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?


Venezuela, Bogotá

Luciérnagas Laboratorio: Arte | fronteras | VIH  proyecto de arte por Daniel Santiago Salguero

Querido Todd. Respondiendo a tus preguntas del último correo te cuento: Efectivamente la crisis Venezolana ha traído una cantidad inmensa de personas de Venezuela a Colombia. Es la migración interna más grande en la historia reciente de Sur América. Se habla de hasta cuatro millones de venezolanos que están ahora en Colombia. Esto ha transformando el territorio cultural. Han llegado a asentarse en todas las ciudades de Colombia, inclusive en las islas del Caribe o en territorios rurales distantes de las ciudades. Muchos vinieron en una primera ola, quizás donde hubo más oportunidades o eran personas con preparación profesional. Ahora no es así, vienen las personas más pobres y en las situaciones más difíciles. Vienen inclusive hasta Bogotá caminando desde Venezuela. Atraviesan páramos y se enfrentan con la actitud xenófoba de muchos colombianos que no toleran su situación. No recuerdan por ejemplo que fueron los colombianos lo que emigraron a Venezuela en nuestra crisis económica y de violencia en los años noventas. Se dice que han regresado más de 300.000 colombianos que vivían en Venezuela. También se dice que la situación acá para los Venezolanos está tan difícil que muchos se están regresando a su país, se dice que se ven personas caminando por las carreteras hacia Colombia y otras ya regresandose a Venezuela. La relación específica y que interesa con respecto al VIH es que en Venezuela ya no hay medicinas para atender el virus. Así que quienes tienen VIH en Venezuela deben salir del país en una situación aún más vulnerable que las de los otros migrantes. Deben además de buscar techo, trabajo, arraigo, buscar su medicina, que es muy costosa y que el gobierno colombiano solo suministra a personas nacidas en el país a través del sistema de salud público. La situación está desbordada por muchos lados. Por ejemplo hasta la semana pasada se dio nacionalidad colombiana a más de 24.000 niños que habían nacido de padres venezolanos en territorio colombiano y que hasta ahora no tenían nacionalidad, ya que los consulados venezolanos están cerrados o no existen mas. Cómo vez, son muchas las aristas y hechos por analizar en medio de la debacle. Se dice que esto traerá muchos cambios sociales, y culturales, como se ha visto que ha sucedido en las grandes migraciones a nivel mundial y local. Ayer oí en la radio, están entrando alrededor de cincuenta mil venezolanos diariamente por la frontera a Colombia. A través del laboratorio estamos desentrañado estas historias, informaciones, estadísticas, subjetividades. Entender y encontrar información nos ayuda a situarnos en el territorio que habitamos. Desde el laboratorio intentaremos dar voz y espacio para reflexionar sobre estas urgentes temáticas.


El laboratorio está siendo tomado por personas en su mayoría colombianos. Casi todos tienen VIH y llegaron al laboratorio a través de la Liga Colombiana de lucha contra el sida, un aliado definitivo para el laboratorio.


El laboratorio consta de 10 sesiones temáticas, de las que ya llevamos cinco: El cuerpo en las artes, Memoria Léxica, Arte y fronteras, Arte y VIH, Grupo de estudio y redes de afecto. Estas sesiones han traído charlas y colaboraciones muy esclarecedoras de la situación. Cómo ya sabes la idea es hacer un performance final en espacio público, al parecer sucederá durante la noche del 25 de octubre en el Jardín Botánico de Bogotá. Las sesiones son abiertas y gratuitas para la comunidad. Por lo general nos encontramos en grupos de 8 a 15 personas. La idea es que haya un grupo constante, creo que serán unas diez personas posiblemente las que lleguen hasta el final del laboratorio para la presentación. La metodología de trabajo para este performance viene de herramientas que adquirí en la Maestría de Teatro y Artes Vivas que hice en la Universidad Nacional de Bogotá hace unos años. Esta maestría es dirigida en gran parte por los directores de la compañía de teatro Mapateatro, que tiene un interés especial en poéticas relacionadas a la memoria, lo político y social.

____________________________________________

Luciérnagas Laboratory: Art | borders | HIV  art project by Daniel Santiago Salguero

Dear Todd. In response to your questions from your last e-mail, let me tell you: Indeed, the crisis in Venezuela has brought a huge amount of people from Venezuela to Colombia. It is the biggest internal migration in recent South American history. It is said that there are almost four million Venezuelans in Colombia now. This has transformed the cultural terrain. They have settled in all towns across Colombia, including in the Caribbean islands and in rural locations, far away from the big cities. Many have come over in a single first wave, perhaps to where there were more opportunities, or they were people who came with a specific professional training. Now it is no longer like that, the people who are coming are poorer and in more difficult situations. They even walk from Venezuela all the way to Bogotá. They cross moors and confront the xenophobic attitudes of many Colombians who do not tolerate the situation. These Colombians do not remember, for example, that it was them who emigrated to Venezuela in the nineties during the crisis afflicted by economics and violence. It is said that more than 300,000 Colombians who lived in Venezuela have returned. It is also said that the situation here for Venezuelans is so difficult that many are returning to their country, and that people are seen walking on the highways to Colombia while others are returning to Venezuela. The specific relationship to HIV is that Venezuela no longer has the medicine for the virus. So those who have HIV in Venezuela must leave the country in an even more vulnerable position than the that of the other migrants’. Asides from looking for a roof, work, and some rooting, they must also look for their medicine, which is very expensive and the Colombian government only supplies through the public health system to people who were born in the country. The situation is overstressed in many ways. For example, up until last week, the Colombian nationality was given to more than 23,000 children who were born from Venezuelan parents on Colombian territory, and who up until now did not have a nationality, since the Venezuelan consulates have been closed down, or no longer exist. As you can see, there are many sides and facts to analyze within the debate. People say that this will bring about many social and cultural changes, as we have seen has happened in large migrations on both global and local scales. Yesterday I heard on the radio that there are over fifty thousand Venezuelans entering, daily, through the Colombian border. In the labs, we have been unraveling these stories, informations, statistics, and subjectivities. Understanding and finding information helps us situate ourselves in the territory in which we inhabit. In the lab, we try to give voice and space to reflect on these urgent themes.

The lab is being used by Colombians in majority. Almost all of them have HIV and arrived at the lab through the Liga Colombiana de lucha Contra el Sida, a definite ally to the lab.


The lab features 10 thematic sessions, five of which we have already done: The body in the arts, Lexical Memory, Art and borders, Art and HIV, Study group and networks of affect. These sessions have brought talks and collaborations that have been very clarifying about the situation. As you already know, the idea is for there to be a constant group, and I believe there will likely be around ten people who will arrive before the end of the lab for the presentation. The work methodology for this performance comes from tools that I have acquired during my Master’s in Theater and the Living Arts, which I completed at the National University of Bogotá some years ago. This Master’s is managed in large part by the directors of the Mapateatro theater company, which has a special interest in poetics that are related to memory and to that which is political, as well as social.

Sesión #1 – Contexto del cuerpo en las Artes

Sesión #2 – Memoria Léxica

Sesión #3 – Arte / VIH

Sesión #4 – Arte / Fronteras

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. 

A Conversation with Artist Eric Rhein

New York based artist Eric Rhein speaks about his two exhibits, Lifelines, which
have been on view in his home state of Kentucky.
Lifelines is an exhibition at two locations in Lexington: at Institute 193 through
July 27 th , and the Lexington’s 21c Museum Hotel, through the end of August.
Todd Lanier Lester, of the Luv ‘til it Hurts campaign, asked Eric about the
shows—and his current and ongoing concerns.


TL:
What is the significance of your showing your work in Kentucky?


ER:
First, I want to thank you for having this conversation with me. As it happens,
today is the last day of the part of the show that’s at Institute 193. While the
companion show at the 21c Museum Hotel runs through August, exhibitions are
fleeting and only those who are geographically near have the opportunity to see
them. So, via this conversation, it’s rewarding when my artwork and the history
embodied in it can contribute to the conversation around HIV and AIDS, beyond
the walls of those exhibitions.


TL:
But tell us: How is Kentucky a special place for you?


ER:
Presenting Lifelines in Kentucky has a particular resonance. My family roots are
in Kentucky, and a sense of heritage and lineage are important to me. My Uncle
Lige Clarke was a formative pioneer in the Gay Rights movement of the 1960’s
and 70’s. He and my mother grew up in Hindman: a tiny, rural town in
Kentucky’s Appalachian Mountains—yet he had the fortitude to help lead the
way to an expansion in gay identity through his activism, like helping to
organize the first picket for Gay Rights at the White House in 1965, and also
founding and editing the first national gay newspaper, Gay, with his partner Jack
Nichols, in 1969. I see my drive to include my HIV status in the context of my
artwork as being linked to my uncle’s activism.

TL:
How does your memory of your uncle tie in with your own growth?


ER:
My uncle had a spiritual core, cultivated through his studies of Yoga and eastern
philosophies, and his appreciation of the great American poet Walt
Whitman—in fact, he always traveled with a copy of Whitman’s book-length
poem, Leaves of Grass. My uncle’s legacy—a liberated vision of life as a gay
man—was passed to me through my encountering autobiographical books
which he wrote with his partner Jack Nichols. That was just when I was entering
puberty and finding myself. Their book about their relationship and activism, I
Have More Fun With You Than Anybody, continues to inspire me. Further, AIDS
activism—which has a spiritual aspect—has contributed to the evolution and
visibility of LGBTQ identity.


TL:
I’m quite taken with the title of the two shows: Lifelines. Where does this title
come from?


ER:
In the Institute 193 show is a series of three photos that I call Me with Ken. A
photo, from that series, is titled Lifeline. So the name of the overall exhibit
comes from that—yet reaches beyond to encompass themes running
throughout my work and my purpose for showing it. In that Me with Ken series
(which is from 1996) I’m pictured with my then boyfriend Ken, and it was
during the summer that protease inhibitors were initially released. Due to my
having been on those new medications, as part of a study, I was rapidly gaining
a renewed vitality. Ken hadn’t yet accessed the protease inhibitors, and was on
daily IV drips for declining health. Hence “lifelines” refers to this, and to a larger
interconnectedness as well. The intimacy and tenderness, heightened within
that period of shared vulnerability and mutual-caring, is shown in that series of
photos—and is something that I hope runs through my body of work, from my
photographs –to my AIDS Memorial Leaves.


TL:
I know that your project, Leaves, is an important part of your body of work. Can
you tell us about it?


ER:
Leaves is an ongoing project which is a growing memorial to those I personally
knew who died of complications from AIDS. For each individual (and sometimes
for couples), I express my sense of them through a wire outline of a leaf.
Lifelines also points to an intergenerational exchange that is important to me.
When Paul Brown, the director of Institute 193 first came to my studio, two
years ago, it came out that he was about to turn 27, the same age I was when I

tested HIV positive in 1987. He had gravitated to my portfolio of photographs
depicted me and my companions in the 1990’s, sighting that they affirmed an
intimacy during the height of the AIDS epidemic, which contradicted the
narrative he’d been given when he first came out. Paul shared that his coming
out, like many men of his generation, was colored by associating being gay with
HIV—and, consequently, fear of sexual expression. Shifting the narrative he’d
inherited to a more expanded one, was primary to our working together.

TL:
Can you say a bit more about the relation of HIV to your artwork and life?


ER:
Having lived with HIV for just over three decades, I’ve found that there’s a real
potential for transcendence—yes, even within this complex history of
vulnerability, loss, and survival (and, maybe, sometimes, because of it.) Sharing
my artwork, which came through my experience of HIV and AIDS—and sharing
it with younger generations—brings a sense of purpose and healing.


TL:
I hear that you have written a piece that corresponds with many of the themes
you’ve explored in your artwork (and which we just talked about). Can you tell
me more? Will we have access to it soon?


ER:
Yes, “The Gathering” is a piece that I’m happy to share with the Luv ‘til it Hurts
community—and I’m glad to send it along soon, to be available on the website.


TL:
One more thing: is it true that there’s a book coming out on your work?


ER:
Yes. It too will be titled Lifelines—and will come out early next year.

  • Rain (self-portrait), 1994 Silver gelatin print, 20x16 inches


= = = = = = =
Lifelines, an exhibit of Eric Rhein’s work, continues at the 2c Museum Hotel
through the end of August, 2019.
21c Museum Hotel
127 West Main Street
Lexington, Kentucky 40507
https://www.21cmuseumhotels.com/museum/exhibit/eric-rhein-lifelines/
Eric’s website is: http://www.ericrhein.com

= = = = = = = =

A Discussion between CHAOS + LUV


TL: Hi Deza .. we’ve known each other for over a decade now and met through my beloved Cameroonian network and when I was making freeDimensional. You are based in Paris and FULL STOP, I admire your work. When I met you, you had just placed beautiful portraits on Paris city buses of people that challenge our notions of what it means to be ‘able’…that opened a discussion on ‘ableism’ in Paris and far beyond. Do you have a link to that previous work you can share here?


DN: Hi Todd, thanks for kindly introducing my work. Aesthetics and Disability was indeed my first big concept that started in 2008/2009 in South Africa with the sponsorship of the city of Cape Town. The exhibition was displayed afterwards in many other places and cities, and among them, Paris. My goal with this exhibition was to challenge the notions of “ableism” and “beauty”. By inviting people to look far beyond what their eye can see, I wanted to celebrate diversity and particularly in this project people with disability.

You can read more about this project here: https://www.carnetsdesante.fr/Esthetique-et-handicap

TL: And, what is CHAOS? Can you tell us a little about the recent poster campaign in Paris? And also about the upcoming.

DN: CHAOS is an awareness campaign on mental health. According to the World Health Organization, 1 out of 4 people worldwide suffers from mental health issues. It’s the first cause of disabilities worldwide and the second cause of sick leave. Thus, it’s a major societal problem that needs to be cleverly addressed in a crosswise manner (in institutions, in corporations as well as in society in general). Besides, psychological disorder goes with various stigmas and taboos. And the people hit by this issue also suffer from isolation. As a communication agency specialized in social corporation responsibility, we decide to launch this awareness campaign to stop the taboos and to open up a space for dialog that will lead in the building of a more inclusive society.   

CHAOS uses technological tools to propose an immersive experience in the “brain” of someone living with a mental health issue. The experience is divided into 2 parts, the first is just like a very poetic and epic trip in the “brain” and the second is 4 movies in VR talking about the personal experience of 4 people living with psychological disorders. It’s an outdoor campaign that will be showcased in different cities in France and hopefully the campaign will be international if we succeed in making important collaborations and raising enough funds for that purpose.   

TL: Deza, when we got together in Paris a year ago, we discussed the overlaps between mental health and stigma (and in my case) HIV.

DN: Stigma is an obstacle to fulfillment as it prevents people from opening up and blossoming. And unfortunately, all those who are “different” from the standards (mental health, HIV…) face it somehow. We need to stand up in order to stop the stigma.  

TL: What we know is that HIV can exacerbate mental health issues and much of this is in the ‘invisible’ space that also conjures various stigmas. There are also cases in which a person has a mental health condition before contracting HIV. And, there are plenty of ways to understand how stigma affects people with either chronic illness, a mental health condition, and HIV. Yet these discussions tend to be sotto voce and only get attention when they become extreme or so explicit that families and communities must address them. I am making LUV in order to open up a discussion on HIV related stigmas, and it seems we have a pretty big overlap with those also associated with mental health. What might our projects do to help broaden understanding in this ‘overlap’ space?


DN: Our projects need to be very popular and accessible to billions of people. That’s why I chose to do an outdoor campaign. It has to go to the people and not wait for people to come to it. It has to be funky and speak a language that anyone can understand. Last but not least, it has to give space for discussions and create links between people from different backgrounds and cultures.  

TL: And, since I happen to live with both HIV and manic depressiveness, one of my biggest concerns is how the two medications interact, and the implications of changing HIV meds as there are advancements in care against the dosage of Bupropion I usually take for leveling out my moods. But too in relation to stigma, I imagine that the relabeling of the same Bupropion drug for those who are ‘quitting smoking’ has something to do with perception and, yes, stigma. Is there anything you’d like to ask me for your CHAOS campaign? Let’s talk about it … I would LUV to help out. 


DN: Thanks for openly sharing your personal experience on mental health issue as well as on HIV. I’d love to record a few minutes of interview with you for the CHAOS podcasts as the idea is also of empowering others with inspiring people just like you.


TL: What is happening from 3-6 October in Paris … it’s something BIG, right?


DN: Can’t wait to get there… Y.E.S., it’s the next big thing from E&H LAB and I’d be glad if you could come to Paris for this opening. More to be expressed soon.

For more information on CHAOS, see: https://e-hlab.com/portfolio/xperiencechaos/

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. 


Pour La Libération Immédiate de Malak El-Kashif!

Lundi 1er juillet, à l’initiative de l’ Egyptian Commission for Rights and Freedoms (ECRF), ANKH (Arab Network for Knowledge about Human rights), Cairo Institute for Human Rights Studies (CIHRS) et avec le soutien d’EuroMed Rights, la Fédération Internationale des ligues des Droits de L’Homme, et la Ligue des Droits de l’Homme, s’est tenue une conférence de presse au siège de la LDH pour réclamer la libération immédiate de l’activiste transsexuelle égyptienne Malak El-Kashif.

La conférence s’est tenue en présence de Chloé Rassemont Villain, militante trans-idenditaire et ancienne détenue, Dalia Alfaghal, militante LGBT égyptienne, Leslie Piquemal, responsable du plaidoyer du Cairo Institute for Human Rights Studies à Bruxelles et sous la modération de Michel Lubiana, Président d’honneur de la LDH.

Les différents intervenants sont revenus sur la situation de Malak Al-Kashif, activiste égyptienne transsexuelle de 19 ans arrêtée pour avoir critiqué le régime sur Facebook. Depuis le 6 mars, elle a été emprisonnée, torturée et discriminée à la fois pour son identité de genre et ses opinions politiques. 

Chloé Rassemont Villain est revenue sur son parcours en tant que première personne à se déclarer trans-identitaire en prison et à demander l’opération, à obtenir derrière les murs un traitement hormonal, à changer de prénom, à obtenir d’entrer dans le protocole pluridisciplinaire, et à être unie devant le maire a un garçon. Elle a détaillé les différents abus et vexations qu’elle a subis pendant ses 16 ans de détention de la part de l’administration pénitentiaire, en arrivant notamment à devoir s’opérer elle-même. Suite à ces expériences traumatiques, sa situation a entraîné la mobilisation du Procureur Général des Lieux de Privation de Liberté et du Comité contre la torture des Nations-Unies. Ce dernier a d’ailleurs adressé un message à la France indiquant que le traitement subi par Cholé Rassemont Villain en détention s’apparente à de la torture. Depuis sa sortie en 2014 et malgré plusieurs interventions auprès de différents parlementaires, la France ne s’est jamais excusé pour la manière dont Chloé Rassemont Villain a été traitée.

Après ce témoignage, Dalia Elgarghal a apporté des précisions sur le cas de Malak El-Kashif. Cette militante transexuelle et défenseure des droits humains est détenue en cellule d’isolement dans une prison pour hommes depuis plus de 120 jours. Elle est accusée de « soutenir une organisation terroriste » et « mauvais usage des réseaux sociaux afin de commettre un crime », pour avoir créé un événement sur Facebook réclamant que le gouvernement égyptien soit tenu responsable du mauvais état des infrastructures et de la mauvaise gestion d’un accident de train ayant entraîné la mort de 25 personnes. Dalia Elfarghal est revenue sur les conditions de détention de Malak El-Kashif, qui a subi des examens anaux forcés, est privée d’accès à ses traitements médicaux dans le cadre de sa transition et même pour son diabète. Elle a commis une tentative de suicide en raison de ses conditions de détention. Dalia Elfarghal a insisté sur le fait que Malak El-Kashif subit une double peine, l’une pour avoir exprimé pacifiquement son opinion, l’autre pour être ouvertement une femme transsexuelle.

Leslie Piquemal, quant à elle, a replacé le cas de Malak El-Kashif dans une perspective plus globale de répression généralisée du régime égyptien contre les défenseurs des droits humains. Elle a relaté que les violations contre les défenseurs des droits humains – ainsi que les journalistes et dissidents politiques pacifiques – se sont fortement aggravées ces 3 dernières années, et ciblent particulièrement les défenseurs et organisant travaillant sur les cas de torture et de disparitions forcées. Dans ce type de cas, les personnes sont fréquemment d’abord victimes de disparition forcée avant de réapparaitre plus tard en détention préventive, accusées de crimes graves. La disparition forcée dans ces cas, est presque toujours associée à l’usage de la torture ou au minimum de la violence physique et psychologique.

Selon Leslie Piquemal, le cas de Malak El-Kashif est révélateur de l’usage systématique de la torture par le régime égyptien tel que dénoncé par le rapport annuel 2017 du Comité contre la Torture de l’ONU. Selon Human Rights Watch, ces pratiques pourraient même constituer des crimes contre l’humanité. 

Pour terminer, Leslie Piquemal a souligné que le cas de Malak El-Kashif reflète les conditions dramatiques de détention dans les prisons égyptiennes. La mise en isolement prolongé s’apparente à une torture psychologique selon Amnesty International, et de nombreuses personnes sont récemment décédées dans les prisons égyptiennes suite au manque d’accès aux soins. L’exemple le plus emblématique est le cas de l’ancien président Mohamed Morsi.

En clôture de la conférence, Michel Tubiana a insisté sur le fait que l’Egypte est aujourd’hui l’un des pays les plus sinistrés de la région en matière de défense des droits de l’homme, sous couvert de lutte contre le terrorisme notamment. Cette situation doit nous interpeller en France à double titre : nous sommes l’un des principaux fournisseurs d’armes de l’Egypte depuis longtemps, notamment d’armes qui servent à réprimer des manifestations. Nous avons également un devoir de soutien envers les militants égyptiens qui viennent demander l’asile en France, dans des conditions difficiles, et l’ensemble du mouvement de défense des droits humains français se met à disposition des militants égyptiens pour soutenir leur action.

Tous les intervenants se joignent ainsi à la campagne internationale pour obtenir la libération de Malak El-Kashif, et exigent des autorités françaises qu’elles fassent pression sur le régime égyptien à cet effet. De plus, tous les intervenants s’accordent à dire que la défense des droits humains devait être placée en priorité dans le cadre des relations bilatérales entre la France et l’Egypte.

En outre, la lettre ouverte signée par une trentaine d’organisations internationales et adressée à de nombreux Parlementaires Européens, Parlementaires de plusieurs pays européens et Rapporteurs spéciaux de l’ONU, afin de faire pression sur les autorités égyptiennes pour obtenir la libération de Malak El-Kashif, a été distribuée aux personnes présentes à la conférence de presse. 

Lien vers la lettre ouverte : https://www.ankhfrance.org/malak 


Lien vers la vidéo de la conférence : https://www.facebook.com/ankhfr/videos/2259782150939495/

Pouvez juste rajouter les contacts presse suivants:

Association ANKH, Nicolas Gilles: n.gilles@ankhfrance.org, 0624003899

Cairo Institute for Human Rights Studies, Leslie Piquemal: leslie@cihrs.org

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A press release by Ankh association that can be found here: https://www.ankhfrance.org/conference-de-press

For information in English, click here.

Interview With Ankh Association

TL: A mutual friend and queer activist in Cairo was helping me find a place to stay in Paris only a few days before my trip. I somehow end up sleeping on your couch in the suburbs of Paris.

You two make the Ankh Association that supports LGBTQQI and HIV+ folks in the Middle East through an arts advocacy campaign. Can I ask, how you got here? Back in Paris and making Ankh?

ANKH: First things first, Nicolas is a French activist who has been involved for many years in various collectives defending minorities’ rights in France (LGBTIQ, women, migrants, etc.) while working in cultural cooperation between France and the Middle-East. Taha is Egyptian and has also actively been involved in the Human Rights field in his country, both as an activist and on a professional level. We met a few years ago in Egypt, where we were both involved in the local LGBTIQ community. By the end of 2016, due to different circumstances, we also began to be more involved with the HIV+ community, witnessing the numerous challenges and difficulties that one might have in Egypt in order to access testing, treatment, and especially dealing with religious and social stigmatization. For instance, we realized that there was almost no center where one can go to get tested, and the few existing places are being closed by the government. Now the only places where you can get tested are in government-run facilities, which are already in a very small number. Regarding the treatment, you also need to go to the government to be allowed to have access to it, which usually takes months, you never get to know the results of your test, sometimes the medicine is not available for weeks, or they change it without telling you… Of course not mentioning the way that HIV+ people are being treated by doctors and nurses, which most of the time results in them avoiding going to hospitals or doctors at all.

So when we came to France in early 2018, we started thinking about how to help change the situation there, so we decided to make an NGO that will be able to both support HIV+ and LGBTIQ people in Egypt, as well as to advocate and educate on matters related to sexual health, sexual orientation and gender identity, human rights, etc. This is why we established the ANKH association, and the first thing that we worked on was a sexual health campaign called ‘Know More’.

TL: The Know More campaign is online, and the byproduct is a traveling show called Points of Life for which you already have shows in Lyon and Grenoble lined up and 10 participating artists. How does it work? And, what is your goal … what will the viewing public understand after attending one of your events. Is there something you want them to know (or do) about HIV conditions in the region?

ANKH: We started the Know More campaign as an online Facebook page in Arabic, French and English, aiming to raise awareness in the Arab-speaking communities about sexual health issues, and HIV was, of course, a very big part of it.

In order to reach a different audience in Europe and to make more people aware of the challenges that HIV+ people in the Middle-East are facing, we decided to make an art exhibition based on testimonies by people living with HIV in Egypt that will be showed in various European cities.

So we had an open call out for 2 months asking people who are living with HIV in Egypt to send us artworks expressing their personal experiences, either through a small video, voice recording, photo, or text… We ended up receiving up to 8 pieces, from people of different ages, locations, and genders, each depicting how these people manage to live with HIV in their country.

We thought that setting up an art exhibition as a part of an advocacy campaign is a really effective way to reach people, as it is based on direct testimonies, thus creating a direct connection with the audience, through very simple art forms like mobile videos, photos, or recordings that are accessible to anyone.

TL: OK, then what if another city wants to have the Points of Life exhibition. Would you take it anywhere or do you prefer that it be received in a specific way (locations) whereby your overall strategy is advanced?

ANKH: We will be more than happy to see Points of Life being exhibited in various cities around the world! The whole point of the project is about encounters and sharing experiences, especially with different kinds of audiences. One thing that we are focusing on is for the exhibition to be shown in very different types of places, sometimes LGBTIQ centres, or art spaces, community centres, etc… Our technical requirements are really basic so it’s really easy to make it travel from one place to another. Also, the exhibition is usually introduced with a small speech about the situation of people living with HIV in Egypt, but we also like to have it linked with a more entertaining event like a movie screening, food, concert, party… Everything is possible, depending on the place where it is organized!

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To learn more:

Know More Campaign: https://www.facebook.com/know.more.campaign
Ankh Association: https://www.ankhfrance.org/

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.]


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