Image: ‘Hummingbirds’ (Installation of 6), 2016, by artist Eric Rhein
I wanted to elaborate more on the concept of ’transcendence’, mostly because I have some reservations about it. BUT, the fact that HIV is a disease that you live with took me to the place of transcendence. I departed from Eric’s work and paid especial attention to it. The aesthetics of the drawings helped to describe such transcendence in the LTIH project. (more about it later)
For me, the starting point for a reflection about HIV and stigma is to re-situate us in what it means to be ‘healthy’ and what it means to be ‘ill’. I’d talk in terms of health ’state’ rather than ’status’, meaning that state entails more than the exclusively physical condition of a body. ’Status’ objectifies, quantifies and causally determines the body—thus, allowing the commodification of it—, creating a sort of ‘snapshot’ of an organism. A body is certainly an organism and, as such, it is its dynamic properties that make our (changing) existence possible. I want to consider existence as ‘being-in-the-world’ in a joint project, so ‘being-in-the-world-with-others’.
I turned to a book called Existential Medicine (2018), which interrogates the current/dominant view on health and illness within medical thinking. I thought of what Todd told about the meds and how the impersonal and instrumental framework of the health system treats/control bodies reinforcing the stigma of certain diseases like HIV (I’m generalizing, but I do think that medical thinking reinforces stigma 90% of the time, including when it manipulates genes to design enhanced bodies like Lulu and Nana)… In one of the texts, which uses HIV as example (I’ve attached the article), the authors argue that our current model of medicine/health system does not acknowledge the existential character of the human body, ie. the human body as expression of its intersubjectivities and the fact that a body is not only an organism, but also the means of one’s existence, in the sense that a body is the existence of an experiencing subject. This phenomenological approach goes together with the necessity of treating the ‘person’ and not only consider the reductive view of the body as detached from the context of mutual existence in the world. […]
After all of this, I tried to be more objective and start to write a ’statement’ by raising the questions:
What is Luv ‘Til It Hurts? It is when virtual pasts and futures are erased from a lifetime and what remains is a thin stroke of obliterating gestures. This is the trail of a new existence. The thinnest part through which life can be recognized. It is the abbreviation of the normative and the construction of a spatiality dedicated to the encounter of stigma and love.
Why the body? The body is forgotten in a state of health. When a disruption occurs in the body, it rapidly changes our awareness of it.
What is the duration of an epidemic? How does a never-ending-epidemic look like? Epidemics draw on the concept of being ill. Every disease is a disruption in the balance of a body and, more importantly, this ill body disturbs the normative context of the other bodies and their shared functions in public life or in a society.
Despite the fact that HIV evolves from the inside, the narratives of sickness develop from the outside, although an environment comprises of both. LTIH addresses the comprehension of a body beyond its organic, ‘causally determined entity in the physical world’, but as an imbroglio of metabolic exchanges between inside phenomena and outside circumstances.
Proposition of a framework for transcendence
What is transcendence?
Transcending is the impossibility of living in one of the poles of dichotomies like life and death, health and illness.
Much of the stigma on HIV still resonates the death sentence that comes with the diagnosis—even if today we can speak about preventive methods and treatment and an undetectable viral load… living with HIV expresses more than being alive or dead.
Is transcending an escape? No, transcending is to open a breach in the stiff portion of soil underneath our feet. The middle is not something in between, but it is produced by the impossibility of living in one pole of a dichotomy. It is not to be an actual object or subject of something, but the very process of subjectification.
It is to transform memory into future-making and what comes next into one more thread to bind. It is to stay with the contour of things, instead of reinforcing the contrast of positive and negative sides (Eric’s work).
Am I proposing a sort of immanent transcendence? Maybe…
[*Early this year I got the chance to talk to Vinicius Couto in São Paulo about three strands of his work. The article contains images from a performance he made in São Paulo, Rio and Cairo. I was particularly interested in his idea of getting HIV+ people together, as well as what he says on ‘aesthetics’. His initial interview took place before COVID19, and I asked for clarification on his idea for getting people together a few days ago. xo Todd]
TLL: Você disse que o seu trabalho tem três áreas. Eu lembro de duas: Visitar países que não permitem pessoas positivas de entrar, como o Egito; E criar ou participar de uma rede de pessoas positivas? (Esqueci: eram pessoas ou artistas?) … Você poderia explicar as três e talvez falar sobre as conexões que existem entre elas?
VC: Sim, hoje, pra além da [I=I] – trabalho que me introduziu no meio da performance, tenho mais 2 projetos:
O primeiro é que nos próximos 10 anos, pretendo hackear os outros 47 países que restringem de alguma forma a minha entrada/permanência enquanto corpo positivo, independente de estado sorológico. A abertura se deu no Egito.
Ainda não sabemos exatamente como vai ser a minha atuação, mas a princípio sabemos que será uma visita com entrevistas e o meu estigma (o figurino de cabelos) ocupando a cidade. Como se ficasse explícito que por mais que exista restrições de entrada, a Aids existe em todos os lugares.
O segundo é um projeto de 3 meses, ainda não encabeçado, que vai promover encontros a partir de um convite feito por lambe-lambes distribuídos pelas ruas da cidade. Nos encontros eu pretendo propor conteúdos que abordem questões positivas, entre filmes, informativos, performances e o que mais acontecer, com foco em conteúdos brasileiros e ao término eu proponho uma roda de conversa junto com um questionário que levantará dados pra uma performance de reprodução de corpos.
E o trabalho que já existe é a I=I que é anual e gradativa, a cada ano são adicionados mais 365- frascos condizentes aos meus dias de tratamento desde que iniciei.
Além desses tenho um outro projeto ainda em especulação que é uma “cura dor ria posithiva”, onde convidarei artistas positivos a proporem novos olhares e possibilidades de visões desafogadas de tristeza e morte. Acredito que vem chegando o momento de pensarmos a luta positiva com menos dor e mais força.
TLL: Na verdade eu queria entender a sua prática artística. Não sei se você tem um ‘artist statement’ ou algum texto sobre essa sua ‘viagem’ artística. Por favor, poderia nos falar abertamente sobre o que você faz na vida .. e com a arte?
VC: Definitavamente, não tenho nenhuma estratégia nem pontos de partida. A minha vida sempre foi definida pelo acaso. Nunca consegui programar muitas coisas, talvez pela falta de grana ou até mesmo pela minha personalidade.
No trabalho, escolhi investigar na arte, na moda e no cinema, corpos não normativos. Iniciei essa investigação em 2010, quando abri mão muitas vezes de trabalhar no meio branco/rico para me voltar a projetos que realmente fariam diferenças pra mim e pra outres.
Não acho que devemos protocolar o trabalho como “ganha pão”. O prazer deve se dar nas articulações profissionais. É uma pena pensar que, talvez no Brasil, ainda que exista, essa investigação ainda é pouco valorizada. Em teoria, talvez, eu tenha escolhido o prazer ao invés da riqueza. Tive oportunidades de trabalhar com as mais poderosas mas abri mão por não me ver presente em nenhum daqueles espaços. E quando veio o HIV, eu tinha duas escolhas, o silêncio e a possibilidade de desestruturar esse mesmo. Escolhi abrir e nada mais óbvio do que colocar meu próprio corpo em questão. Daí se deu na performance. Não sou um corpo acadêmico e nem defendo a academia. Acho que vivemos um declínio acadêmico que não possibilita a vivência das ruas, por exemplo. Defendo a minha investigação e interesse pelo olhar, pela vivência e principalmente pelo trânsito. A academia nos coloca em lugares muito teóricos mas a vivência é o que nos faz ter conclusões plausíveis sobre qualquer assunto. A verdade é que uma precisa da outra e eu escolhi a outra.
Bienal de Cairo (I=I Cairo) Fotos: otimokarater
TLL: Eu me lembro de uma resposta sua sobre estética durante a nossa visita, e tenho interesse especificamente nessa linha de pensamento. Você pode falar um pouco mais sobre isso?
VC: Legal que isso te marcou.
Defendo a estética como forma de informação, mas ainda assim ela fica sublime e aberta para conclusões diversas. Quando penso em arte/HIV, penso em trabalho com profundidade de informação, ainda que já vivemos há muito tempo com a questão do HIV/AIDS, o que se dá numa crescente epidemia é a falta de informação. É uma loucura vermos que ainda não temos políticas públicas efetivas no brasil e acho que a potencialidade vai se dar em novas ferramentas. É aí que entra a arte. Porém, por mais sublime que se apresente, a gente nunca vai conseguir se desvencilhar da informação, ela é o que vai fazer, talvez, um dia, a gente dar conta de introduzir a não conclusão em um trabalho de arte posithiva. Antes disso, defendo que todas as abordagens devam ser baseadas e introdutivas de informação. Esse ao menos é o meu formato de trabalho. Quando também defendo o “discurso popular” como o jeito mais abrangente e efetivo de transformação, eu penso nos meus, na minha tia que mora lá longe, naqueles que não aprenderam a buscar a informação. Somos um país com indução de informação e com altos índices de audiência nos grandes canais de TV, aqui as pessoas tem as TVs de última geração pra assistir a TV Globo, por exemplo. Ainda que já tenhamos acessos globais, estamos longe do domínio da tecnologia e da consciência de buscar fontes que realmente tragam dados concretos.
TLL: Por favor, você poderia falar mais sobre a sua visita ao Cairo (Egito)? Sobre como foi morar lá por um tempo e se envolver com a cause do HIV por lá. Tenho curiosidade sobre qual foi a reação do público durante a Bienal de Cairo.
VC: Ah, o Egito!
A Bienal do Cairo foi o espaço que me escolheu pra abrir a minha condição de posithivo. Antes disso eu estive 2 anos formulando a minha abertura. Ensaiei uma performance que se chama “libertar-ser” com curadoria da Susana Guardado pra um projeto que se chama Prazer é Poder, no Rio, lugar onde contrai o HIV. Nessa performance o meu corpo era apenas um estigma. Os cabelos eram o que viria a definir esse estigma futuramente. Lembro de um amigo e artista maravilhoso que me provoca muito, Tiago Rivado, me falando que era maravilhoso ver em Libertar-ser o quanto eu não sabia o que eu estava fazendo. E era exatamente sobre isso… Eu não sabia qual era o meu sentimento, eu só sabia que era algo que vinha de fora pra dentro e que ele tinha embates diversos. Depois do Egito que eu fui entender que existia narrativa entre libertar-ser e I=I.
Esse convite se deu por intermédio da Monica Hirano (hoje minha produtora) que estava produzindo a bienal e pediu pra mandar meu projeto. Ele foi aceito, consegui por meio de um financiamento coletivo afetivo produzido pelo Gilberto Vieira. conseguimos 10k pra essa viagem.
Cheguei no Cairo no dia do segundo turno que elegeu Bolsonaro, aos prantos e me sentindo culpado por não ter votado nesse dia, mas sabendo que estava me propondo a algo importante. Fiquei mais de 2 horas no aeroporto tendo a minha mala investigada, sem saber nem falar inglês direito. Só falava “I’m an artist” com a carta da bienal na mão e meu único medo era o momento deles pegarem o meu remédio que levei nos frascos originais. A performance já começava ali, se eu fosse interrompido, ela também teria acontecido…
No fim eles ficaram tão entretidos com o figurino que só pegaram o remédio, abriram, viram que estava lacrado e me deixaram ir embora.
Consegui uma assistente lá do Cairo pra me auxiliar na produção, todos os frascos e rótulos foram produção local. Os frascos foram até que fáceis de achar, já os rótulos tivemos que andar por pelo menos 4 gráficas que não queriam imprimir por conter as palavras “gay” “HIV” e “AIDS” no conteúdo. Todas palavras proibidas até de mencionar naquele país. A assistente teve que falar que era pra um trabalho de faculdade. O corte dos rótulos vieram cheios de risadas e reprovações dos caras que cortavam e a performance foi um sucesso. Mesmo que ainda sem muito formato por ser a primeira, ela foi censurada, não pude ficar sem camiseta e tinham policiais filmando todos os movimentos da abertura da bienal. Ela estava toda em inglês então acho que as chances de ser mais censurada diminuíram. Nunca antes tinha me visto sendo observado por tanta gente, lembro até de uma criança me oferecendo coisas pra beber e me ajudando a tirar os rótulos, foi forte! Durou 3 horas, quase que a abertura toda e eu sentia que quem entendia tinha uma mistura de dó com compaixão. No fim, alguns homens vieram me abraçar e agradecer por aquele movimento. Suponho que eles eram positivos. Eu não me envolvi com as causas do país, não deu tempo, tentamos um contato com a UNAIDS de lá mas não teve sucesso. Mas pra mim, enquanto proponente, estar ali levando aquelas palavras que não podem nem ser faladas impressas em 740 frascos de remédios, já me fez ter sentido.
Naquele ano de 2018 o Egito tinha dobrado a quantidade de infecções durante toda a história da epidemia lá. Foram 11k novas infecções. Fiquei exatamente 1 mês lá, dei uma circulada, achei uma loucura, nunca antes tinha vivido uma cultura tão diferente da minha. Fiz uma pegação, os gays em grande maioria não moram lá por conta da proibição e são todos bem fechados. O aplicativo Grindr ja vem com uma notificação dizendo para tomar cuidado com “policiais disfarçados”. Fiquei com medo e preferi não me envolver. Imagina se fosse pego sendo gay e ainda por cima posithivo. Risos.
TLL: Você teve uma exposição no Rio, no Centro Cultural Hélio Oiticica. Você poderia falar mais sobre isso? Eu conheço um pouco (muito pouco:) sobre ele … E na minha cabeça ele e a prática dele têm umas similaridades com a sua. É imaginação minha? Outras pessoas também dizem isso? E para você, existe uma relação?
VC: A performance no HO, foi a última atividade deles e minha de 2019. Eles me cederam o espaço e eu consegui que a produção fosse financiada por uma amiga, Silvana Bahia. Por ser uma instituição pública e pelo Rio/Brasil estar passando por momentos de sucateamento e dificuldades de estímulos à cultura, tudo estava bem precário. Estavam quase sem profissionais, nem dinheiro pra faxina eles tinham. Muito triste ver um lugar que sedia e dá abertura, principalmente para artistas periféricos, se encontrar naquele estado. Mas ainda que com dificuldades, a falta de estrutura deu força e gerou um novo caminho pro meu trabalho. Tivemos que imprimir os rótulos em papel adesivo normal, isso impossibilitou a retirada fácil dos rótulos e promoveu uma necessidade coletiva dos expectadores. Quando me vi propondo a todos que eles tirassem as informações contidas nos rótulos, pensei: ‘uau, estou inserindo informações neles e junto comigo estão des-rotulando.’ Tenho dito que essa foi a ação coletiva mais potente que eu me vi proponente. Tanto que agora teremos as 2 formas de rótulos, em papel vinílico, que facilita tirar e o adesivo de papel normal. No MAM-SP, por exemplo, eu retirei todos os rótulos e a interação se dava no meu movimento de colar nos expectadores. Ainda consegui reforçar a conclusão de que “As sequelas, os resquícios e a proliferação do vírus do HIV/AIDS sempre vai se mostrar fixado e mais presente nos territórios onde se tem precariedade, falta de acesso e de políticas públicas efetivas.
Estamos falando de (falta de) estrutura!”
Esse texto foi legenda de uma foto que tirei minutos antes de eu começar a limpar os resquícios da minha performance na segunda-feira depois de ter sido advertido pela instituição por ter deixado e não ter limpado sabendo das condições deles.
Já as similaridades com os trabalhos do Hélio, eu agradeço. Nunca antes tinha parado pra pensar sobre isso, me identifico no seu modo subversivo anarquista e vanguardista. Mas acho que enquanto artista, minimamente politizado, todos aqui levamos um pouco do Helio. Ele é pro Brasil uma das maiores referências que temos. Eu queria mesmo é ter vivido com ele em vários momentos. Risos!
Tenho uma certa dificuldade em colocar minhas referências em questão. Quando falo sobre meu corpo e sobre arte/HIV é uma coisa que está tão ligada e se torna tão genuína que óbvio que não existe corpo sem referência, mas minha construção se baseia na necessidade e na observação de outros corpos como o meu, basicamente.
Esclarecimento sobre ‘juntar pessoas,’ após o surgimento do COVID19:
“Oi Todd. É mais ou menos a mesma coisa sim. Eu só tô ainda pensando em como eu vou agir com esse projeto. A ideia é que a gente consiga articular pessoas e artistas positivos a propor novos olhares, um olhar mais positivo mesmo, sabe. Mas eu acho que isso também, agora pensando, pode ser uma interrupção de formatos, de outros corpos. Então eu acho que a liberdade nessa proposição, ela tem que ser livre mesmo, não da pra gente induzir outros corpos a fazer outras coisas. Ela tem que ser livre. Mas eu acho que pensar nessa nova linguagem de trazer menos dor e trazer informação com um pouco mais de… Não sei explicar pra você. Mas sim, tudo parte do mesmo. Eu tô agora aqui escrevendo parte desse projeto inclusive. Mas é meio isso, é a mesma coisa, mas é pensar em novos formatos sabe, que não seja com dor, que não seja das pessoas ficarem tocadas. Eu acho que a gente precisa focar agora em outros lugares.”
TLL: Hi Vinicius. When we first met you told me you have three projects or perhaps work in three overlapping areas. Can you say something about each and maybe how they are all connected?
VC: Yes, today, asides from [I=I] – a work that introduced me to the milieu of performance, I have 2 projects:
The first is that in the next 10 years, I intend to hack the other 47 countries that somehow restrict my entrance/permanence as a positive body, regardless of serological state. This opening to this took place in Egypt.
We still don’t know exactly how my action will be, but for now we know that it will be a visit with interviews and that my stigma (the hair pieces) will be occupying the city. As if it was explicit that although there are entry restrictions, Aids exists everywhere. The second is a 3-month long project, with still no lead, which will promote meetings from invitations displayed on street posters and distributed throughout the city. In the meetings I intend to propose content that addresses positive matters, such as films, newsletters, performances, and whatever else happens, with a focus on Brazilian content, and in the end I propose a roundtable along with a questionnaire that will create data for a performance on the reproduction of bodies.
The work that already exists is the I=I, which is annual and gradual, and each year more than 365 flasks are added, pertaining to my days of treatment ever since I began it.
Besides these two, I have another project that is still under speculation which is a “posithive cure pain laugh”, for which I invited positive artists to propose new perspectives and possibilities of visions not laden with sadness and death. I believe the time is arriving for us to think about the positive fight with less pain and more strength.
TLL: Actually I’d luv to understand better your artistic practice in general (pertaining to HIV and otherwise). Do you happen to have an artist statement or reflections on your ‘artistic journey’ so far? Please feel free to change the questions to suit the way you want to respond. I’m always interested to know how artists differentiate between their work (or practice) and life in general.
VC: Definitively, I have no strategy or departing point. My life was always defined by chance. I was never able to plan too many things, maybe for the lack of money or even due to my personality.
At work, I chose to research non-normative bodies in art, fashion and cinema. I began this research in 2010, when I gave up on several occasions the opportunity to work in the white/rich milieu in order to focus on projects that would really make a difference for me and others.
I don’t think that we should protocol work as being a “bread winner.” Pleasure has to arise in professional articulations. It is a pity to think that, maybe in Brazil, although it exists, this research is still little valued. In theory, maybe, I chose pleasure instead of wealth. I’ve had the opportunity to work with powerful people but gave it all up because I was not seeing myself present in any of those spaces. And when HIV came up, I had two choices, silence or the possibility of dismantling silence itself. I chose to open up, and nothing was more obvious than to put my own body in question. That is where performance came from. I am not an academic body nor do I even defend academia. I think we are living an academic decline that does not allow as a possibility street experience, for example. I defend my research and my interest in the gaze, the experience, and mostly in the transit. Academia puts us in places that are too theoretical, but experience is what makes us have plausible conclusions about any subject. The truth is that one needs one another, and I have chosen the other.
TLL: I remember something you said when we met about aesthetics in relation to HIV. I’m particularly interested in this line of thought. Please expound:
VC: It’s cool that that left a mark on you.
I defend aesthetic as a form of information, but even in this way, it is kept sublime and open to various conclusions. When I think of art/HIV, I think of work that has a depth of information. Although we have lived for a long time with the matter of HIV/AIDS, what brings us to a growing epidemic is the lack of information. It is crazy to see that we still do not have effective public policy in Brazil, and I think that the potentiality will happen through new information tools. That’s where art comes in. Yet, however sublime it may present itself, we are never going to be able to free ourselves from information, it is what will make us, one day, think of introducing a non-conclusion to a positive work of art. Before this happens, I defend that all approaches must be based on, as well as introduce, information. At least this is my work format. While I also defend the “popular discourse” as a more comprehensive and effective means of transformation, I think of my people, of my aunt who lives far away, of those who did not learn to search for information. We are a country with the induction of information and with high audience rates in big tv channels, here people have the latest TV models to watch Globo, for example. Although there is global access, we are far from technological expertise and from having the awareness to search for sources that really bring us concrete information.
TLL: Can you tell me more about your trip to Egypt for the Cairo Biennial? Did you stay long and would you say that your performance piece was seen outside of the frame of the government-sponsored art event? Was your performance billed explicitly as pertaining to HIV? I’m curious about the public’s reaction to your work.
VC: Oh, Egypt!
The Cairo Biennial was a space that chose me to open up by condition as posithive. Before this I spent 2 years formulating my opening up. I rehearsed a performance that is called “Libertar-ser,” under the curation of Susana Guardado for a project that is called Prazer é Poder, in Rio, where I contracted HIV. In this performance my body was only a stigma. The hair pieces were what would come to define this stigma in the future. I remember a friend and wonderful artist who provokes me a lot, Tiago Rivaldo, telling me that it was amazing to see in Libertar-ser how much I had no idea what I was doing. And it was exactly about that… I did not know what I was feeling, I just knew that it was something that came from the outside in and that it underwent several clashes. After Egypt I learned that there was a narrative between Libertar-ser and I=I.
This invitation happened through the Monica Hirano (my producer today) as an intermediary, who was producing the Biennial and asked me to send the project. It was accepted, I was able to do it through a collective affective financing by Gilberto Vieira. We were able to raise 10k for this trip. I arrived in Cairo in the day of the second round of elections that elected Bolsonaro, I was in tears and feeling guilty for not having voted on this day, but I knew that I was proposing myself to something important. I spent more than 2 hours in the airport with my suitcase being investigated, with me not knowing how to speak English well. All I could say was “I’m an artist,” with the Biennial letter in my hand. My only fear was of them grabbing my medicines that I took in their original flasks. The performance was already starting there, if I had been interrupted, it would already have happened…
In the end they were so entertained by my costume that they only took the medicine, opened it, saw that it was sealed, and let me go.
I was able to get an assistant in Cairo to help me with the production, all of the flasks and labels were locally produced. The flasks were even easy to find, but for the labels we had to go through at least 4 print shops that did not want to print them out because they contained the words “gay”, “HIV”, and “Aids.” These are all words that are prohibited from even being mentioned in that country. My assistant had to say that it was a work for college. The guys cut up the labels while laughing a lot and being disapproving of it. The performance was a success. Although it still did not have a lot of format, for being the first, it was censored, I was not allowed to be shirtless, and there were cops filming every movement at the Biennial opening. It was all in English, so I think that the chances of it being censored diminished. I had never before found myself being watched by so many people, I even remember a child that offered my things to drink and helped me remove the labels, it was strong! It lasted 3 hours, almost the entire opening, and I felt that those who understood it felt a mixture of pity and compassion. In the end, some men came to hug and thank me for that move. I suppose that they were positive. I did not get involved with the country’s causes, I did not have time, we tried to get in contact with the UNAIDS there, but without success. But for me, as a proponent, to be there and to be taking those words that can’t even be said out loud, printed onto 740 medicine flasks, already gave it meaning to me.
In that year, of 2018, Egypt had doubled the amount of infections during the entire history of the epidemics there. There were 11k new infections. I was there for one exact month, walked around, thought it was all crazy, I had never experienced a culture that was so different from mine. I had a hook up there, most of the gays don’t live there due to the prohibition and they are all very closed off. The Grindr app already comes with a notice to be careful with “undercover cops.” I was scared and preferred to not get involved. Imagine if I was caught being gay, and even more, being posithive? [Laughs]
Centro Cultural Hélio Oiticica (I=I Rio de Janeiro) Fotos: Daniel Toledo
TLL: You recently had an exhibition in Rio de Janeiro at the Hélio Oiticica Cultural Center. Can you say more about that? Was it the same piece you performed in Cairo? I know a little bit about the work (and style) of Hélio Oiticica, and in my head I can imagine similarities between his work and yours. Is this just my imagination? Have others made this comparison? And, well, do you make a connection yourself?
VC: The performance at HO was their and my last activity in 2019. They conceded me the space and I was able to have the production financed by a friend, Silvana Bahia. For being a public institution, and because Rio/Brazil is going through moments of scrapping and difficulty in the promotion of culture, everything was very precarious. They were almost without professionals, they didn’t even have money for the cleaning. It is very sad to see a place that hosts and gives exposure, especially for artists from the periphery, to find it in that state. Even with difficulties, the lack of structure gave strength and generated a new path for my work. We had to print out the labels on normal adhesive paper, which made it impossible to easily remove the labels, and promoted a collective necessity by the spectators. When I saw myself proposing to everyone that they remove the information contained on the labels, I thought: “wow, I am inserting information onto them, and they are un-labeling together with me.” I have said that that was the most potent collective action that I have found myself being a proponent of. So much so that we will now have the 2 types of labels on vinyl, which facilitates the removal of the normal adhesive paper. At MAM-SP, for example, I removed all of the labels and the interaction took place in my movement of gluing it onto the spectators. I can still stress the conclusion that “The aftermath, the remnants, and the proliferation of the HIV/AIDS virus will always reveal itself as fixed to, and more present in precarious territories, where there is a lack of access and effective public policies.
We are talking about a (lack of) structure!”
This text was the caption of a photo that I took minutes after arriving to clean up the remnants from my performance on Monday, after being adverted by the institution for having left and not cleaned up, knowing their condition.
Now, regarding similarities with Hélio’s work, I thank you. I had never stoped before to think about this, I identify with his subversive anarchist and vanguardist ways. But I think that like any minimally politicized artist, we all take a little bit from Hélio. He is, for Brazil, one of the biggest references we have. What I really wanted was to have lived with him on many occasions. [Laughs]
I have a certain difficulty putting my references in question. When I talk about my body and art/HIV, it is something that is so interlinked, and it becomes so genuine, that obviously there is no body that has no reference, but, basically, my construction is based on the necessity and observation of other bodies like my own.
Post-COVID19 outbreak clarification on ‘getting people together’:
“Hi Todd. Yes, it is sort of the same thing. I am still thinking about how I’m gonna act in this new project. The idea is that we articulate positive people and artists, for them to propose new outlooks, a more positive one. You know, now that I was thinking, this can also be an interruption of formats, of other bodies’. So I think that liberty in this position really needs to be free, we can’t induct other bodies into doing things. It has to be free. But I think that we need to think about this new language that brings less pain and brings more information with a little bit of… I don’t know how to explain it to you. But yes, it is all part of the same thing. I am even now over here writing up this project. But that’s kind of it, it is the same thing, but it is to ask for new formats, one that isn’t all about pain, or all about moving people. I think that we need to focus on new areas.”
Museu de Arte Moderna (I=I São Paulo) Fotos: Carol Araujo
[*The Arts-Policy Nexus, a Health-Focused Artist Roundtable (A.RT), and this policy paper are all ideas – a program and two of its byproducts – I came up with as an artist and then found institutions with the capacity to help me realize. The goal of this policy paper (originally published by the World Policy Journal on June 27th, 2017) is to keep artists central to the policymaking process. xo Todd]
Citizen voices are increasingly recognized as essential to forming policies and promoting health in inclusive, holistic ways. Health policies are starting to incorporate a broader set of factors that contribute to health, while health-care providers are embracing active participation on the part of their clients. As the scope of policy and health expand, artistic practice and thought are ideally situated to become tools to help us embrace broader notions of individual and community health, along with our (perceived and actual) ability to take action on behalf of ourselves and our communities—allowing us to re-imagine approaches to health and policymaking in the process.
On May 1, 2015, an Artist Roundtable (A.RT) hosted by World Policy Institute’s Arts-Policy Nexus brought together 11 like-minded artists for a conversation focused on the relationship between health, wellness, and agency. Focusing on each participant’s definition of personal and community power, policy (who makes it, and how), and perceived impacts of their own work as artists in the community, the discussion sought to explore the ways in which communities, artists, and policymakers engage in processes pertaining to health and its varied determinants.
Seeking to answer the question,“What would a policy that incorporates our ideas of medicine look like?” this group began to explore an expanded view of wellness along with a wider definition of policy and those ultimately responsible for its creation, identifying a need to further explore the intersections between policy, health, and artistic thought and practice. In response to this need, Canadian-based organization Musagetes commissioned A Re-imagination of Policy and Health: Toward the Creation of an Arts/Health/Policy Nexus, by Nicolle Bennett, as part of the ArtsEverywhere.ca online platform and its related projects, hoping to demonstrate that shifts in thinking about our approaches to health and health policy can lead to concrete possibilities and guidelines for re-imagining the world.
[*A few years back, I created a meeting concept called Artist Roundtable (or A.RT) … I want to resuscitate this particular discussion on health and wellness in order to share a unique policy paper that came thereafter as byproduct. This article was originally published by the World Policy Journal on June 9th, 2015. xo Todd]
What would a policy that incorporates our ideas of medicine look like?
On Friday, May 1, Artist Roundtable (A.RT) sought to answer this question during its third event, hosted by the World Policy Institute’s Arts-Policy Nexus. Developed by Todd Lester, director of Arts-Policy Nexus, A.RT is an approach to bridging different disciplines in creative work and policy-making as well as addressing crucial issues from varied directions.
Since A.RT’s foundation in 2014, four roundtables have taken place in Guelph, Canada, Sao Paulo, Brazil, New York, U.S., and Vancouver, Canada. The topics of discussion range from climate change, to water, health, and new economies—with more on the way. The May 1 event, convened by Lester along with colleagues Nicolle Bennett, Program Director for Feel the Music!, and Patrick (Pato) Hebert, Associate Professor in the Department of Art and Public Policy at Tisch School of the Arts at NYU, brought together 11 like-minded artists for a conversation focused on the relationship between creativity, health, and wellness. The discussion further sought to explore how the relationship between artists and policymakers can help resolve localized health issues, how artists can better engage in this process, and the concrete benefits they can offer to the health field.
As the work of many invited to the conversation can attest to, art is a form of policy in and of itself. The arts are a representation of culture and society voiced through words, paintings, actions, and performance that can often shape the direction of policies long before they develop. In many cases, the connections and channels of communication that the arts provide may be more effective than traditional means of communication at conveying messages. In seeking to answer the question “what would a policy that incorporates our ideas of medicine look like?” the artists at the May 1 event offered not only an expanded view of wellness, but also a wider definition of policy and those ultimately responsible for its creation.
As the discussion opened, the group spoke of the necessity of art in reshaping our understanding of health and well-being. More often than not, health is an intervention rather than an intravention; it is fundamentally reactionary. Throughout the afternoon, one phrase mentioned by those in the roundtable in particular stayed in the minds of those participating: “Nothing about us without us”—the latter ‘without us’ clause symbolizing the engaging and connective capacity of art and its application to health policy.
“Art needs language, but also gives language,” said Grace Aneiza Ali, founder of OF NOTE, a magazine on how creativity affects policy, “speaking in an ordinary way by extraordinary means is more effective in outreach.” Art gives language an avenue to maneuver with ‘us,’ whoever ‘us’ may be.
Ali went on to explain the divorce of spirituality from life, and how the separation affects our ideas of health and wellness. Spirituality, she said, is not the same as religion. Spirituality is defined as a general connection with those around you that is not necessarily initiated through a ritual. Because art can be practiced and enjoyed across social groups, it allows people to convey a message to a wider audience without having to be validated by an authority.
In its utilitarian and universal nature, art also serves as a platform for advocacy and activism, often grabbing the attention of those otherwise uninterested or unaware. One participant, Richard Hofrichter, Senior Director at Health Equity NACCHC, defined cultural activism as “representing a way of giving voice to people in their own language and images, derived from historical memory and current experiences, that enable grassroots groups to serve as a face of change.”
There are also more direct ways to promote health and well-being through creativity. Nelson Santos, Executive Director of Visual AIDS, leads a collective that uses art to fight the spread of AIDS by provoking social interaction. One such project (“Self-Enforced Disclosure” by Greg Mitchell, 2007) features a man displaying a tattoo on his arm resembling a branded cattle, identifying himself in a somewhat contradictory playful font as being HIV-positive. The rough edges of the insignia symbolize the necessity of revealing such intimate information, yet the arcade game lettering and placement on a human body suggest a personal ownership of the HIV condition.
This more direct form of activism expressed in visually provocative images fosters a dialogue both with and among its audience. Using visual art to stir discussion brings those disconnected from important issues into a conversation that fosters better-informed points of view.
Members of the community can find therapeutic benefits from engaging themselves in creative activity. For instance, taking a simple “time out” from a busy day to draw and color can bring about a sense of youthful serenity in adults. Lacy Mucklow, the author of Color Me Happy and Color Me Calm aims to alter the energy and mood of adults with her new coloring books. Coloring, which has a proven calming effect on children, renders the same results with individuals of almost any age. “Relief and healing come from this time out,” Mucklow says. Some simple “you” time with a coloring book can help calm and re-center your thinking and attitude.
Carlos Rodriguez Perez, the Director of Wellness and Recovery Division at Kings County Hospital Center, also recognizes the necessity of art and interaction in promoting wellness, as well as the inherent link between therapeutic activity and social change and justice.
In partnership with the Beautiful Distress Foundation, Kings County hosts artists in its progressive arts therapy programs. With the help of resident artists such as Aldo van den Broek, this partnership is expanding the traditional definition of artist residencies and, in the process, the perceptions of mental health institutions and patients within the surrounding community. In a follow-up site visit to the program, A.RT participants were able to learn about the varied roles of artists within this space: as therapy providers, co-creators, and community engagers, all with the goal of reducing the effects and stigma of mental illness.
Even outside the context of experimental institutional partnerships, artists play a myriad of roles. Creative connectors, bridge-builders, providers of language, and stimulators of imagination—artists can speak to that which makes us uniquely human and connects us to others. In this regard, not only is art a tool to promote wellness for the individual, as in the case of coloring books, but also a way to promote advocacy and cultural dialogue to confront larger societal issues—as works like “Self-Enforced Disclosure” seek to achieve.
As the roundtable came to an end, the participants agreed on one thing: that the collaborative process can and will continue to explore ways that art and its creators can contribute, advocate, and co-create with both communities and policymakers surrounding issues of wellness and health. As the saying goes, “Nothing about us without us.”
Jordan Clifford is an editorial assistant at World Policy Journal.
‘Stealing’ the LUV Game is a bit easier than Hoffman’s book. It is free to begin with. I tell the story of how the LUV Game came about first as an idea from a young Egyptian designer in a description of ACT I, considering how one might discuss (or signal a safe discussion on) HIV in a place like Cairo … starting with a sticker of a game tile he envisioned on the back of a laptop…something that would ‘call out’ to someone entering a busy cafe. Something iconic (a brand of sorts) but coded…like something one learns about on social media but that isn’t explicit in form or words. From the original idea had in Port Said along the edge of the Suez Canal, the game spilled out and its pieces (or tiles) and simple instructions in 10 different languages are available online for download and printing in B/W or color. The game has been test-played in São Paulo during the December 1st (2019) AIDS Walk in Portuguese; in Grenoble with Ankh Association in French and Arabic; and in Bogotá at the culmination of the Luciérnagas Laboratory in Spanish.
While the LUV Game is not the end game of the LUV project, we do hope that it is used far and wide as an icebreaker for discussing HIV and related stigmas. One idea is that we offer it to an institution to help us scale up (like a research outfit, university, NGO or UN agency), and another is that we work with global techies to make an open source online version, something like the Robyn game / app. We’d LUV for you to ‘steal it’ first and tell us about your particular heist. Let us know how we can ‘distract the guards’ and we’ll lend a hand:)
[*A longer EN language interview is available below for download; Todd Lanier Lester interviews Adriana Bertini for LUV.]
TLL: We met first in Barcelona at the 14th International AIDS Conference in 2002. I don’t remember too much about the trip, except that I was presenting a poster with a colleague on community sensitization work on HIV/AIDS we’d done together in the East Province of Cameroon as US Peace Corps volunteers. Again, a very long time ago.
I recently wrote about my first HIV work on the LUV site, and I guess it had to do with being ‘plopped’ down in a location for which it was an urgency. I reacted to my surroundings, not so different than how I have reacted to urban issues here in São Paulo. For me it is about responding to what is around me, and relates to my personal notion of what you do when you live in a place. The only difference I can think of is that I now call myself an artist. I began this HIV-related work 20 years ago, and before I myself contracted HIV.
Since you’ve been doing this work for just as long, I wanted to first say thank you for your dedication, and ask you to explain how you started and what moved you to action in what you term ‘artHIVism’ (I noticed in your e-mail signature:)
AB: O Trabalho com arte aliado à Aids nasce de uma intervenção artística em Porto Alegre em 1994, um convite do ator Fabiano Menna para uma performance, fui literalmente fisgada pela causa. Em 1995 entro para a ONG GAPA em Florianópolis como voluntária. Ali eu cuidava de crianças vivendo com HIV, a maioria de transmissão vertical. E um dia por acaso eu ganho do secretário da saúde uma caixa com 144 preservativos vencidos e ali começa o meu processo de investigação artística sobre a matéria prima e como fazer arte com este objeto para chamar a atenção para a prevenção, falar de sexualidade e os perigos do prazer sem advogar a abstinência.
Com o passar dos anos, estudando e fazendo experimentos artísticos, o trabalho de arte passa por uma evolução natural, onde eu busco através da manifestação artística integrar ativismo a arte, saúde e educação.
Inquieta com a questão da adesão à TARV, principalmente com jovens dou início à pesquisa de outros materiais para promover a adesão, como medicamentos, embalagem e objetos que remetem à saúde sexual, e há dois anos criei esta palavra artHivismo como um novo conceito, não sou ativista sou uma artHivista porque relaciono minha arte diretamente com o HIV.
TLL: I’ve read your Creative Workshop manual (see download below), and a bit of the background of condom art. Do you make other works outside the theme of HIV? Do you see yourself more as a public health activist, an artist or both?
AB: Eu trabalho paralelamente com outras questões sociais na arte. Trabalhei por alguns anos na Anistia Internacional em Bruxelas como Strong Voice e Artivista para o Fim da Mutilação Genital Feminina e em outras causas sociais como câncer de mama, tráfico de órgãos, etc… Meu projeto futuro é trabalhar a Fome e escolhi para a representação artística o Pão como alimento-referência em todas as culturas globais. Eu me vejo como uma artista social.
TLL: Adriana, you recently visited Los Angeles and UCLA I believe. You were there doing HIV-related art education, or this is what I remember from our brief discussion. Let’s use your trip to LA as a way to discuss your work. What did you do while you were there? Are there specific organizations you’d like for us to know about? Would you say that this trip is typical for you?
AB: Eu fui convidada como Artist in Residence por três setores da UCLA:
Trabalhamos em parceria desde 2006. E este convite foi para várias ações artísticas que envolveu:
Public Speaker, Workshop Público no dia comunitário do Fowler Museum e um workshop intensivo chamado de Fiat Lux Class (Creative Workshop).
No Condom Art Workshop (Creative Workshop) intensivo trabalhamos a teoria do artivismo, a construção do diálogo crítico e debates sobre saúde sexual, métodos contraceptivos e como banir o estigma.
Foram diversas dinâmicas usando poesia, desenho, fotografia, vídeo, performance para a construção do trabalho final, uma apresentação.
O conceito do workshop foi como banir estigma e pudemos criar coletivamente um novo diálogo sempre trabalhando técnicas de arte com camisinha, recorte, colagem, pigmentação, costura, modelagem.
É uma oficina muito rica porque além dos temas propostos e das técnicas artísticas aprendidas, levamos para as questões mais pessoais que são as experiências vividas na sua sexualidade, e colocar isso à tona dentro da classe fortalece os jovens e os empodera para suas escolhas mais conscientes.
TLL: And, lastly, what’s next? Importantly, I’d luv to know your vision for HIV-related work in São Paulo where we both live.
AB: Eu acredito muito na educação sexual de forma transversal nas escolas e na universidade, e volto de Los Angeles fortalecida a procurar mais espaços de diálogo em São Paulo, por mais difícil que seja e percebo que tanto os jovens americanos, brasileiros, europeus e asiáticos têm a mesma demanda, precisam de informação de forma criativa, contemporânea, rápida e atual como resposta à epidemia, o diálogo lúdico, moderno e a arte tem este poder de tocar mentes e corações para uma possível transformação.
LUV: Thanks so much for taking time to share your work!
Image taken at Oct 25 (2019) Luciérnagas performance
Before the presentation we did some in situ rehearsals, although they were never enough, we did them. The Botanical Garden is a very bureaucratic institution and it was difficult to manage the space for more preparations. For these last sessions we got together Eudes Toncel, a Guajiro Colombian artist, writer, and anthropologist, with special interest in the themes of gender and afro cultures. Almost all of us arrived in time for the presentation. Laura Figueroan, a very good friend of mine, came over to help us with the details, and brought us ski masks, which were intervened upon with fancy black stones, which went really well with the costumes. We had been cooking up the LED lights in the last weeks, with the help of Duvan Puerto, who arrived in the project thanks to Juan Sebastián Jaramillo and the creativity and technology agency that they worked at. Megan Cross Star, a member of the laboratory, was one of the people who had the most interest in the process, and especially in her costume for this night. She brought jewelry, make up, and was truly very elegant. As it was the night at the Botanical Garden that is open and free, many people came. More than we expected. After 6 months of planning and speculation , the day had arrived. It rained a lot that week, but luckily this day was clear, and both the members of the lab, as well as the visitors, were all able to calmly visit the Botanical Garden.
The time for the performance arrived, and we were ready. Each one went to their specific spot, where they would do their work in the dark jungle. They started to do their movements, in slow, subtle dances, while the the little LED lights were like fireflies. My instruction to them was: you are the containers of the fireflies, roaming through the jungle. In anyway, we had never been there at night, so there were places that I had expected to be especially dark, but weren’t. This made it so that each one had to run to find his/her place of work, and to assure me that they were placed in the darkest possible point, as it was only there that we could notice the magic of the tiny lights floating in space. I also went over the speed of the movements for each one, and the way in which they produced the sounds. Camilo arrived at the garden late, although I had warned him about it. So I had to leave to take him to the dressing room at the entrance, and give him the immediate instructions so that he could join in with the rest. When we returned from the jungle we saw the center, where we had planned to end the action, where all of the bodies from the performance met each other. In pairs, we did a reflection exercise that we had learned in the session that was dedicated to the exploration of the body, conducted by Juan Manuel Mosquera, at this same location, some months ago. Now that we returned there, it turned out that the space was full of people, and the action was difficult to appreciate. I did not have another option but to ask the people to please open up some space, which I was later told interrupted a bit the mystique of the moment, but I had to do it. This third part of the action, that we call the partitura (score) – the apareamento (pairing up) – consisted of doing this subtle reflection dance in pairs, while the volume of the whistles intensified up to the point in which the sound would be cut, after my signal. Friends, family members, and partners came to see us.
The weeks before the presentation, we had many gatherings, generally dedicated to the designing of the wardrobe, to sewing, and to connecting the LED lights though the conducting wires on the black hoodies. It was a complex process, we had to learn the positives and the negatives, LilyPad, LED, batteries with different durations and strengths. For me it was a great challenge, as technology has not been my forte. To get closer to these notions was a useful thing to learn. We met at my house almost always during the weekends, all of us cooking and talking until the late hours of the night.
Todd Lester came from São Paulo, and I hosted him at my house. Two days before we were printing publications with the information on his project Luv ’til It Hurts, about art and HIV. Todd’s enthusiasm has been defining in all of the project’s development, with the help of Paula Querido Van Erven, Brazilian, who translated the previous reports about the lab, and they published it on Luv ’til It Hurts’ online platform on art and HIV. Todd, during the days of the performance, organized an event at El Parche Artist Residency, where he presented his personal project as an artist, a table game that invites people to talk about, discuss, and express themselves openly on matters related to HIV/AIDS.
The sound element appeared in a magic way. We had already talked a lot about what could be the sound that accompanied the action, in the session dedicated to sound art, delivered by Mauricio Rivera. We had decided that the best would perhaps be to find forms of sounds emitted from the body, that are natural, or chants, simple instruments, something like that. But up until this point we had not succeeded in solidifying what it could be. Some weeks before the presentation, there was a tutoring session with the Mexican artist Tania Cadiani, following up from my 10-month residency in Flora ARS NATURA. Tania told me: “But have you listened to the chant of the fireflies when mating?” I told her that I hadn’t. I had consulted the literature on fireflies, seen videos and photos, illustrations, poems. But none of them had mentioned, that I recall, specifically the sound of the fireflies, perhaps because what was more evident was to think of the lights that they emit. At last, I was rewatching videos of fireflies while mating, and listening attentively to their chants, and it fit like a glove. The sound element, now under this guiding pole, would come to be an essential part of the performance. Some days afterwards, I went to buy artisanal whistles at the ‘Pasaje Rivas’ and I found one made out of clay in the shape of little chickens, that, when played in unison and in the dark, could sound just like the melodious screeches that the fireflies emit during nocturnal courting.
After the presentation, Mario Andrés González, a member of the lab and part of the board of the Kuir cinema festival in Bogotá, invited us over to his house, where we ordered some pizza and beers. We were almost all members of the lab, plus some friends and family. We were talking until extremely late, asking ourselves how we felt throughout the night. Some members of the lab had gone that night to shoot videos at the very dark parts of the forest in the Botanical Garden, and brought very interesting results and good ideas. We thought of how it would be to appear as a group with our LED light costumes in another space, for example.
Immediately after the presentation, I had in my head a question about the nature of the aesthetic and the action as a conclusion of the lab. Because, the lab, whether the performance succeeded or not, let’s say, was effective, worked, the ten sessions took place, all of the invitees came over, ties of affection were created between the members and participants, extremely important questions and ideas on the relationship that each one had with HIV came up, as well as of its relation with the current Venezuelan migration crisis. The question that kept surrounding me every once in a while, in an accelerated way, because it is possible that the performance may have been, aesthetically, a bit chaotic (it is also possible that it wasn’t, but let’s just say that some precisions escaped us, over which I would have liked to have had control), for example, there were a lot more people than we expected, the lights could not be seen as much as I would have liked because it was not dark enough for these to accurately have the imagined effect. But besides this, the action worked, the bodies spread out throughout the jungle, the LED lights were turned on, we emitted the sounds that alluded to the fireflies’ chants while mating. I have ended it by concluding that the important thing, as far as my interest as an artist, with regards to aesthetics, perhaps speaking specifically about this work, is more about the content, and that the aesthetic that prevails above the beauty or lack thereof in the performance, is the aesthetic of collaboration. It is an aesthetic that is beyond the visible, that can perhaps even be evidenced through reports, pictures, and videos of the process, but that it is only possible to prove by speaking to one of the members of the lab. What is even more difficult of proving, being myself a member of the lab, is that it is possible that the aesthetic only lives in ourselves, because it was our bodies that the lab transformed. Indeed, there were changes in our attitude and thinking after this process, and this is, in my opinion, the aesthetic dimension that matters in appreciating this project as an artistic work.
Previo a la presentación hicimos algunos ensayos in situ, nunca suficientes pero los hicimos. El Jardín Botánico es una institución muy burocrática y era difícil gestionar las preparaciones. Para estas últimas sesiones se sumó Eudes Toncel, artista, escritor y antropólogo con interés especial en temas de género y culturas afro. A la presentación llegamos casi todos a tiempo. Laura Figueroan vino a ayudarnos con detalles, nos trajo los pasamontañas intervenidos con piedras negras de fantasía. Las luces LED las habíamos estado cociendo en las últimas semanas con la ayuda de Duván Puerto que llegó al proyecto gracias a Juan S. Jaramillo y a la agencia de creatividad y tecnología donde trabajaban. Megan Cross Star, miembra del laboratorio fue una de quienes más le puso interés al proceso y especialmente a su traje para esa noche, trajo joyas y maquillaje.Cómo era noche abierta y gratuita en el Jardín Botánico vino más gente de las que esperábamos. Después de 6 meses de planeamiento y especulación el día había llegado. Llovió mucho esa semana, pero afortunados, ese día y noche estuvo despejado y eso ayudó a que tanto los miembros del laboratorio como los visitantes pudieran venir tranquilamente.
Llegó la hora del performance y estábamos listes. Cada une se fue al lugar específico donde trabajaría en la selva nocturna. Empezaron a hacer sus movimientos, lentos, danzas sutiles, mientras los bombillitos LED hacían de luciérnagas. Mi recomendación era: son contenedores de luciérnagas deambulando por la selva. De todas formas nunca habíamos estado allí de noche así que había lugares que yo esperaba que estuvieran más oscuros. Eso hizo que debiera correr a buscar a cada uno a su sitio de trabajo y asegurarme de que se ubicaran en el punto más oscuro posible, pues solo ahí se podía percibir la magia de las lucecitas flotando en el espacio. También con cada une repasé su velocidad de movimiento y la forma en que estaba produciendo el sonido. Camilo llegó tarde aunque lo había advertido, debí ausentarme para llevarle el vestuario a la entrada y darle las instrucciones inmediatas para que incorporarse. Cuando regresamos a la selva vimos que en el centro, donde habíamos planeado el final de la acción, donde todos los cuerpos del performance se encontraban en parejas y hacían un ejercicio de reflejo que aprendimos en la sesión dedicada a explorar el cuerpo dirigida por Juan Mosquera allí mismo hacía un par de meses. Cuando regresamos el espacio estaba lleno de gente y la acción era difícil de apreciar. No tuve de otra que pedir a las personas el favor de abrir espacio y moverse un poco, lo cual después me dijeron, interrumpió la mística del momento, pero tenía que hacerlo. Esta tercera parte de la acción, que llamábamos en la partitura -apareamiento- consistía en hacer una danza ‘reflejo’ en parejas, mientras el volumen de los silbatos se intensificaba hasta el punto que había un pico y el sonido se cortaba al momento en que daba la señal. Entre el público estaban amigues y familiares.
Las semanas anteriores a la presentación tuvimos varios encuentros, en general dedicados al diseño del vestuario y a cocer y hacer la conexión de los LEDS a través de hilos conductores sobre las sudaderas negras. Era un proceso complejo, tuvimos que aprender de positivos y negativos, lilypaths, LEDS, baterías con tiempos de vida y diferentes tipos de potencias. Para mi fue un reto grande pues la tecnología no ha sido mi fuerte. Acercarnos a las nociones fue un útil aprendizaje. Nos vimos en mi casa casi siempre en fines de semana, todes cociendo y charlando inclusive hasta altas horas de la noche.
Vino Todd Lester desde São Paulo, se alojó en casa. Dos días antes estuvimos imprimiendo publicaciones con la información de su fundación Luv ‘Til It Hurts sobre arte y VIH. El entusiasmo y apoyo de Todd ha sido definitivo en todo el desarrollo del proyecto, con la ayuda de Paula Querido Van Erven, brasilera, quien tradujo todas las anteriores relatorías del laboratorio y las publicaron en su plataforma WEB sobre arte y VIH. Todd, por los días del performance organizó un evento en El Parche Artist Residency donde se presentó su proyecto personal como artista, un juego de mesa donde se invita a hablar, discutir y expresarse abiertamente sobre cuestiones relacionadas al VIH/ SIDA.
El elemento sonoro surgió de una manera mágica. Ya habíamos estado hablando mucho sobre cuál podía ser el sonido que acompañara la acción, esto en la sesión dedicada a arte sonora dictado por Mauricio Rivera. Habíamos concluido que lo mejor quizás era encontrar formas de sonidos emitidos desde el cuerpo, naturales, cantos, instrumentos simples, algo así, pero hasta ese momento no habíamos logrado concretar que podría ser. Unas semanas antes de la presentación tuve una tutoría con la artista mexicana Tania Candiani a raíz de mi residencia de diez meses en Flora ARS NATURA. Tania me dijo –pero y ¿has escuchado el canto de las luciérnagas al aparearse? No, le dije. Había consultado literatura sobre luciérnagas, había visto videos y fotografías, ilustraciones, poemas, pero no se nombraba, que yo recuerde, específicamente el sonido de las luciérnagas, quizás porque lo evidente es pensar en las luces que emiten y no en su sonido. Ahora estuve revisando videos de luciérnagas al aparearse y escuché con atención su canto al aparearse. Ese hecho me vino como anillo al dedo, pues el elemento sonoro ahora bajo esta batuta, vendría a ser parte esencial de la acción. Unas días después fui a buscar silbatos artesanales al pasaje Rivas y encontré unos de barro en forma de gallinitas, que sonando al unísono y en la oscuridad, bien podrían ser los chillidos melodiosos que emiten las luciérnagas en su cortejo.
Después de la presentación Mario A Gonzalez, miembro del laboratorio nos invitó a su casa, donde pedimos pizzas y cervezas. Fuimos casi todos los miembros del laboratorio más algunos amigues y familiares. Estuvimos charlando hasta tardísimo, nos preguntamos cómo nos habíamos sentido durante la noche. Algunos miembros del laboratorio se habían ido a hacer videos en un bosque muy oscuro en el Jardín Botánico y trajeron más tarde unes resultados muy interesantes y buenas ideas. Pensamos cómo sería aparecer en grupo con nuestros trajes de LEDS en otros espacio, por ejemplo.
Inmediatamente después de la presentación en mi cabeza rondaba una pregunta sobre la naturaleza de lo estético. Porque el laboratorio, más allá del un éxito o no de la performance, digamos, fue efectivo, funcionó, se dieron las diez sesiones, vinieron les invitades, se crearon lazos de afectividad y trabajo entre les miembres y participantes, surgieron preguntas e ideas importantes sobre la relación de cada uno frente al VIH y este en relación a la actual crisis de migración Venezolana. La pregunta sobre lo estético me seguía rondando de manera acelerada, porque es posible que el performance hubiera sido un poco caótico (es posible que no, pero digamos que se escaparon algunas precisiones sobre las que yo hubiera preferido tener el control) por ejemplo vino mucha más gente de la que esperábamos, los LEDS no se veían tanto como yo hubiera querido pues no había la oscuridad necesaria para que estás surgieran fielmente el efecto imaginado. Pero más allá de eso, la acción funcionó, los cuerpos nos repartimos por la selva y nos encontramos para el momento del cortejo, los LEDS prendieron, emitimos los sonidos que hacían alusión al canto de las luciérnagas al aparearse. He terminado por ir concluyendo que lo importante en cuanto a mi interés como artista frente a lo estético quizás específicamente hablando de este trabajo, es más sobre el contenido. Y la estética que prevalece, por encima más allá de lo bello o no de la performance, es la estética de la colaboración. Es una estética que está más allá de lo visible, que quizás pueda llegar a evidenciarse en relatos, fotos y videos del proceso, pero que solo es posible comprobar al hablar con alguno de los miembros del laboratorio, o y más difícil aún de comprobar, siendo uno de los miembros del laboratorio. Es posible que la estética solo viva en nosotros, porque fue a nosotros a los cuerpos que el laboratorio transformó. Efectivamente hubo cambios de actitud y pensamiento después de este proceso, y ahí esta, según yo, la dimensión estética que importa para apreciar este proyecto como obra o trabajo artístico.
About fifteen years ago, my friend Dani called me to help her with the costume for a short film. She asked me for red clothes and accessories—specifically, an old brooch of fake ruby she knew I had. “Why red?” I asked. “Because this is a story about HIV,” she justified and quickly briefed me about the project, called Certas Coisas (Certain Things). Here is the synopsis: the protagonist, who just found out he was HIV+, dives into a feeling of loneliness and isolation. It was like his individual timeline had been drastically interrupted, and he couldn’t go forward or take the path back. Instead, he would have to forge his own way, apart from the others—or, the ‘other’ was now him. The frustration of the perspective of a solitary life takes him on a daydream in which, through the lens of special glasses, he can identify HIV+ people by a red mark on their faces.
This is my oldest memory of having contact with the subject of HIV and it is precisely the red color that has resonated with both ‘Luv ‘til it hurts’ and ‘Love Positive Women’ projects. Looking at the merged logos of these initiatives (a red heart with the command words ‘love positive women’) made me reassess that past episode and, more importantly, rethink my understanding of it. The cohabitation of stigma and love, two apparently discrete ‘states of mind’, in the same color wasn’t possible to me at that time. Perhaps that is why I didn’t completely understand the fictional plot of that short film or the context in which it was conceived. I could only see the red of stigma. But I have been making an effort to let the love part arise. I am convinced that it happens when the problem is not an individual problem anymore, but a collective one—meaning that lots of allies are required to it.
Certas Coisas was written by the director, and, although it was not officially disclosed, we knew it was his personal story and that another person in the cast was also living with HIV. I remember that this information made me feel slightly alienated from the topic. It was like not having the necessary empirical experience to understand ‘certain things’; or not having the specific knowledge required to sympathize with the character. I have recognized a similar feeling while I was writing this text and even earlier, when I started a conversation with Todd Lester to engage Think Twice with Luv ‘til It Hurts. How can I come on board of a project whose issues I don’t live with? This question not only echoed from myself in the past, but it was also repeated by my colleagues of TT in a different modulation: “we don’t know much about HIV, so wouldn’t it be better to look for someone who researches the topic?” We feel so comfortable with digging into our subjects—onto which we continue to project ourselves and reinforce identities—, that it’s hard to move out from this familiar place. We spent so much time trying to find people to get involved in the project that we forgot to think of the ways we could do this by ourselves. It is not that searching for ‘key figures’ to speak and deepen the discussion is not already a course of action, but what I want to point out here is that collaborative projects are not exclusively about representativeness within it. Allies do not have to represent the cause or the movement, but rather join, in the discussions, fight stigma and commit to going for love.
Working with collaborations or participatory practices is, in a way, also making my problem a problem for the others I’m working with. Luv ‘til It Hurts put me at the point of friction between stigma and love and I asked myself: which ‘red’ do you want to see? It made me remember that behind that short film’s narrative of a solitary HIV+ person, there were about fifteen people involved, all of them working with their own resources and trying to approach HIV in a poetic, comic and unconventional way. It has become symbolic that I kept this memory and that, today, my consciousness focuses not on what is explicit in that synopsis, but what was in the backstage: a collective production with people living with HIV and their allies.
Last week, Irene, who is part of Think Twice, texted me to say that she has started to read about Mexican artists who have or work with HIV themes. Something that is making her rethink a few things from when she lived in Mexico. “It is already ‘working’ in me,” she wrote. It’s almost magic, right? The gesture of bringing HIV to the table and talking about it is enough to spark curiosity and interest on the topic. Allies might not live with HIV, but this is not an excuse to not reflect on it.
I am not a woman living with HIV, but I want to be an ally. I want to commit to loving positive women. I want to see the red of luv.
DSS: Buenas tarde, Jaque, gracias por estar aquí y colaborar con esta entrevista. Te voy a hacer unas preguntas que ya conoces. Si no quieres responder o te sientes incómoda podemos parar y no hay problema.
¿Hace cuánto descubriste que tienes VIH? ¿Cómo ha sido todo desde entonces?
JS: Bueno, yo descubrí que tengo el virus del VIH desde noviembre del 2015. En un centro asistencial de mi barrio estaban en una campaña y me propusieron hacer la prueba, ahí me enteré. Para mi ha sido un poco complicado pero quiero salir adelante, surgir. Esto ha cambiado mi vida notablemente.
DSS: Cuando supiste ¿lo compartiste con tu familia, cómo reaccionaron?
JS: Si, primero lo compartí con mi compañero. Él se impactó mucho con la noticia y se perdió un tiempo. Después, lo compartí con mi madre pero hoy en día me arrepiento. Mi madre me dijo: ‘Defiéndase sola porque usted se buscó su problema’, palabras textuales que me han dolido mucho. Cada vez que tenemos un disgusto me lo saca a la luz.
DSS: ¿Crees que de ser hombre las cosas habrían sido diferentes?
JS: Pues para mí, en mi modo de pensar, los hombres son mas sensibles a la noticia, se impactan y se resienten más. En mi caso, prefiero ser mujer porque yo soy valiente y soy capaz de enfrentar la realidad. Al principio, si me dio miedo por el rechazo de mi familia. Pero ahora lo asumo sin miedo.
DSS: ¿Cómo es tu relación con los medicamentos?
JS: Al principio me daba dolor de cabeza, mareo. Pero ahora son para mi una bendición ¿por qué? Porque me dan mucha energía, fortaleza y me siento bien, no me duele ni una uña. Y me permiten vivir. Mi EPS me los suministra y me los tomo todos los días a las 9 p. m. Son retrovirales. El VIH es un virus que si no tiene tratamiento se va desarrollando y la persona, al principio, no se da cuenta, como fue mi caso. Pero si uno tiene cuidado, va a los controles y se toma los medicamentos y se cuida, va a tener larga vida. Depende sobre todo del cariño que se tenga a uno mismo.
DSS: ¿Crees que tu visión del mundo ha cambiado desde que te enteraste que tenías VIH? ¿por qué?
JS: Sí, porque la mujer que soy ahora no es la de antes. Yo soy una persona albina y de baja visión, las personas de mi entorno me rechazaban pero el rechazo de mi familia me hizo ser más fuerte, me tengo que defender sola y no tengo que depender de nadie. Y eso es lo que estoy haciendo. Estoy contenta porque estoy trabajando en un proyecto que se llama Café a ciegas, donde he conocido a personas invidentes. Dos tenemos la capacidad de ver, pero mi compañera ve un poco más, somos los ojos de grupo. He aprendido que los límites se los pone uno mismo, que si uno quiere surgir los sueños se pueden hacer realidad. Y el VIH es solamente un virus, pero si uno se cuida no pasa nada. Y ya, así de simple.
DSS: ¿Qué les quisieras decir a las mujeres con HIV / Sida?
JS: Les quiero dar un consejo. Que si ven la necesidad de decirle a sus familiares y creen que los van a ayudar que le digan, pero sino mejor que no lo digan. También que uno mismo debe amar su cuerpo, quererse uno mismo, no pueden pensar que por tener VIH no son humanos, tienes valores, hay que seguir adelante, tener cuidado con el tratamiento, que la vida no se ha acabado. Esto es como un volver a nacer, porque uno tiene esperanza, y vive el día a día, no como antes que uno no se preocupaba, hay que fortalecerse, superarse, aprender, mantenerse ocupado, intercambiar ideas, capacitarse.
DSS: ¿ Qué le quisieras decir a los familiares o amigos de personas con el virus?
JS: A los familiares les quisiera decir que sean considerados. Igual uno tiene el virus pero tiene la energía para comprender y hacer todo. Que no los hagan sentir menos y no los discriminen, porque es el peor error de una familia. Mejor que le den la libertad de vivir, porque la libertad es lo más maravilloso que puede haber. Entonces, yo les pediría de corazón que hay que comprenderlos y apoyarlos en lo más que se pueda.
DSS: Gracias Jaque, ¿hay algo más que quieras agregar?
JS: No, gracias, creo que ya lo dije todo.
DSS: Good afternoon, Jaque, thank you for being here and collaborating with this interview. I am going to ask you a few questions that you already know. If you don’t want to respond, or feel uncomfortable, we can stop and there is no problem.
How long have you had HIV? How has everything been since then?
JS: Well, I found out I had the HIV virus on November of 2015. In an assistance center in my neighborhood, they were doing a campaign and proposed to me to do the test, that is where I found out. For me, it’s been a bit complicated but I want to move forward, arise. It has significantly changed my life.
DSS: When you found out, did you share with your family, and how did they react?
JS: Yes, I first shared it with my partner. He was very impacted by the news and was lost for a bit. Afterwards, I shared it with my mother, but today i regret it. My mother told me: ‘Fight it alone, because it was you that brought this problem upon yourself,’ textual words that have hurt me a lot. Every time we have some disagreement, it is brought back to light.
DSS: Do you think that if you had been a man, things would have been different?
JS: Well to me, in my way of thinking, men are more sensitive to the news, they are more impacted by it and resist it more. In my case, I prefer being a woman because I am brave and capable of facing reality. In the beginning, it did scare me, because of my family’s rejection. But now I assume it without fear.
DSS: How is your relationship with the medications?
JS: At first they would give me headaches, nausea. But now they are a blessing to me. Why? Because they give me so much energy, strength, and I feel good, there is not even a fingernail on me that hurts. And they allow me to live. My EPS provides them for me, and I take them everyday at 9 PM. They are retroviral. HIV is a virus that, if left untreated, will continue developing and the person, at first, will not notice it, as was my case. But if one is careful, does checks, takes medicine, and takes care of themselves, he or she will have a long life. It is mostly about the care that one has with him/herself.
DSS: Do you think that your view of the word has changed since you found out you had HIV? Why?
JS: Yes, because the woman that I am today is not the same that I was before. I am an albino person and with low vision, people around me rejected me, but my family’s rejection made me stronger. I have to defend myself alone, and I do not have to depend on anyone. And that is what I am doing. I am happy because I am working on a project called Café a Ciegas, in which I have met people who are blind. Two of us have the capacity to see, but my partner sees a little bit more than me. We are the eyes of the group. I have learned that limits are imposed by ourselves, and if we want our dreams to emerge, they can be made real. HIV is just a virus, and if one takes care of him/herself, everything is okay. And that’s it, that simple.
DSS: What would you like to say to women with HIV / Aids?
JS: I want to give them an advice. That if they have the necessity of telling their family members, and believe that they will help them, that they do so. But otherwise, it is best that you don’t tell them. Also, that you have to love your own body, love yourself, you cannot think that because you have HIV that you are not human and have values. You have to keep moving forward, take care with treatment, as life is not over. It is like going back to being born again, because you have hope, and live life day by day, not like before when you did not care. You have to strengthen yourself, better yourself, learn, keep yourself busy, exchange ideas, get trained.
DSS: What do you want to say to family members or friends of people with the virus?
JS: To family members I want to ask them to be considering. A person may have the virus, but still has the energy to understand and do everything. That they do not make them feel lesser, and discriminate against them, because it is the worst error a family can commit. It is better that they give them the liberty to live, because liberty is the most wonderful thing there is. So I would ask the family members, with all my heart, to understand them and support them the most possible.
DSS: Thank you Jaque, is there anything else you would like to add?
JS: No, Thank you, I think I have already said it all.