Self-care, against all odds: a care-based perspective (2015)

Self-care, against all odds: a care-based perspective

Raison publique, no. 20, 2015.

We will attempt to examine the harmful and unexpected effects of prevention and medical discourses aimed at getting a population to take care of itself. In a community where attention to the risk of contamination has been raised to the highest level—the gay community in the face of AIDS—contradictions have emerged over the course of the epidemic’s history, both in the discourses and in the consequences of those discourses: barebacking, slam, Ipergay. In our view, bearing witness to a genuine “self-care,” these 234characteristic phenomena in the evolution of this epidemic within this community give us the opportunity to approach particular configurations of risk, its mutations, and their consequences for our interpretation of the reactions induced by risk when it is taken—or designated—as something to be avoided. Although seemingly opposed, barebacking, slam and Ipergay allow us, in light of current clinical practice, to consider a version of care as a subversion of the inevitable in a situation of health disaster and viral vulnerability.

VIRAL INEQUALITY AND PRAGMATISM

Thirty years after the beginning of the AIDS epidemic, is the notion of health catastrophe still valid for describing the current epidemiological situation? It is impossible to address this question without defining—and therefore restricting—the scope of the AIDS epidemic we are talking about, because since 1983 it must be acknowledged that several epidemics have been underway, each with its own characteristics and populations: drug users, gays, women, women from sub-Saharan Africa, white heterosexuals, trans people, etc. There is certainly no longer, in France, an epidemic situation comparable to the years 1983–1996, during which a hecatomb occurred. But have we emerged from the disaster? And who is this “we”? 5

For while the situation has clearly improved greatly overall, can we say the same of more specific situations—for trans people, for example, for people who inject drugs intravenously, for young heterosexuals, or for gays? The Bulletin Epidémiologique Hebdoma-daire (BEH), produced by INVS, reports on this in detail every 1st December, on the occasion of World6 AIDS Day. Thus, everyone can know that the drug-using population, so severely affected at the beginning of the AIDS epidemic, has seen a clear improvement in its situation and has even achieved the most significant progress, compared with other populations. These improvements continue to exist for HIV, but not for hepatitis C. With HCV, injectors continue to face major difficulties and the level of contamination remains very high. As the hepatitis C virus is a thousand times more infectious than the AIDS virus, harm-reduction measures related to injection have remained 7 partly insufficient. This physiological fact constitutes a real inequality between viruses and the hosts they can colonise in order to multiply. This is reflected in practices. Injection by

intravenous route is far riskier than vaginal penetration, for example: a viral inequality 8 exists between injectors and non-injecting heterosexuals with regard to the hepatitis C virus. Faced with the risk of hepatitis C, injectors are in a particularly vulnerable situation compared with non-injecting heterosexuals. Other vulnerabilities of this kind exist, particularly with regard to HIV. This is the case for gays, compared with other populations such as heterosexuals in general, among whom the HIV prevalence rate reaches, in 2015, nearly 18% in Paris; the HIV incidence rate accounts for nearly 50% of new infections. Is this, once again, an inequality that physiology can explain? No. 9Although the practice of anal penetration, when received, presents a higher risk of contamination than vaginal penetration, the non-exclusivity of practices and the impossibility of knowing the practices of individuals or population groups obviously do not allow us to conclude with certainty that there is a physiological vulnerability from which gays would suffer specifically. Yet it was indeed practices that were singled out at the beginning of this century in view of the persistence of a very high level of contamination among gays, with, in the early 2000s, the adaptation of harm-reduction discourses from drug use to the sexual sphere.

Building on the encouraging results observed among drug users thanks to harm-reduction strategies for injection practices, prevention discourse on sexual risks attempted to shift both its content and its form. The AIDES association, in particular, undertook this work in 2002, with a prevention campaign aimed at gays taking risks during sexual intercourse; the approach was first carried out in the south of France before being rolled out more broadly. Physiological risks were indexed and compared on scales linking them to sexual practices. Prevention discourse was then determined primarily by practices rather than by risks themselves, in order to reach the intended audience as clearly as possible. Thus one could read “you 10fuck without a condom? at least use gel” or “without a condom, it’s even riskier to get fucked,” 11etc. The obvious aim of this approach was to acknowledge the risks being taken, admit them within prevention discourse, and propose that their impact be minimised—that damage be limited—through action on practices. In doing so, sexual HR (harm reduction) profoundly modified the logic of drug HR by giving it a turn closer to a “least-worst policy,” where historical HR had very clearly invested in a “best-possible policy.”

BAREBACK AND MEDICAL POWER

That a population previously mobilised should have relaxed its vigilance to such an extent remains an enigma that has so far elicited only unsatisfactory explanations. How could phenomena as complex as those linked to prevention in sexuality be validly explained by weariness over time, or by a reduction in anxiety thanks to therapeutic progress?

It has not yet been a matter of reading these risk-taking phenomena as responses or reactions to prevention discourse, since the latter has never truly been the object of critical thought on the part of its promoters or its audiences: its foundations are not questioned, nor are its symbolic coordinates. Yet this new strategy of prevention discourse—exporting to sexual practices the experience of harm-reduction strategy first applied to drug consumption—appeared at a highly significant moment: in 2002, precisely following a period during which bareback discourse gained an audience in France. This ideology, brief in epidemic history (around the year 2000), gave rise to a discourse that celebrated voluntary risk-taking, a loosening of prevention measures consented to with more or less clear-sightedness, without always being accompanied by claims in favour of a reinvented “pleasure without constraints.” Barebacking and 13 its discourse gave form to, and marked, a period characterised by the exhaustion of both the proponents of prevention discourse and those to whom that prevention was addressed. Public authorities, but above all prevention actors who served as the mouthpieces of this discourse, had to react to the decline in prevention habits. It was then that a more pragmatic approach emerged, inspired by the pragmatism previously adopted with drug-using populations. Not that prevention discourse had until then been tinged with an overly abstract ideology that needed to be broken with, but that, failing to understand what was happening, it was at least necessary to react, and therefore to favour measures with concrete application or tangible appearance. Almost no one considered that this relaxation of prevention among gays—particularly illustrated by bareback, but not only—could signify and materialise a liberation, a distancing, or an emancipation from prevention discourse, which remains a public discourse—funded by the State, no less.

drug use, emerged at a very significant moment: in 2002, precisely following a period when the bareback discourse gained traction in France. This ideology, brief in epidemic history (around the 2000s), gave rise to a discourse advocating voluntary risk-taking, and the loosening of prevention measures, consented to with varying degrees of foresight, without always being accompanied by demands for a reinvented “unfettered enjoyment.” Barebacking and 13 its discourse gave shape to and marked a period characterized by the exhaustion of those advocating prevention and those to whom this prevention was addressed. Public authorities, but especially the 14prevention actors who championed this discourse, had to react to the weakening of prevention habits. It was then that a more pragmatic approach emerged, inspired by the pragmatism previously adopted with drug-addicted populations. Not that the prevention discourse had until then been tinged with an overly abstract ideology that needed to be broken with, but rather that, failing to understand what was happening, it was necessary to at least react, and therefore prioritize concrete or tangible application measures. Almost no one considered that this relaxation of prevention among gay men, particularly illustrated in bareback, but not exclusively, could signify and materialize an emancipation, a distancing, or a liberation from the prevention discourse, which remains a public discourse—furthermore, funded by the state.

The notorious author Guillaume Dustan, who claimed his voluntary risk-taking as part of 15a project to liberate sexuality constrained by prevention discourse, attracted a great deal of attention, but was never read as an indirect interpreter of the prevention discourses of the time and of the behavioural and social phenomena visible among gays in that period. Yet what he said and wrote is quite simple. After two decades of official discourse on collective and individual protection, a movement of independence—even if dangerous—imposed itself on him and on others. Not out of love of provocation, which he otherwise cherished, but, according to him, to regain choice: the choice to protect oneself or not to protect oneself, against the obligation of protection. How better to say that it was an individual, subjective necessity, finally recovered, after too long a period of pain and constraints conceded to the collective, to the community, to prevention discourse, to the State—which, let us recall, had only recently recognised the legality of homosexual relations, and already found itself wanting to interfere in gay sexuality with good intentions in matters of health. Freedom, barely acquired and so quickly 16 spoiled by the epidemic, was reconquered, notably through bareback, at the first opportunity: around 1998, with the turning point represented by the emergence of multi-therapies.

This did not prevent Dustan and others from dying very young, because the physiological history of the virus does not align with subjective history and its necessities. Psychoanalysts—among others—know this, but the State and its mouthpieces did not see it that way, intensifying efforts in favour of a pragmatic, non-subjective, yet individualistic approach to sexual behaviours and risk-taking. There is a subtle and decisive nuance here to which we will return, because prevention discourse has sunk further into its congenital deafness, refusing paternity for these phenomena of escape.

The years that followed saw the development of biomedical approaches to prevention, up to the integration of curative therapeutic tools into the preventive arsenal. The molecules that treat HIV acquired by an organism are considered as a means to prevent its establishment in an HIV-negative subject during

a risk-taking episode. This is called PrEP: pre-exposure prophylaxis; in France the therapeutic trial is called “Ipergay” and provides access to the drug Truvada®, taken before risk-taking and 18 afterwards according to a specific protocol. Medical scientific tools came to reinforce prevention, and its discourse has, of course, transformed once again, as these paradigm shifts have unfolded. Our aim is not to assess the merits of these strategies; that would be a futile undertaking: these strategies are being implemented and observed, that is all. What is more interesting lies in the shadow of these new developments illustrating an AIDS epidemic 2.0, as Lestrade and Pialoux have described it. During the implementation of these revolutions in prevention—first in the United States, then in 19Europe somewhat later—new forms of withdrawal and marginalisation of behaviours appeared, extending and supplanting bareback.

Across the Atlantic, around the turn of the 2000s—1998, to be exact—Paul Morris founded the company Treasure Island Media (TIM) in California. It is a gay pornographic film production company 20 bareback. With its pirate logo depicting a skull and two swords, the company clearly displays its ideology and invites young actors, beginners in particular, to join the pirates’ treasure island of sex: those who do transgressive things, morally forbidden, contrary to the official prevention discourse. Risk-taking is here, once again, conceived as an escape, a liberation, as Dustan sets out in his literature—without any relationship of influence. New identifications appear: just as many pro-bareback individuals recognised themselves in Dustan’s work, TIM actors wear the company logo as a tattoo. With the support of the internet, the production and distribution of films is facilitated: young boys can become porn stars on the web, where visitors can follow their stories, their setbacks and sometimes their dramatic personal downfalls. At the very same time as prevention became highly technical and its discourse strengthened—21to the point of becoming difficult for non-specialists to access—innovations in escaping prevention also took on forms that were certainly more complex and more equipped.

SLAM AND SUBJECTIVITY

In France, particularly among HIV-positive gays, the phenomenon known as slam has emerged, which 22consists of intravenous drug use during sexual intercourse. This phenomenon does not so much illustrate a new way of moving away from HIV contamination prevention, since empirically it is accepted that this practice initially concerns, in the vast majority, HIV-positive people. However, slam bears witness to, and tells, something of the history of the epidemic and of prevention discourse. Through the ordeal it in fact represents, it explains how the attempts to escape prevention discourse in the era of bareback were transformed into forms of resistance to health discourses carried by prevention discourse, as well as into kinds of reactions to discourses on sex, also carried by prevention discourse. More than a multiplication of the risks of contamination by various viruses, infections or germs, the practice of slam has established itself as a sexual practice in its own right, capable of transforming with it the image of gay sexuality previously defined, indirectly and directly, by prevention discourse, towards new creative, transgressive horizons, free from the state-prevention-discourse-discourse-on-sex. At each stage in the flourishing of these marginalisations in the form of risk-taking, the boundaries of a world perceived as free are reconquered. All these pirates, slammers and barebackers have clearly pushed back or gone beyond, crossed limits, lines and rules. Not one of these initiatives should be excluded from an analysis that would explore these spectacular propositions as authentic responses and reactions to prevention discourse, which we generically describe as a discourse on sex, and a State discourse that interferes in matters of sex by funding it: a discourse in the service of a manifest biopower. 23

Beyond any assessment that may be made of the different prevention strategies, it is striking that these elements have never been—and still are not—considered as valuable indicators of what might be drawn from an intrinsic limit of prevention discourse, a fundamental flaw in that discourse, about which it would be necessary to finally inform oneself in order to ensure that new prevention strategies are capable of working towards well-being and improved situations, without repeatedly and morbidly encouraging these phenomena, hitherto perceived as simple faults to be resolved when they are symbols to be interpreted.

The increased viral vulnerability of gays, a cause of inequality within the gay community, constitutes a threatening health situation, as Jacques Leibowitch emphasises: the possibilities of encountering an 24 HIV-positive partner and being exposed to the virus are in no way comparable to the epidemic risks incurred by heterosexuals. Without any need to integrate other variables relating to the number of partners or sexual practices, the probabilities are high. The vulnerability induced by this viral inequality is indisputable.

In addition to this weighty argument, let us note that associations of HIV-positive people25 report that discrimination against virus carriers has never been as significant as it is today. This is due to the fact that there have never been so many HIV-positive people in good health, likely to encounter discriminatory situations in their lives, but also because of the paradoxical persistence of distrust towards HIV positivity—particularly in work or in emotional and sexual relationships—unrelated to the medical reality of current contamination risks: namely, that an HIV-positive person who is treated and has an undetectable viral load is no longer considered infectious and, as such, should no longer provoke fear.

The increased viral vulnerability of gays, a cause of inequality within the gay community, constitutes a threatening health situation, as Jacques Leibowitch emphasises: the possibilities of encountering an 24 HIV-positive partner and being exposed to the virus are in no way comparable to the epidemic risks incurred by heterosexuals. Without any need to integrate other variables relating to the number of partners or sexual practices, the probabilities are high. The vulnerability induced by this viral inequality is indisputable.

We showed, in the article mentioned above, that, since the beginning of the epidemic, 26HIV-positive people have gradually constituted a shadow community within their own community, and continue to undergo a kind of intra-community repression, even though the constitution of this sub-group quite clearly contributed to the foundations of gay community emancipation in the years 1990–2010. Like all unhappy legacies or those bearing past suffering, this one is rejected in a defensive movement. The persistence of HIV positivity within the gay community does nothing but recall the history of gay identity, erasing it even as it reinforces it through the intensity and violence of this collective history weighing on individual freedoms. Subjective expressions are constrained by this imaginary and symbolic weight. An authority is exercised over the very existence of bodies through the presence or absence of the virus, its consequences, treatment or lack thereof, rejection in love or in sex.

According to Blanchot and Nancy, the rise of a community proceeds through the eradication of the individual. 27 28In the case of the community, this process is compounded by the presence of the virus, which imposes its diktat.

Today, we are witnessing the effects of these redundancies and repetitions of the eviction of individualities in a context of unleashed biopowers: that of the disease itself, but also that of therapeutics against the disease, and that of the environment in which the disease evolves: thus of HIV-positive people, their circles, society, the gay community, doctors, and prevention actors.

BIOSUBJECTIVITY

Is it possible to take another look at the escapes and piracies we have discussed, which have been illustrated and continue to appear in what we call new sexual ethnicities? “Ethnicity” to say that we are not in the presence of a simple group, nor a community, nor a clan. But to say nonetheless that a recognition operates from a common denominator, which we propose to think is the virus as a marker of exclusion, and not only an agent of contagion and a condition of HIV positivity. These last two qualities are also the oldest forms under which we encounter the virus. Exclusion, for its part, has been present since the beginning of the epidemic, but had not until then been active in the context of a population that had potentially regained the means to recover. Among gays, these means—therapeutic and the progressive expansion of rights—did not give rise to the production or arrangement of a durable collective response oriented towards resurgence or progress.

Thus emerges the very possibility of considering the present biosubjectivity, which has not yet been produced or which was slow to emerge. Foucault, from hermeneutics to biosubjectivity via biopower, traces the perspective of the individual reappropriated by himself, enlightened about his affiliations and determinants. This is perhaps what the Ipergay project can generate beyond its therapeutic trial objectives, when it moves the individual towards a new positioning vis-à-vis his community, the collective. The possibility of prevention strengthened by medication and thus increased protection rates can only renew the relationship between a person and his 29 group of belonging, between a gay man and his community. Sexuality is thereby questioned and modified, in terms of identity and practices. This is already clinically observable for those currently participating in the trial. But does this, more profoundly, make it possible to encourage the emergence of a subjectivity capable of relying on the knowledge it has acquired about the powers that assail it—biological and bodily realities that ground it, cultural, social or political determinants that run through it—without forgetting the symbolic and imaginary influences of which it is the hostage? At present, it is still too early to answer this question. Time is needed to see whether or not signs appear announcing changes in identity and subjective paradigms among gays, within the gay community. Assuming this is possible, since we are allowed to anticipate positively, this evolution would clearly mark a further stage in gay identity reactions in a situation of health catastrophe. But will they be the fruit of the offer made by Ipergay, or the result of its diversion by its beneficiaries?

Although the objectives pursued do not seem comparable at first glance, it is already possible to think of these forthcoming new developments as a continuation of the piracies and past transgressions that were bareback and slam. The gays-Ipergays—those who will gain access to the choice, as HIV-negative individuals, to include preventive treatments in their sexual practices—are certainly engaged in exploring a subjectivity at work and in the making, from the same common point of support as bareback and slam : self-care, where the self determines subjective urgency even when it contradicts health necessities or health in the broad sense. We shall see whether this subjectivity can be described as biosubjectivity.

According to this line of thought, it would only have been necessary to let the biopower of medicine join and mingle with that of the virus for a new form of subjectivation of the epidemic and of gay identity to take shape. This is undoubtedly the case for many of those concerned. But what can we imagine of future transgressions, of piracies to come, which will in turn divert the proposals of prevention discourse on sexualities enhanced by prophylactic therapeutics? Will the health catastrophe transformed into a health disaster be reduced or contained? Or is it not rather community identity that will be further strengthened to the detriment of individualities? Finally, might the aims of preventive control have found the conditions for their civilisation and flourishing in pre-exposure treatments?

To answer these questions, we must describe what risk has become throughout this period. For both physiologically and in the imaginary, unconscious or political registers, the AIDS virus and its effects have undergone so many transformations that they are not always as localisable as one would wish. And in this brief exploration, we must question the place given to care as daily concern for one’s neighbour, on the part of those concerned among themselves—the gays, in our example—but also on the part of those who address these people—the State, caregivers, prevention actors.

CARE-BASED PERSPECTIVE

With treatment, viral load can become undetectable. In practice, HIV-positive people themselves say that they are undetectable. This ironically highlights two quite distinct aspects of the epidemic’s evolution. The quantity of virus can be low enough to no longer represent a risk of contamination. Having unprotected sex is no longer an absolute risk-taking: everything depends on viral load, and therefore on knowledge of the possible HIV positivity of one of the two partners, their possible treatment, and the proper functioning of that treatment. Thus, risk is no longer localisable as it once was, associated with stable parameters—protected/unprotected intercourse, HIV positivity/HIV negativity. This fluctuation of risk, which developed as therapeutic advances progressed and as those concerned adhered to treatment follow-up, contributed to a real mutation in the possibilities of responses and subjective reappropriations by gays of the fate that is theirs. Combined with viral inequality, which constitutes an exemplary feature of vulnerability, the instability of risk strengthens and activates the responses and reactions that are accessible and possibly created. Amid risks, the initiative taken, through its hopes, has clearly detached itself from its consequences whenever forms of piracy and transgression have been carried out, as we mentioned in the examples. Against all appearances, it has always taken the path of a paradoxical “self-care” which, if it was not centred on a health criterion stricto sensu, was quite evidently aimed at a subjective necessity—whether this was the case with bareback or whether it still is with slam or with adherence to Ipergay. This “self-care” is not a form of care; it does not directly involve care for one’s neighbour, but for oneself. That said, the secondary addressee of this self-administered care is none other than the partner or partners, who are also exposed to the same difficulties. This dimension of recognising needs—still stronger in the Ipergay project, where one individual’s action affects all the others, and vice versa—suggests a reconfigured form of benevolence, which can be seen as a version of care. Indeed, it is care because of the active address to the other: an address to the other in the movement of care that cannot fail to carry a certain dimension of the self, without which the address could not be realised.

If the dimension of care taken or considered for oneself or for the other seems less obvious in the case of bareback or slam, let us consider that the creation of a space where the anxiety that burdens sexual fulfilment is replaced by a form of liberation capable of guaranteeing—even temporarily—shared enjoyment undoubtedly proceeds from a sharing not only hoped for, but also implemented, and created. That it extends as far as the sharing of illnesses accentuates its paradoxical scope. To say that benevolence lies at the heart of bareback or slam practices is not self-evident at first glance. Yet clinical, psychoanalytic experience supports this formulation. This ambivalent version of care provided to respond to and satisfy the subjective necessities of subverting the control exercised by health and prevention discourses as biopower proceeds from an adaptation and a resistance which, even if it has found in Ipergay a respectable form, remains a potential source of reversal, transgression and surprise. The future will tell. What is clear for now is that the subjective motivations are the same, or arise from the same necessity of emancipation in the face of the pressure of so-called “bio” power that the epidemic embodies, that the virus continues to make present, in the three situations and phenomena we analyse here.

It is already certain, in view of the practices reported in our clinical experience, that Ipergay participants make use of it in a way that departs from the trial’s stated objectives, although they are not deprived of it for all that. This is an interesting point about the reception of this medical proposal: patients appropriate it. It is a biopower that comes into dialogue with the imaginary power attributed to the virus, 30from which a new production emerges—unexpected, each time singular. Its intention towards the virus intersects, in the individual, with the possibility of further progress in emancipation from the virus, in regulating one’s position vis-à-vis the collective and one’s community, in emancipation from former prevention discourses—in a word, one’s subjective necessities. The alliance, the articulation, is realised here. When Ipergay announces that it aims at prevention, the individual is free to aim at a sexuality liberated from certain constraints—though this does not mechanically make it free for all that. He takes up the medical offer as his own without needing to pursue the same objectives as that offer. Thus, emancipation can continue while being framed by a biopower that is desired or accepted, because it provides sufficient subjective satisfaction to adhere to this offer. Some call it a therapeutic alliance; we prefer “consented subjection” to emphasise the process that governs the choice, rather than the apparent health success that authorities have reason to celebrate.

So is this a biosubjectivity in Foucault’s sense? If we adhere to the use he makes of it, what would be missing in our example is clarity on the individual’s side in his analysis and acceptance of the powers that subject him—those of medicine, of course, and of prevention, but also those linked to his sexuality as a need. This clear-sightedness does not require that the individual be able to push his subjectivity so far as to free it from all constraints, since that project is deemed impossible by definition. However, in the absence of complete action, taking support from the analysis of endured powers seems, for Foucault, to engage the production of ethical principles of a personal dimension, suggesting the examination of powers down to individual needs, and not only constraints coming from outside. On this point, it is not certain that sexuality and its needs are truly questioned in what Ipergay can propose, even though they are discussed. To say what? That individual necessities encourage the individual to adhere to the associated medical and preventive approach as a single whole? The answer is written into the very name—Ipergay, one must hear it—so to speak, the debate is closed and the fundamental questions are pushed aside as soon as an offer of Ipergay-sexuality is announced. Physiological pragmatism is not a friend of critique, even if it does not prevent it at all; it certainly does not encourage it. That said, gays will very certainly protect themselves from infection thanks to medication. This is already the case. But what will become of these pending questions that have been sidelined in discussions since the beginning of the epidemic? Will they become problematic when they resurface by rebound or through other collective adaptations using additional technical means to come, and other individual creations that will bring their forms of responses and reactions guided by other concerns?

CONCLUSION

Taking care of oneself is already a form of care, but it can be achieved a contrario to the self that interests philosophy or psychoanalysis, when the unconscious and existence are set aside as determinants of individual decision under collective pressure. Subjective necessities encourage, in every sense, adaptations that bring about more than notable emancipation, liberation, and enfranchisement, which warrant further analysis. Technology and its discourse provide them with added value and effective support, without ever reaching the core essence that secretly guides them. This leaves a gap that serves as an enigma. For it materializes a zone of reversal and turning point conducive to individual movements, which situations of vulnerability – viral inequality, for example – flatter and bring to light. It is possible to take care of oneself, and thus of others, without this being either the source or the result of an acknowledgment or a contestation of the political dimension of the act performed. Taking care of oneself can also be partially against oneself, contrary to or in ignorance of certain interests of the self, but not without these being, indirectly or by default, neglected due to the overriding importance of subjective necessities. These spectacular emergences, every time – be it bareback, slam, or Ipergay – translate versions of care and reconfigurations of the status of the other in relation to a self overturned by the reversal it operates to ensure its individual response to its subjective necessities.