Thus, more than the therapeutic relationship, spatial materiality ensures the security of permanence of life and stability from meeting at the place of care.

What draws attention is the expression he used when referring to the therapeutic process as ‘our therapies’, in the relational character built in the clinic, where the first author of this essay is located as a witness. It refers to a dialogue with Favret-Saada¹⁴ on the possibility of therapeutic efficacy based on the “work conducted on unrepresented affection”^{14 (155)}.

I was going through several adult situations [laughing]. It was really crazy! So, I thought, I’m going to look for ‘x’ [first author], but there was no time. (Solana, 26, private WhatsApp message).

What is seropositive? Is it when you were born? With the virus, right? (Plínio, 28, private WhatsApp message).

Good morning. Last night I dreamed of you. (Antonia, 28, private audio message via WhatsApp).

Hi – [followed by the photo of the old service room with the door closed and the lights off, followed by the message:] It’s sad to see this empty room. (João, 32, private WhatsApp message).

Good morning. Can you tell me if the hospital has PrEP treatment? I had intercourse today with a condom, but the condom tore, and we didn’t see that. (João, 22, WhatsApp private message).

Now, there’s a smile I miss. (Verônica, 35, private message reacting to the first author’s WhatsApp photo change).

Good afternoon. I got your number from João. I needed to talk to you. (Camila, 28, in a private WhatsApp message).

I know you are no longer part of the hospital, but I urgently need a psychologist for my daughter and me. (Lúcia, 29, in a private WhatsApp message).

Actions like these make us reflect on the extent to which returning to the hospital as a field, no longer in the place of care, but for developing research or assuming the role of a researcher who ‘interrogates’, can feed back a relationship that was then restricted to being part of from WhatsApp group. In proximity and physical distance, this field still demarcates the memories of presence for them. A duration and control of the place once occupied by a psychologist/ researcher and now is the memory of the first author of before.

Is it worth asking what place the first author of today would occupy in this unequal relationship between researcher and research subjects, in this gathering with young people living with HIV/AIDS, sustained by the perspective of responsibility? For whom does it make sense to return to this field?

Establishing a field of research where countless and vast encounters have been woven over 20 years, in which the past presence was the identity of the health professional and researcher, seems, at this moment, inadequate. Continuing with Diniz¹⁹, reflecting on how to research sensitive themes, we should consider our responsibility towards the field and people.

These messages were received in the space of digital sociability. They lit a warning signal for the validity and relevance of a possible face-to-face return these days for another survey. Considering that the triggering of painful memories reactivates an authority in research, an asymmetry of power can characterize a predatory relationship.

Reactivating these young people, with whom a close relationship still lasts, can reinforce this asymmetry of powers in the privileged position in social and cultural capital; and, in gratitude for this provisional return, perhaps out of affection and generosity, they accepted this selfless position as informants, in which affection may not be represented. In this artisanal weaving, a narrative that reactivates the memories of past and present experiences becomes a secondary narrative through narrative reinterpretation.

With Diniz¹⁹, we assume that, in the face of experiences, the strength of testimony revives the dignity of transforming memories into secondary narratives situated culturally, socially, and historically. Conjuring Larrosa^{3 (26–28)}, “this knowledge of experience in the relationship between knowledge and human life [produces] difference, heterogeneity, and plurality”.

Returning to questioning the truth of testimonies in secondary narratives, as Diniz¹⁹ points out – and as Velho²⁵ deconstructs the idea of an impartial and neutral researcher – it is not appropriate to talk about neutrality, as there is no affection-free narrative. The commitment is with the reliability of the provocations raised; thus, the orientation is returning to the first author’s writings, notes, diaries, and memories in an exercise of reflexivity. Larrosa³ affirms that what matters are the “meanings and senselessness” in the knowledge of experience and not an ideal of truth.

As Diniz¹⁹ inspires us, “to become a narrator is to become a qualified witness”. In the case of the present essay, assuming oneself as a qualified witness means connecting autoethnography to its narrative expression.

Final considerations

Choosing the autoethnographic method considers the researchers’ place of belonging in the experiences of HIV/AIDS. However, it necessarily needs to be submitted to the exercise of non-hegemonic ethical reflexivity, analyzing what is personal and political. As every experience is situated, the autoethnographic method must be thought of historically, reflecting the culture, the social, economic, political context, and social relationships.

The use of memories and past experiences – in research preceded by own, authorial, and dense collection – preserves people who were and still are highly active in research.

Critical autoethnography produces secondary narratives while assuming its political, critical, and transformative nature by presuming that the researcher, with his memories and documented sources, has a collection worthy of review and mobilization.

• Financial support: non-existent

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Publication Dates

• Publication in this collection
  20 Mar 2023
• Date of issue
  Dec 2022

History

• Received
  25 Apr 2022
• Accepted
  14 Sept 2022