what’s the connection between Luv & CHAOS?

Hi Deza,


Luv ’til it Hurts is a two-year project focused on HIV and Stigma. CHAOS is a campaign about mental health. As a person who has a chronic mental health condition as well as HIV, it is easy for me to consider and ‘internalize’ how my mental state and HIV ‘get along’ within me. As an artist who makes public, multi-stakeholder projects, I would like to ‘externalize’ a range of topics that pertain to HIV and stigma. I am using my own experience to ask how others contend with the two ‘co-morbidities’ (as the doctors call them) of HIV and depression. 


I use the metaphor ‘get along’ as if HIV and depression are kids that need to behave together on the playground. I have other metaphors that come to mind, but prefer this one. On a good day, they do get a long ok. I pop three pills (2 for HIV, 1 for depression) around lunchtime each day. I had already dealt with depression before contracting HIV, so I wasn’t surprised when I needed to take a higher dosage to contend with the stress of learning my HIV status. This dosage has gone down (and back up and down a few times) over the five year period of being HIV+. 


There are other times when I start to worry about the different medications interacting, even if prescribed by the same doctor. There are times when I’ve felt my dream life become more active, and wondered if it was the change from an older HIV med to a newer one, or the sometimes shifting dosage of the depression med. I have HIV+ friends who have also expressed their confusion (and sometimes denial) of side effects, but I admit that these conversations are not as common as the ones in which we compare HIV meds (like, what does your doctor have you on now?), and at the same time make mention of our ‘co-morbidities’ and the other drugs we take, entre nous. 


There is no question that talking with other poz folks offers a form of solidarity. However I don’t remember talking so much to other depressed folks before I contracted HIV. From a personal standpoint, I’m quite certain that open conversation and solidarity are important to quality of life and happiness. I think this is the connection for our projects.


I vividly remember an awareness campaign over a decade ago for which you worked with the City of Paris, and beautiful black and white images representing able bodies in a way that moved my understanding on ‘ableism’ were on the sides of city buses. Deza, I think you are a brilliant campaigner, and in Cameroonian terms, you are my big sister. Given that CHAOS and Luv ’til it Hurts are happening concurrently, I would simply like for our campaigns to ‘bang up against each other’, one learning from the other. If that’s ok?


Thank you to Lois Weaver (ample version)

Conceived by Luv ’til it Hurts participants during a design workshop in Port Said, Egypt, the LUV_GAME is inspired by The Long Table, a performance process by Lois Weaver. The game is designed for art world and non-art world venues … public, private and super private spaces. At the same time it may be available online one day. The game pieces will be downloadable from the LUV site by World AIDS Day, December 1, 2019. Each time the game is presented in a new language, the translated ‘instructions’ will be made available from the site. The game can be played in black and white or in color. 

The game is modeled after Exquisite Corpse. There are five shapes, including a signature heart. Four of the shapes are varied in size (large and small), design and color when feasible. The black-and-white game is meant to be played with very little overhead. The geometric shapes of the tiles as well as the graphic designs of the tiles allow for almost infinite configurations.


The ‘heart’ tile carries the LUV logo and a description of the project. A second version of the heart tile is available for partner events. The partner’s logo is on one side. On the back of the four variated shape tiles, there is room for a LUV_NOTE. The public or audience is encouraged to take a tile and write something on the back. Ask a question or share a thought on HIV. If it’s in an art or community context (whatever the grounds for playing the game), the public is encouraged to respond to their surroundings, in as general or as personal terms as the like. 


The LUV_GAME requires a wall or floor.

The first tile is placed, and tile holders are invited to place theirs around it–or shooting off from it. The tile holder decides if the design faces out or if their LUV_NOTE faces out. This can happen in passive or active settings. For example, in a museum or gallery context, there are a set of five or six large tiles on the exhibition wall. Succinct instructions for the game are printed on the nameplate for the piece. The variated tiles are stacked beside the piece as broadsheets sometimes are. A space is made available on the wall for the initial set of 5/6 tiles to expand and extend (perhaps being refreshed at the beginning of each day). 


A scheduled viewing of the same group show, similar to other public settings offers an active context in which to play the game. The process is led with the instructions announced. Tiles are distributed. Markers and sticky tape for writing and pinning the LUV_NOTES. 


Having a discussion after the allotted time period for reflection/writing/pinning-up the tiles is suggested, and is meant to be an extension of the process. The game does not need to be discussed per se, but perhaps the broader context–art show or community center–does. 


The game should help discussions along. 


Thank you Lois Weaver. 

Fault Lines

Luv ’til it Hurts is the third in a series of durational, multi-stakeholder, rights-focused art works: freeDimensional (2003-12), Lanchonete.org (2013-17), and LUV (2018-20). In Why Make an ‘Open Work’? I discuss some of the logic around stakeholder recruitment. Between the first and second, the first and third, and the second and third projects, I have invited cross-over stakeholders. For example, Adham Bakry who is working on ACT I has worked on design outputs for all three projects. There is a practicality in doing so: to learn to work with another artist or designer ‘practices a muscle’ that gets stronger through repetition. If it works, it really works, and can reduce some of the time needed to train production staff on a project that includes a ‘cross-over stakeholder’ and for which they are contributing a similar skillset offered for a past project. Design is an easy example to use here.


With multiple stakeholders joining a process and taking different levels of ownership and leadership, the topic of authorship invariably comes up. I became fascinated by questions of authorship and ownership when making the first project, freeDimensional. fD created a bridge between the human rights and art worlds for the express purpose of using artist residency ‘bedrooms’ for artist and activist safe haven. We humbly aspired to create a ‘sea change’ on the issue of artist safety hosting.  A dialogue happened along the way (10 years) with this goal. At the time I understood intuitively that in order for an idea to spread effectively it would need the largesse of an ‘organization’ and that typical considerations of authorship, ownership and artist credit would be muted by this strategy of imitation. Around this time I started using the term ‘organizational form’ to describe my work. Working in organizational form is synonymous for me to institutional critique. My projects ask institutions to change the way they act, and propose an example, solution or prototype on which to test a new idea for or functional form of ‘organization’. Therefore, and from a very early moment in its lifespan, LUV is explicitly offering a critique on authorship and ownership. I think this will become clear in ACT II when the project proposes a business plan for fighting HIV-related stigma.


Admittedly there have been frustrations around crediting within all three projects. They do seem unavoidable. And, yet I would argue that the cumulative output of the overall multi-stakeholder project justifies these, at times, tedious discussions. While I enjoy exhibiting and curating when I get the chance, there have been points in both freeDimensional and Lanchonete.org when I did not want them understood in these terms. Stepping outside some of the art world systems is therefore a conscious decision, for these are but some of the institutions that LUV hopes to move to action. Over the course of the 1st and 2nd projects, I began to understand the relationship between art world power and access, patronage and funding, and ultimately have to rethink how to finance the multi-stakeholder, durational art works (or projects) I fancy making at each turn. For LUV, the process of raising art world money and seeking art world access will be included in the ‘story’ or archive of the project. 


The idea for LUV started forming shortly after I contracted HIV while living in São Paulo. At the time I was co-making Lanchonete.org, a project on the right to the city focused on São Paulo’s center. With many other partners, Lanchonete.org developed (curated and produced) a year-long program called Cidade Queer or Queer City. Several initiatives and ideas came up during this period, such as the EXPLODE! Residency, ATAQUE Ball, Queer Graphics LaboratoryJanta: Queer Food / Queer Politics, the first episode of TravaLíngua and the Textão exhibit at São Paulo’s Museum of Sexual Diversity as well as an eponymous book and film. We were looking for relations between the themes of queerness and the right to the city; and at the same time, I was already experimenting deeply creating spaces in which discussions about HIV could flourish. Because Queer City–like Lanchonete.org–was owned by a lot of people, I must credit some for helping me to experiment with the emerging ideas I was having on HIV-related programming. 


Making three projects back-to-back and with the same tenets may get wrapped up in a nice package after the fact. I am presently writing a text on methodology for example. In a methodological sense, I see how learning from the first project allowed me to shorten the timespan for the second, and again for the third. And, in this sense, I think it is feasible to make a game plan from an idea and implement it over a two-year period. Full stop. But the two-year timespan is also for me. You see, I knew before I started that this would be the most personal of the three works, and that focusing on the theme of HIV would unleash an emotional ‘heat’ in me and other stakeholders, and indeed by our interactions. The first year of LUV has taught me a lot. I invited some cross-over stakeholders into the project, and some of those interactions resulted in tension, which I attribute to this emotional heat. I experienced tensions with new stakeholders as well, but single out crossover stakeholders for another observation, which is: each project assumes a different organizational form–freeDimensional (network/sea change), Lanchonete.org (collective/platform), and LUV (business plan/philanthropic device)–and for crossover stakeholders there is a necessary shift of pace directly related to the hierarchical proposition of the next conjured form. And, compounded by the speed (duration) of the project created/used to test it out.


While there is not a coded answer in these fault lines, I think it is important to bring up authorship, credit, fundraising and hiring practices between artists in order that LUV’s work can be considered alongside its political economy. 


To date, Luv ’til it Hurts has received a $50,000 from the Ford Foundation, which was spent in the first year of R&D on administration, participant travel, honorariums, graphic and web design, printing, web hosting costs and commissioning content. The second year will require additional fundraising. 


Why Make an ‘Open Work’?

I launched Luv ’til it Hurts, a long-considered project on HIV and stigma in July 2018. The project goes through the middle of 2020 officially, and yet I’m also quite interested in the afterlife of projects. DURATION is important to me for reasons I’ll explain later, and based on specific methods drawn from the community organizing field. Luv ’til it Hurts follows a five-year project on the right to the city, site-specific to the center of São Paulo called Lanchonete.org and a ten-year project, freeDimensional on free expression and artist safety (and shelter) in pre-existing artist residencies around the world. Given that an afterlife is expected and having experimented with different forms of archiving (or the project reporting on itself) with both freeDimensional and Lanchonete.org, Luv ’til it Hurts attempts to externalize a ‘record’ of the two-year process in various ways, such as the project’s website as ‘scrapbook’… and even an annual report

From ‘Gamestorming: A Playbook for Innovators, Rulebreakers, and Changemakers’ (2010)

In my work, there are often elements of institutional critique woven into the project design. I don’t care to always point to them, but too this series of three multi-stakeholder, durational, rights-focused projects are intended as a form of action research and therefore patently ‘open’ to independent investigation and interrogation. I myself ‘ask’ the projects as questions. They now span almost 20 years, a period in which I’ve also been in dialogue with other artists and observed various forms of practice in both the art and human rights ‘worlds’. At this point I find that I am considering methodology. As a method, I ‘network’ my projects in particular ways, through personal artist connections and through thematic or ‘field’ institutional approaches. It comes as second nature to me and perhaps is therefore easier to do than it is to explain. I decided to wait until after the 3rd and final project (in the series), Luv ’til it Hurts is finished before doing a ‘deep dive’ on methodological issues in this same twenty year period. That work (or book) already has a name, which is Variations on Worldmaking.

At the same time, the 3rd project (for which this site is eponymous) is the most personal of the three. I am HIV+. So while freeDimensional and Lanchonete.org may give me an edge on framing such durational, multi-stakeholder, rights-focused projects as Luv ’til it Hurts, the subject matter of HIV and stigma affects (infects) me wholly. 

Each process has had a phase of inviting stakeholders. Given that this is typically the most intense period within the overall ‘durational’ process, I can now say that a longer break between the second and third project was deserved. Lanchonete.org did not ‘stop on a dime’ and so the beginning of Luv ’til it Hurts overlaps the second project, just as it has overlapped the first project, freeDimensional.  While a project can gain stakeholders throughout (and I might argue even after the end of its designated timeframe), the first participants to join are needed for contiguous growth and the most time is spent with these stakeholders (and usually in discussion over project design). They then repeat this process with new stakeholders if they so choose. I typically open and ‘hold’ the process. It can sometimes feel like the role of artistic director and is quite lonely at first. But, after a few more principal stakeholders are on board it is possible to co-lead while also doing other individual and group ‘actions’.

From ‘Gamestorming: A Playbook for Innovators, Rulebreakers, and Changemakers’ (2010)

Regarding Luv ’til it Hurts—and en brev—I will hold the process (ultimately an open design method that includes finding money to make the project); write for the website in a couple of ‘threads’—about the process of making the project and some creative texts; co-curate public programs (conferences, exhibitions, residencies, etc); introduce an independent work (or action) within the ‘container’ as would be the prerogative of any serious stakeholder; and ultimately archive the project through its end-date and a short period thereafter. One needs to want to ‘use’ the device to participate … it is not a theoretical project in that ‘sideline’ sense, even if I may consider it a form of research (something I’ll explain later). I am told that I can be a toughie during the recruitment phase, encouraging people off the sideline in smooth and not-so-smooth ways. It is critical no matter how you ‘crack it’ this particularly tedious and essential part of the process. 

Once the container is secure (and explainable) in act two, a larger range of actions are possible. Luv ’til it Hurts is completing its first act I do believe. I will say so here when the process is clear of each of its milestones. 

Such a project can be tiring at times for sure. I make open works because they excite me. And, nourish me at times as well. 

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[*The phrase ‘open work’ is a reference to Umberto Eco’s criticism on such works throughout history, The Open Work, Harvard University Press (April 1989), shared nicely online by Monoskop.]


Embroidery and curating non-artists

photo: Cadu Oliveira

My upstairs neighbor, Carué is a medical doctor and AIDS activist. While he doesn’t front as artist, he has a cool project (that occurs to me as artistic) by which he asks for a piece of clothing. He takes it to a local shopping mall, Galeria do Rock where a lot of young people hang out in the center of São Paulo and a specific embroidery shop in the busy arcade. He pays for ‘HIV+’ to be embroidered somewhere prominently on the piece. He then tells you where to pick it up. One need not be HIV+ to receive this gift. Recently I asked him if I could include a photograph of his embroidered work in a museum show that I’m co-curating. For a range of reasons, the curatorial group first used a cropped image of his suit coat without his face, and agreed that I would ask him if he preferred a different image. Carué insisted that we show his face, and so we replaced the ‘suit coat’ with a new image he provided. It was an easy decision to come to, perhaps because we have already acknowledged both the need to personalize (or put a face to HIV) against the subtext of using the face of a white man for this particular theme (and in the Museum of Sexual Diversity’s location in a busy metro station). Since these topics were already ‘on the table’, the curatorial group was able to easily balance the topic of HIV/AIDS with other themes; reconsider the prominence and placement of non-white faces and voices in the small space; and adjust the ratio of women, men, trans (men and women), and non-binary folks participating in the show. As a curator, artist and HIV+ downstairs neighbor, I found it a unique learning experience. And, I also understood why Carué required me to pick up my gift, when the lady at the embroidery shop asked me to repeat more loudly what was embroidered on the piece as she shuffled through past orders in the back of the shop. ‘HIV+’ I said, and tipped my head to the guy behind me in line who was waiting on us to finish the transaction. She found it, holding up a green linen button-up with fluorescent orange embroidery.

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