#07 SEROINVOLVED

All Eyes On > #07 SEROINVOLVED

Be Positive

Luca Modesti

He/Him

IG:@erbaghetta @coniglibianchi

Linktree: @ErBaghetta

Reading time17 min 24 sec

Speaking time33 min 27 sec

Scrolling through Luca's IG you can come across the word seroartivism - a neologism that breaks down the barriers of misinformation and fear. If you haven't got the curiosity, get some and read the following:

Luca AKA White Rabbit stumbled upon the concept of seroartivism while navigating the challenges of his HIV diagnosis. Despite the initial shock and feeling overwhelmed by the stigma surrounding HIV, he found solace in an environment that could have been picked straight from a fairy tale—living in a home with individuals deeply involved in HIV/AIDS activism. As Luca learned about the effective antiretroviral treatments which could enable a normal life expectancy and suppress the virus to a point that it could not be transmitted, he realised the sheer power of awareness and medical advancements. These discoveries spurred him and his friends to initiate a project aimed at educating and widening the discourse on HIV transmission, thus giving birth to a concept they called seroartivism.

“It's a very personal journey, as it could not have been any other way. I had no knowledge about HIV until I made the decision to move to Australia.

I believed, based on information from the embassy website, that it was necessary to provide a serologic status test. Due to bureaucratic requirements, I had to take the test even though I did not have any symptoms. This was also because I later learned that symptoms may not appear for up to 10 years. The HIV test was conducted to confirm a negative result.

Surprisingly, the results were inconclusive. The test was repeated with the same outcome, making me question the accuracy of the clinic performing the analysis. I mentioned that I had a flight to Sydney and requested the results to be sent to me via email, as I would not have my mother pick them up.

I boarded the plane to Sydney feeling uneasy about declaring myself as HIV negative without being questioned or asked for proof. However, upon receiving the test results via email, it was revealed that the third test confirmed a positive result. This was unexpected and shocking to me.

To summarise, I discovered my HIV positive status in a surprising manner. I was born in 1983, around the time when HIV was first recognized as a disease, with the epidemic starting in 1981. Initially, I thought it was a death sentence due to outdated and vague information.

Coincidentally, I found myself living in a large house with other individuals, including a couple consisting of a dog toilet cleaner and the founder of Australia's main HIV/AIDS clinic. This setting felt like something out of a fairy tale, with surreal elements resembling Alice in Wonderland.

I was 28 years old in 2011, which was before the age of 30, the maximum age for working in Australia. When I shared the news of my diagnosis with someone, they provided me with information about the effectiveness of antiretroviral therapies introduced in 1996, which prevent the replication of the virus.

They are not cures. In the sense that they do not eliminate the virus, they simply trap it in the cells. Each time the virus tries to replicate, to emerge, it is blocked by these drugs, essentially acting as a barrier. I was unaware of this. The doctor then informed me that my life expectancy would remain the same as it was before. 

I questioned this, and was told that due to the ongoing challenge of chronic inflammation affecting individuals with HIV, constant monitoring is required. Regular check-ups every six months are necessary. This level of care is uncommon globally, and having access to such frequent check-ups is a privilege. This proactive approach helps offset the effects of inflammation, allowing people living with HIV to have a similar life expectancy as others.

I also learned that despite having the virus, I could lead a normal sexual life, as not only does the treatment maintain health, but it also prevents transmission. This was news to me. It was explained that routine tests were necessary, along with bi-annual hospital visits. 

In countries with healthcare shortages, such as Italy, individuals may need to visit the hospital more frequently to obtain their medication. This ongoing care reflects the medicalised nature of living with HIV. However, I discovered that it is not as medicalised as I thought.

I then inquired about the high number of new HIV infections despite effective treatment. I was informed that transmission can continue unknowingly, as symptoms may not manifest for several years. During this time, the virus can weaken the immune system, making the individual highly contagious. This realisation was shocking to me.

After discussing this with friends, we acknowledged our lack of awareness on the topic, despite considering ourselves well-informed. We collectively decided to fund a project aiming to educate others on HIV transmission and broaden the conversation. It is essential to raise awareness about the potential risks of transmission, even in seemingly stable relationships.

If all transmissions take place in couples that are supposed to be monogamous, perhaps beyond the information about the enzyme or the science, there should be a reflection on how we live our relationships.

With that, let us say artivism, because art also allows you to appeal to people's gut, to their heart, to their head, to what they think. We did not want HIV to be reduced to a scientific topic. 

It is a political issue, because the lack of politics is a political challenge, because there are still 12 million people in the world who have no access to therapies, if we do not have sex education in schools, that's to the advantage of a political class, and so on and so forth, because all the advances that have been made in medicine as well are the result of tremendous pressure from the HIV movement.

So we wanted to restore that thing because we felt that all the associations that exist in the world are not working on culture; they are only working on services.

We wanted something cultural and political. Activism is considered art here, so that's what we focused on. We were essentially a group of friends, a collective. Initially, we sought help from comic artists, hence why we initially called ourselves Comic Artists Against Stigmatisation. We came up with the term serophobia, which gained traction later on. It's funny because we were mocked initially, but now big names are discussing serophobia.

I remember inventing this term during a competition at a club. The word serophobia in French caught my attention, and I thought it made more sense. Many organisations reached out to me, intrigued by the word and its origins. They felt it should be in Italian since HIV-phobia wasn't as well-known. 

When I fell in love with my current partner, I struggled with disclosing my HIV status. We had a complicated history, but ultimately decided to take a chance.

Backtracking a bit, I was fortunate to have a doctor friend in Australia who helped me through my diagnosis. Depression is common among people with this diagnosis, especially when faced with limited information and support, like in Italy.

They tell you two or three things but they tell you exactly what you need. 

He did not want me to be distressed. This news really worried me, but he said,  «you can't be hurt, you are not dangerous, your body is not contagious. Your life is no shorter than it was 10 minutes ago.»

When I fell in love, I understood the mess because I realised that the problem in my daily life was not technical, it was social. HIV did not physically affect me, but it affected me emotionally.

It can be any potential partner for a night or a lifetime. People tend to be scared, and every time I mentioned it, they ran away. In casual encounters at clubs, sex clubs, or dating apps, you didn't always have to disclose it, but sometimes you did, as a precaution.

To remain undetectable, you must be on therapy properly.

Being undetectable means your viral load is so low that it cannot be detected in an HIV test, meaning there's not enough virus in your bodily fluids to transmit the infection.

So it's crucial to adhere to therapy correctly and consistently. I didn't have many issues until I fell in love and had to disclose my status. I travelled to see him in Oxford one night and attempted to tell him about my condition.

Before the waitress brought the appetiser to the table, he shared with me that his biggest fear was AIDS.. Due to performance anxiety, that night I was anxious also from taking too many pills of ginseng and ginger. I couldn't bring myself to tell him the truth because I feared losing him.

His fear was understandable but based on ignorance, which frustrated me. When I finally mustered up the courage to confess over Skype, he simply said it didn't change anything for him, relieving my worries.

You really pulled a nice rabbit out of the hat. So it was actually him who evoked the rabbit metaphor( N.B. read about collective and the book) which initially was a synonym in our slang for a coming out and then the virus itself, in short, we called it -the rabbit- .

Then, with the group that formed on a couch of friends, some of whom had already been activists, while others were simply people involved in the subject.

And speaking of which, there were many other reasons why it made sense to call ourselves White Rabbits. The main reason was certainly the homage to Lewis Carroll's Alice in Wonderland, because the White Rabbit is in a way what leads Alice into a world that initially seems bottomless, and so it was very exciting for us to present HIV as a seemingly dark well with no end, only to discover the things we had said so far if you were curious enough to delve into it.

It's important to know that it's not something you have to run away from.

Knowing these things gives dignity, strength, and value to your emotional and sexual relationships. It also transforms the myth of trust. I trust you, but you don't trust me. On what basis?

Certainly. No, and so it is based on mutual knowledge. Okay, but if it is based on prejudice or fear of judgement, it's madness!

That's how all the chaos starts. The stigma. And so Alice's White Rabbit is one of them. There are other reasons as well. So my avatar is the White Rabbit.

It also helps to emphasise the seriousness of a subject that is often burdened with heaviness. We were truly inspired by those trumpets.”

The collective’s quest was not just medical but also cultural and political, challenging the silence and misinformation surrounding HIV. Luca's collective, which started as "Comic Artists Against Stigmatisation," blended the potency of art with the urgency of activism. They even coined the term serophobia to encapsulate the prejudice surrounding the virus.

Their movement was propelled by not just the creation of art but by the stories and experiences of those affected by HIV. The collective fought against outdated notions and spread awareness with the aim of instigating political and societal change. Their battles were many—against institutional silence, misinformation, and the exclusion of women from preventative treatments like PrEP.

In all of this, rage was a fundamental driving force, leading from the front was the anger against injustices, against a public health system that failed so many, and against a virus that had been met with global indifference. This rage was not just destructive but constructive—it motivated the collective's calls to action, fostering solidarity and pushing for progress, no matter how incremental.

“I am an illustrator and create comics. I work as a graphic designer to pay my rent, but I am not a well-known comic book artist. In the world of comics, I have done a lot of curation, as I curated three different comics festivals.

In Rome, I organised Bande de Femmes at the feminist bookstoreTuba Bazar e in the Pigneto area.

I was the art director for the first five editions

 It was a lot of fun, as we came up with exhibitions in the neighbourhood, the programs were full, the festival never lasted less than four or five days.

Then I organised Combat Comics, a festival denouncing reality, organised by a theatre in Livorno called Teatro Officina Refugio.

I worked there for five years, and it was a collection of comics that were politically oriented, with a lot of graphic journalism, as well as some silly things from a political perspective, silly but compromising. We also did another thing in Rome at the Cinema Palazzo, with Zerocalcare, Spataro, and Tony Bruno, called Nuvole sulla Città

It was a beautiful experience, but a struggle for some, as they thought they could do whatever they wanted, but were often guided into discussions to align with our vision. We didn't want certain themes in the illustrations, like sentimentality or an exaggerated focus on superhero themes, often seen in AIDS campaigns.

We didn't want that. It was a nice mix, and it worked well, it was a beautiful journey of growth and transformation.

Have I always been the same? No. Have I changed over time..Yes, significantly.

People may have disagreements, and some friendships may come to an end.

This collective was born in Rome. The challenge was maintaining unity as members went their separate ways, some even abroad. We worked on campaigns, initiatives, organised events drawing large crowds, participated in festivals, conferences, and shows, blending theatrical performances, drag acts, and music into our visual arts projects over time.

Being present everywhere at all times, there's a really nice conversation.

But in the end, many individuals questioned us, saying things like «I'm a white rabbit» ..but we work for elective affinity ..You have to be people who have actually met, sought, and liked someone in the world.

That's why it's strange. Thus, I believe there are a lot of people in Italy who are referred to as «white rabbits» however, the collective is not very large. 

To what extent has emotional engagement helped or hampered the process of turning it into art? I guess the best response I can provide is based on what I actually did. Well, but I'm confident that, well, yes, that there was a strong demand for many people to be free to carry out these actions.

Making art with this concept required breathing deeply and take off a burden. And not necessarily because they came out as HIV-positive individuals in a public manner; rather, it's because we have always supported and enabled people to come out as HIV-positive individuals while secretly veiling it.

In the recently released book, we did not want to sign the tales precisely because anonymity gives you strenght and protects you. We have left space for signatures on the last pages, but in such a way that it is not clear who did what.nd, the names are listed alphabetically rather than according to the chapters.

..Some of us remembered lovers, others people who passed away while we composed these stories. They are very distinct from each other; the narrative of the 30-year-old girl born with HIV is different because it comes from two AIDS patients before the treatments were developed. Someone who has experienced the horror of the 1990s and lost all the beloved ones is likely to exhibit emotionality for other reasons. Indeed, there is a great deal of resentment on the open challenges these days. Thus, whatever our interventions may be, there is a significant component of rage in them.

Consider the immobility of institutions in contrast to some passages. It is undoubtedly regrettable that Italy, along with Bulgaria, Cyprus, and maybe three or four other nations, appears to be among the select few that do not offer sexual education in their school curricula.This is because, while the center-left movement has succeeded in other nations, ours is too avaricious in comparison. Therefore, they weren't even on our side. As a result, the effects are evident to all, widespread ignorance exists, and infections occur. Additionally, infections spread to others who weren't supposed to.

Thus, there is a political obligation. Additionally, there has been the PrEP drug for a long time, which prevents HIV infection. It is only given to LGBT individuals in Italy and around the world. Thus, one of the few women in Italy is represented in our book. Out of the 6,500 PrEP users in Italy, only 24 are female. The exclusion of women is absurd. We are bringing this anger, which we also bring to the associations, around.

The conflict is also a means of advancement because it is not abuse. As a result, those who identify as homosexual or affiliated with the LGBT community, who undoubtedly played a major part in the epidemic, have been the most impacted and have responded first. Now, ironically, in comparison to the general public, they also engage in gatekeeping when it comes to our perspective on HIV. For instance, they postulate that women shouldn't be interested in PrEP, which not only excludes all sex workers but also the entirety of the BDSM community, which includes situations like the exchange of consenting blood, consensual violence, sex toys, etc.

The fact that individuals who identify as peer educators, experts in sexual health, etc., discriminate so strongly against us is a challenge that needs to be addressed. In summary, the book that was released a few weeks ago offers a constructive method of fighting with everyone, and one of the emotions that is always present is anger—a very strong kind of anger. However, it is also the rage of HIV's past, as it was this rage that forced the medications to come on schedule and spared them from facing any further delays. Essentially, it was the frustration of seeing the doctor-patient connection, which was once vertical but has since shifted slightly due to HIV, subverted, that has completely changed this one thing - "Give me the pill; I want to know what it is; I'll research it more thoroughly than you will; I want to make a decision. Speak up about the choices you make regarding my skin. It's the only infection—I prefer not to term it a disease because HIV is currently a chronic illness."

However, this is the only epidemic or scenario where activism has occurred. Currently, there are groups of people with tumors; they do exist, but they are the offspring of this illness. This movement has me as its son. Furthermore, it was unavoidable that there would be prejudice present and the Vatican's silence, don't you think? Four years after the start of the epidemic and thousands upon thousands of cases later, Reagan in the United States nominates the HIV, and the institutions were utterly silent.

In reality, it was known as the "great silence" period. The second silence is the era in which we were born.

People stopped dying suddenly when life-saving treatments were discovered; this was only true in Europe and other nations where free remedies are available, not everywhere in the world. Yes, it always has a more Western, white appearance. Furthermore, the sexual revolution that had just started in the 1970s and had liberated the bodies of many communities—women, gay men, and transgender people—was halted by AIDS. I mean, being born in 1983, there was a world before AIDS that I can hardly even begin to understand. But it seems to have been stopped. It was clearly halted there, beyond the origins of HIV, without forming any kind of conspiracy.

It's not a plot because of how it was used. The categories effectively criminalised them. When there was an AIDS pandemic, homophobic incidents for decades again surpassed those from before World War II. That is to say, society has progressed instead. However, sexuality was criminalised in general. When the condom finally arrived, it became an indicator, a sign of degeneracy. What makes a condom necessary? You either have to have sex or only have sex with your spouse, wife, or fixed partner, correct? This is somewhat the same dynamic as today's highly criminalised PrEP. So why would you want sex without using a condom? It doesn't have to be enjoyable; it just needs to be done consistently. Thus, AIDS is also associated with a certain amount of sexism. Because stigma is the terrible culmination of not only the taboo of sex in hyper-Catholic communities, but also the fear of the disease that causes death. Therefore, the combination of these two factors—embarrassment and fear of health—creates serophobia. Therefore, we have decided to reclaim pleasure and ignore the reality that sex is lovely, clean, and acceptable. Additionally, this is where the book's subtitle—that is, the sexual revolution—begins—as HIV. That's where the interruption occurred. We believe that this comes from the second silence. It affects everyone. It isn't an identity movement at all. Since numerous identities in today's world have been. 

Did you know that white socks turn pink when a red sock is placed inside them? Indeed. Also, you need to understand that these three things don't require seven hours to complete; if you grasp how they work, one hour is sufficient. These issues affect everyone, or at least everyone who engages in sexual activity. It's not necessary to discuss them all the time. Because of our mental health, we discuss them daily with people all around the world.

However, it's not something you have to worry about in daily life. We are all involved in the cause. We believe that there is not enough political will to effectively stop the epidemic. The World Health Organization, it is known by a few different names. But the same concept applies. The organisation states that we must move towards 2030,, the goal was to start antiretroviral therapy for 95% of the population urgently and ensure that 95% of them adhere to their treatment plans.

They hope to complete the project by the year 2030. However, before to achieving 95% by 2030, we were aiming for 90% by 2020 every time they adjusted the goal. They make small adjustments, raising it slightly and increasing the proportion.

But it's like chasing a carrot on a stick. At first, we are excited about the goal, and then we quickly become frustrated. However, the underlying desire is to ensure that everyone, especially those in the southern hemisphere, has access to necessary medications. This is especially important as Covid has highlighted the need for equitable access to healthcare.

Preventative initiatives often rely heavily on fear to drive behaviour change, but I believe that empowering others and providing them with choices is a more effective approach. It's important to focus on positive solutions rather than constantly reminding people of negative outcomes.

Large organisations often use fear tactics to try and motivate change, but this approach is not always successful. Inciting fear around a topic often indicates that it is not openly discussed or addressed. Instead, we should focus on empowering individuals to make informed decisions without fear of judgement.

Moving forward, it's crucial to continue working towards positive change and collaborating with other organisations to achieve common goals. I believe that the key to progress is through empowerment and collective efforts rather than fear-based tactics.

There was a power imbalance between homosexual figures and other subjectivities in this movement. How do you feel? It wasn't faultless. However, they became enraged and undoubtedly had the impression that they were seeing a slaughter. They held hundreds of funerals each week. Consequently, there was anger inside that would eventually surface.

But power was imaginative beyond measure. ACT UP truly does win in terms of communication because they were able to intercept a significant number of individuals working in the creative business. So I suppose you gave it a call? I'm sorry. I'm sorry. No, because I spoke about the HW movement before ACT UP,they did a fantastic job of conveying the kind of message that says, "Leave the media behind and assume the role of the media."

When it comes to acts of civil disobedience ACT UP were more courageous and launched a direct assault on the church, blocking all access and retreating into the pharmacy offices in a state of terror. This story is told in a lot of movies. The 120 beats per minute film fiction based on a true story is undoubtedly my favourite. However, there is also a stunning documentary named United in Anger available on YouTube

By creating a divide and conquer strategy, the health movement avoided disintegrating. However, the infection was not the only cause of death. They perished as a result of the annual halving of the public health budget. And prior to COVID, the Latino population had vanished. It's not like COVID arrived and that's why it happened. Everyone is aware of this since they all have older relatives, can relate to being tired, or suffer from long-term illnesses. It has to do with the weariness of public health, yet it is meaningless. Thus, Luca Attivista is interested in doing that. Of all we have discussed, Luca Artista has never created a true comic, and the editor yesterday, during lunch, threatened to cut me off from his conversation if I don't complete it. I will therefore begin writing this short story, which is a bit In essence, the activist look and the artist look are the same. I mean, there's not a single verse about activism. I don't recall if I told you this previously, but feminism has always maintained that the personal is political.”

Luca's story is one of transformation, where the diagnosis that could have been a stigma became a source of power, a catalyst for dialogue, and a means to art that could indeed influence and inspire change. It's a tale that not only acknowledges the struggles faced by people living with HIV but also celebrates the unyielding spirit of activism that refuses to be silenced.