gwen fauchois’s speech at the conferences.

gwen fauchois is ex vice-president of Act Up Paris, and minority political activist

The defeat of expertise, against progress in health: Covid, a defeat in the fight against AIDS? A return to the exclusion of concerned, minority, vulnerable and/or ostracized citizens and populations from expertise and from the development of policies to combat the problem.

Original text (in French) available here.

gwen fauchois, souriant, assise sur un muret

Thursday, september the 26th

(Subject to the pronouncement)

« I will start by briefly explaining on

               – Why I am here ?

in order to situate my words.

First of all, I have past experience in the fight against an epidemic, as an activist against AIDS and as vice president of Act UpParis in the dark years before the arrival of triple therapy,

I am here to represent knowledge and experience that are not institutional but come from those who have been directly affected. I want to embody and transmit the militant memory that has been lacking and continues to be absent. This is also why I fight for the creation of an LGBTQI and AIDS archive center in Paris, a city that suffered greatly during the acute phase of the AIDS epidemic, to the point of being known as the European capital of AIDS, and the Île-de-France/ Paris region continues to account for over 40% of all undiagnosed people.

Additionally, I am here because it is crucial to act in the present.

And I remain committed to both health struggles and the defense of minority rights. We find ourselves in a situation where we are extremely few, largely due to structural reasons and the specificities of minority struggles, generation renewal, age group and lack of transmission tools, which limit our ability to combine these past and present experiences.

-Because I was also part of the pre-lockdown whistleblowers, those who did not wait for public authorities to intervene to urge action and self-organization

-And because during the lockdown, I contributed as an initiator of actions and reflections, analyzing the situation in a concrete and analytical manner.

-Finally, I am part of the informal network initiated by Winslow Santé Publique that brings us together today, that promotes health self-defense, harm reduction, the right to health, and is primarily organized around vulnerable individuals, the disabled, Long haulers, and people in solidarity. 

It’s from this situation at the intersection of various struggles that the perspectives I can share are nourished , linking experiential knowledge and politics.  .

Why emphasize the fight against AIDS?

Although at first glance COVID and AIDS are very different, and moreover I am not a fan of comparisons between the two epidemics. This is because the comparisons often tend to be simplistic and even counterproductive, as the imaginaries that accompany the perceptions of both epidemics are distant and can lead to erasing the specificities of each, fueling relativism and denial.

However, despite these reservations, anyone who has faced epidemics knows that their management confronts us with invariants. Even before the lockdown, I wrote that the experience of the fight against AIDS warned us that the coronavirus epidemic would be as social as the state would react late, minimize the situation, and shelter behind « French excellence, » prioritizing the economic apparatus.
From the outset, we knew that social measures would be the last to be decided, and that amid the epidemic, those who would be most affected would be the most vulnerable: the elderly, the immunocompromised, those with comorbidities, women, the poor, the precarious, migrants, the homeless abandoned on sidewalks, those who already have no access to healthcare—essentially, all those considered expendable.

All those most vulnerable are us and our loved ones. And as we already know, the state doesn’t take care of them. It is us who take action (1).

That is why, I have advocated for drawing inspiration from our experiences, from popular knowledge and solidarities. The knowledge of those who know they must first rely on themselves. (1).

On the other hand, we cannot overlook the fact that COVID intervened in a context where the relationships between users, health associations, and medical authority, as well as political power, were largely governed by dynamics inherited from the struggle against AIDS. A French model that has almost been labeled as health centric. A form that, with varying degrees of success, borrowed from claims for participatory management, even positioning itself as co-management.

It is also important to recognize that many of the doctors who mobilized—both the pioneers and those who paraded on media platforms as expert epidemiologists—were, for a significant number of them, products of the fight against AIDS. They were young doctors from the 1990s, activists, who then climbed the ranks of the medical hierarchy.  

Finally, when the government claimed to exercise unilateral and vertical power, it chose two prominent figures from the AIDS struggle: Françoise Barré-Sinoussi appointed by the Élysée Palace to lead the committee for research analysis and expertise, and Jean-François Delfraissy at the head of the COVID-19 scientific council.
Yet, it is against the heritage of the fight against AIDS, which demonstrated that the participation of citizens and affected, minority, vulnerable and/or ostracized populations in the development of policies to combat AIDS is a condition of their reach, that the policy against covid has been and is organized.

Quickly, this involvement from the AIDS struggle turned into a façade.

Contemporary and past activists gathered to demand from expert committees a genuine participation of society in decision-making, insisting not to betray our shared history for which they had been appointed. However, the responses from these expert councils remained unanswered and our appeals, letters, tribunes and vague relays from the board of experts were in vain. Perhaps, in fact, that was the reason for their appointments: to distort our achievements under the guise of legitimacy.  

We need to learn from this experience.

Amidst various forms of denial, we collectively tend to boast about our expertise while simultaneously underestimating and rendering invisible the warning signals. The state of public hospitals and health policies has been flagrant examples of this.

We tend to invigorate knowledge by distancing it from its foundational contexts, which ensure its ongoing relevance, and we freeze it once it passes through institutional filters, even turning actors into mere subjects of study. And this, regardless of the good intentions of those involved, including those affected. 
By shifting from a discourse of experience to one of expertise, we transform every narrative, speaking for others instead of to them.  

This has had significant consequences during the COVID crisis; the elevation of actors from the AIDS struggle and health democracy drained the term of its meaning, while the actual policies implemented were precisely the opposite.

Lightning rods, while frontline healthcare workers were overwhelmed,

Lightning rods of the management of organized shortages—beds, healthcare staff, masks, medications, equipment, and democracy.

Cautions for overarching measures that exacerbated social inequalities, disparities in vulnerability, implementation, and exposure to the virus.

At the same time, conditions were created that hindered adherence and fostered deep distrust towards those associated with institutional power.  

This rupture with concrete embodiment did not create conditions for reflection and action in response to what the crisis demanded—not only in the present but also for the future; rather, it favored regression.  

We spent some time discussing the world after the pandemic, rushing to demand a swift return to the world as it was, and even backwards.

While criticism was largely left to conspiracy theorists, anti-vaxxers, and proponents of mass infection. The managerial left only awakened to point out the dismantling of hospitals or production systems, while the associative left focused on authoritarianism. Yet neither engaged in the necessary articulation of all these dimensions with the need for prevention and healthcare management.

And if it is crucial to highlight all the grassroots actions that made lockdowns possible through micro-social self-organization (solidarity distribution, shared childcare, fundraising, housing searches, handmade masks, and investment by teachers, including on their own dime, and even initiatives by local authorities), in a more global and long-term way, unfortunately, this was a shared failure of the political opposition (except only a few individual initiatives), that can even be extended to the community, cultural and media left, particularly noticeable as the urgency of the situation began to fade.
We note that very few of these initiatives led to sustainable measures.

And we saw a similar phenomenon with Monkeypox—an effective mobilization in response to public inaction that dwindled as urgency diminished. 

Activists and people living with HIV demonstrated that when they were listened to and their capacity for action was supported, the struggle improved.
This stands in stark contrast to the vertical, authoritarian political discourses that undermine the ability to understand and take charge of one’s own situation.
I still have in mind an emblematic example in the fight against AIDS: the provision of syringes, which we were told, in addition to dogmatic and moral opposition, would be futile, yet once implemented, it led to a significant drop in drug user infections.

It’s not only about remembering, commemorating and analyzing (all of which are necessary, as the absence of memory is not only linked to traumatic processes and the time-consuming work of mourning, but is also culturally and politically organized), it’s also a question of giving ourselves the capacity to act in a living, situated way. By taking into account past experience and popular resources, as well as the specific features of each epidemic and its different timeframes.

And without disregarding the material and specific conditions (which should be a basis for left-wing analysis) in which people live and epidemics develop, i.e. anything but undifferentiated and universal.

The acute emergency and epidemic phases and the endemic phases each have their own characteristics. What they have in common, however, is that the fight cannot be effective without appropriate means and investment, nor without ownership.

Endemicity – I’m not telling you anything, of course – doesn’t mean the end. And denial is not a health policy.

Burying an epidemic means first, burying people. Slowly by long covid, by mourning of all social life and health, but also very literally 20 people every day. In almost complete indifference.

The fighters against AIDS had managed to convincing people that their deaths were unacceptable. Today, government management of covid has produced the opposite: increased acceptability of preventable deaths and socially-produced inequalities. And the exclusion of those concerned from decision-making processes. Which extends beyond covid.

Should we be surprised that it is now so easy to attack AME (State Medical Aid) or the right to healthcare when health is framed as an individual issue?

Would it have been possible to claim to implement a pension reform like the one the government pursued if the management of the COVID crisis had truly been collective, participatory, and supportive?  

Would it have been feasible to attack sick leave, long-term sickness pensions, or to push through legislation on end-of-life issues without even addressing the legitimate concerns of those whose right to healthcare is being violated? 

What avenues and what conclusions can we draw for our fights ?

Despite investments and good intentions, not only has the fight against AIDS failed to have an impact on the Covid management, but it has also been instrumentalized to support regression.
What about today?  
Self-defense activists, healthcare workers and researchers, today Act Up Paris, still remain committed, but their influence is more than marginal. The context is far from favorable. 
The fight against COVID lacks what little remains of health democracy. It does not have the support of the left. Activist methods have multiplied but at the same time lost their effectiveness. Moreover, they are poorly adapted to the transmissibility characteristics of COVID and the most vulnerable populations. However, they are not entirely impossible. 
Yet I believe we need to return to the roots of the fight against AIDS. Initially, we should set modest but prioritized objectives.  

First, we need to secure mandatory mask-wearing in healthcare settings and address the air quality we breathe there. Transport, schools, places where you lock down and segregate people, would be the next targets. 

Following that, we should establish research protocols for preventive and curative treatments, demanding the participation of patients and patient associations at all stages—development, monitoring, and modification based on side effects, sharing the results—ensuring that they are not merely consulted but treated as full participants. 
Conversely, we must demand the exclusion of corporate interests, such as McKinsey, which was hired for vaccination strategy. 

Returning to the source, as I said, means remembering that health democracy was born nd has only functioned from a power struggle with institutions and policymakers. It imposed itself through conflict and by assuming that conflictual dimension.  

  • The foundation, is that neither the institutions of power nor the opposition will respond to our demands without being compelled to do so. 
  • The foundation, is that without popular auto-organization, we entrust the state with defining healthcare policies, allowing it to develop a capitalist model of health when we desire a policy focused on care production.
  • The foundation, is that without an assumed conflictual approach, co-management reduces to merely supporting choices that prioritize the financialization of health, turning participants into service providers or free subcontractors without decision-making power.

With the rise of social and solidarity economies, we even see this showcase co-management being replaced by profit-driven channels that are no longer social or supportive in any meaningful way. Additionally, the organization of the associative world is increasingly governed by state control, imposed normalization of practices, the development of mandatory diplomas and certifications, subsidies, and competition.  

So we have to work in parallel:

continued our self-training and the transmission of that knowledge, it is both a necessary condition to master the challenges, clearly express our needs and requirements, and it is also a matter of credibility.  
However, no one can be an expert in all areas. Therefore, it is essential for us to structure ourselves to articulate training and expertise so that we can effectively oppose when and where it is appropriate. 

We must work to change public opinion and, in particular, establish bridges with intermediary bodies and associations such as hospital staff, parents of students, trade unions, and other struggles—all those who have nothing to gain and everything to lose from policies that legitimize and reinforce hierarchies among lives.

This involves a double challenge: considering COVID is a necessity and a material condition for our possible participation. 
And along the way, we’ll find not only the inertia, denial and validism that feed the majority narrative, of course the liberals but also the conspiracists, and now the alliance between libertarian authoritarianism and reactionaries. And we have to face up to the rise of the new fascism : fascists that are organizing and structuring themselves more and more every day, disseminating themselves and infiltrating intermediary bodies, the media and decision-making instances. The far-right Rassemblement National is merely the tree that hides the forest. 

We need to improve our communication, especially visual communication.
We must distinguish between
             –a simple and friendly communication directed at the general public, which could be disseminated through social media, and pedagogy on deferred effects, reminding that those who adopt the government’s narrative act exactly as it wishes. It is crucial to continue demonstrating self-defense through example. 
               –a more agressive, critical and demanding communication directed at institutions.

– Work on structuring a network, taking into account our specific militant, health and material characteristics – the exchanges of these two days are a good start – so as to coordinate actions, mutualize our strengths and knowledge and increase their virality and capacity for impact. Establishing international connections when possible. Here again, We should draw inspiration from the actions of other struggles, like the BDS movement organizing tweeter storms, modern form of phone and fax zaps launched by Act Up-Paris.

– work to develop reflection and analysis on health economics and policies.
What lies ahead augurs well for more than just COVID. 

We will face an unprecedented strategy of dismantling and privatization of our social model. The transfer of the management of the social security budget to the State was just a foretaste of financialization and budgetary constraints. The instrumentalization of sick leave and attacks on long-term illnesses pensions are just the early signs. 

As an optimistic pessimist, I would like to think that the brutality of what awaits us might paradoxically be our ally, as long as we are able to link the challenges of COVID with the ongoing social war. »

(1) : The text is available here : http://gwenfauchois.blogspot.com/2020/03/

Link to the vidéo :