[*Working together with the City of São Paulo office of Human Rights, George Ferraz prepared (styled) two downtown cultural spaces for Love Positive Women 2020 with the theme of Yemanjá and using the posters designed by Thiago. A message from the Office of Human Rights was distributed along with Valentines Day cards. The Human Rights flier encourages HIV+ women to use the city’s three citizenship centers for meetings any time of the year, and provides a QR Code to find more info easily. Both Tapera Taperá bar and esponja spaces in São Paulo hosted Love Positive Women-related info / set-ups. Thiago made the candles for an event in NYC held on February 9th. George helped with the event too, making some more cloth hearts, like the ones distributed in São Paulo and Khartoum. There were extra hearts and we mailed them to Puerto Rico with Valentines cards. Some also went to the cast of I, OF COURSE, WAS LIVID, a Love Positive Women-affiliated event at Housing Works bookstore. And, about 15 leftover candles go on to the VisualAIDS Women’s Empowerment Art Therapy Workshops. Thanks guys! xo, Todd]
[*When I asked NYC-based artist Thiago Correia Gonçalves if he’d like to help make a Love Positive Women event, he proposed making Bobó (shrimp and cassava stew) for Yemanjá, the goddess for fishermen who is celebrated on February 2nd in Brasil. When I asked poet Brad Walrond to participate, I’d already seen a poem ‘Yemaya’ in his forthcoming book Every Where Alien. He offered his 1986, Yemaya and other poems. DIG Ferreira, Jesse Hawkes, Livia Alexander, George Ferraz and others helped out. George made another batch of cloth hearts for attendees to the February 9th, NYC event. In addition to Bobó, Thiago made dendê or palm oil-infused candles that each guest would light upon arrival and then take home as a keepsake from the night. Thiago let me help a little making the wax and filling the candles the night before … and puréeing the cassava. xo todd]
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.
By Power Paola
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.
by Power Paola
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.
I enjoyed having a very special and unique friendship with few yet very unique persons. As a Sudanese woman, it is not a frequent thing to happen. That adds more allure to the whole thing, it is such a blessing, a grace, and a gift from the greatest lover ever: “Allah,” I muchly thank for his almighty!
Found Todd once again online in the last year, and he talked to me about the Love Positive Women Project, introduced me to the idea and website, and I tuned in – in no time – actually, as I had already been with him since the very beginning.
Recently, unconditional love was something that settled in my thoughts and dreams, so it wasn’t strange to have my digital steps stumble upon such a lovely project. Feeling the necessity to participate and do what I have to do, I talked to one of my friends and she agreed to participate all at once. I talked to a few more, and got only two to stand up with me and they were more than enough, Fatima, Randa, and Sharif, all of them are ready to hold a meeting where they conquer – with love – the stigma castles that are spread all over our community!
I was happy to get their support and proceed in finding a tailor to make some hearts, according to George’s design, to give away as a living memory for this living love. We are not sure if we are ever going to meet a real HIV+ women or even men, we are not sure we will ever see an AIDS patient to show our sweet feelings to. Though we prepared the heart anyway and will provide them to people who are willing to hand them out to HIV+/AIDS patients, women and men, to show them that it is impossible to find a lit up-heart in the darkness of a collective state of denial!
I hope we can meet at least three groups during these 14 days of love for Love Positive Women, and that we will put the seed for unconditional love in the heart of Sudan, that one day will provide its fruits for all!
Thanks Jessica, Todd, George, Paula, et all.
Love for all positive women, men and children!
________________________
لنحبّ المتعايشات
Love Positive Women
حملة للحب نهديهه للسيدات حاملات فيروس نقص المناعة المكتسب، تقام كل عام في النصف الأول من شهر فبراير. حملة عالمية،
ابتدأت فكرة في عام 2012 وخرجت من القلب تنبض بالحب في العام 2013.
الهدف من هذه الحملة هو رفع الوعي حول النساء والفتيات المتعايشات مع فيروس نقص المناعة المكتسب، وذلك عبر توظيف
وسائل التواصل الاجتماعي لنصع سلسلة من العبارات الودودة في المجتمعات المحلية. وفي ظل عيد الحب، تمثل حملة لنحبّ
الإيجابيات منصة للأفراد والمجتمعات لمشاركة الحب من خلال أنشطة عامة أو خاصة، وتقديم الرعاية للنساء المتعايشات مع
فيروس نقص المناعة المكتسب.
تتجاوز حملة لنحبّ المتعايشات الحب الرومانسي إلى المحبة المجتمعية العميقة، والعدالة الاجتماعية. هي نداء للعمل. وتتطلب من
المشاركين قضاء بعض الوقت في التفكير حول ما يمكن تقديمه كنساء متعايشات أو حلفاء لهن، لتوفير شيء من المحبة تجاه
المتعايشات. يمكن تحقيق هذا التغيير من خلال الانشطة. والعمل من مركز قوة، حيث يركز مشروع لنحبّ المتعايشات Love
Positive Women على فكرة التواصل المشترك، وبناء العلاقات، وحبّ الذات، وحب المجتمع. وعند العمل من القلب وبأمر
الحب، تتبدى أمامنا عددا لا نهائياً من الطرق لبناء مجتمعات قوية. بينما تنعقد حملة لنحبّ الإيجابيات بشكل أساسي في الفترة 1-14
فبراير، فهي تظل رمزا يبينن كيف يكون العالم مختلفاً أثناء العام.
لقد شاركت مجموعات عدة من 45 بلداً وأكثر في تغيير الحيوات ووضع بصمة مختلفة من خلال أنشطة الحب. لنحبّ المتعايشات
مشروع مستمر أسسته جيسيكا وايتبريد الفنانة والعضوة في Visual AIDS . ستشارك مبادرة الحبّ حتى الألم Luv Til It
Hurts في الاحتفاء بالنساء الفنانات المتعايشات مع فيروس الأيدز في مجتمعنا من خلال تسليط الضوء على واحدة منهن في كل من
الأيام الأربعة عشر من فبراير 2019، ونحن في توق شديد لتكريم سيداتنا!
وبدورنا نشجّع الجميع في محيطنا بأن يشاركوا ويضعوا بصمتهم الخاصة في مجتمعاتهم وينشروا الحبّ على وسائل التواصل
الاجتماعي #lovepositivewomen
@lovepositivewomen<3
“أنا مريضة إيدز ونفسى أتعامل كبنى آدمة، معملتش حاجة غلط علشان المجتمع ينبذنى ولما بمرض مش بلاقى دكتور يعاملنى كويس، وبقيت أخاف من الناس فاضطرت لارتداء النقاب خوفا من تعرف الناس على شخصيتى عند اللجوء لتلقى العلاج. “
“فى عام 2006 ظهرت الأعراض الأولية كإسهال وترجيع وسخونية، وفقدت الكثير من وزنى فبعد أن كان 83 كجم أصبح 45 كجم دون أن أعلم السبب، وعلى الرغم من أنى أجريت الكثير من الفحوصات والتحاليل التى حيرت الأطباء وشخصها الكثيرون بأنها مشاكل فى المعدة أو مرض الدفتيريا”.
“استمرت الأعراض وفقدان الوزن المحلوظ، و فى شهر 5 عام 2007، تم حجزى فى مستشفى القصر العينى لمدة 3 أيام فى قسم الباطنة، ونتيجة لاستمرار الإسهال وبعد إجراء الأطباء جميع الفحوصات لم يتعرفوا على السبب، فمكثت بالمستشفى لمدة 21 يوما، ولم يتم التوصل لتشخيص المرض، وبعد حيرة الأطباء فى التشخيص قرروا إجراء تحليل الإيدز وظهرت النتيجة إيجابية ثم بعد ذلك طلبوا من زوجى إجراء التحليل أيضا، وعند ظهور النتيجة لم توجد أى سرية فى المستشفى وتم إخبار جميع الأشخاص المتواجدين بها وإخبار أهلى وأهل زوجى الذين كانوا متواجدين معى”.
“بعد 21 يوما عندما تم التعرف على إصابتى بمرض الإيدز، تم عزلى فى آخر العنبر وإحاطة المكان الذى أتواجد به بالستائر، ثم بعد ذلك قاموا بإفراغ غرفة الغسيل التى يقوم فيها الأطباء بتغيير ملابسهم ووضعونى بها، خوفا منى، كما أن الأطباء كانوا يرون مواعيد حضورهم من بعيد من خلال الإضاءة بالكشاف وتم تركى 4 أيام معزولة فى غرفة الغسيل، وتم تحويلى مرة أخرى إلى حميات العباسية حتى يجرى التحليل بالمعامل المركزية وظهرت أيضا إيجابية.”
___________________
« Je suis atteinte du SIDA, et j’aimerais pouvoir me comporter en être humain. Je n’ai rien fait de mal pour que la société me rejette comme ça, et quand je tombe malade je ne trouve pas un médecin qui me traite convenablement, et j’en arrive à avoir peur des gens. C’est pour ça que je me suis mise à porter le niqab, de peur que les gens n’apprennent ma condition lorsque je vais récupérer mon traitement. »
« En 2006, les premiers symptômes sont apparus: diarrhée, vomissements et fièvre. J’ai perdu beaucoup de poids, je suis passée de 83 à 45 kg, sans en connaître la cause. J’ai fait de nombreux tests et examens, mais les médecins et autres spécialiste étaient toujours dans le flou, pensant que c’était des maux d’estomac ou la diphtérie. »
« Les symptômes et la perte de poids ont continué à se développer, jusqu’en mai 2007, où j’ai été admise à l’hôpital de Asr El-Ayny pour 3 jours au service d’hépato-gastro-entérologie en raison de la diarrhée persistante. Après avoir encore réalisé tous les tests possibles et imaginables, les médecins n’arrivaient toujours pas à en déterminer la cause. Je suis donc restée 21 jours à l’hôpital, et puisque les médecins n’arrivaient à aboutir à un diagnostic, ils ont finir par prescrire un test du Sida, qui s’est avéré positif. Quand le résultat est arrivé, ils ont également demandé à mon mari de faire le test. Lorsque les résultats sont sortis, le secret médical n’a absolument pas été respecté, toutes les personnes présentes à l’hôpital à ce moment-là ont été mises au courant, de même que les membres de ma famille et celle de mon mari qui étaient présents. »
« Au bout de 21 jours, quand nous avons enfin eu le diagnostic de l’infection par le Sida, j’ai été placée à l’isolement dans une chambre, bien cachée derrière des rideaux. Ensuite, ils ont vidée le vestiaire, la salle où les médecins se changent, et m’ont déplacé là-bas. Ils avaient peur de moi. Ils venaient vérifier leurs horaires de loin, et avec une lampe torche. Ils m’ont laissée 4 jours isolée dans la buanderie, avant de me transférer à l’hôpital de Abbasseya, pour que je puisse faire un autre test au laboratoire central, qui s’est également avéré positif. »
___________________
“I am sick with AIDS and I’d like to treat myself like a human being. I didn’t do anything wrong for society to reject me; and when I get sick, I can’t find a doctor who treats me well, and I’ve become afraid of people. This is why I had to wear a niqab for fear that people would get to know my condition when I come to take my treatment.
In 2006, the initial symptoms appeared as diarrhea, vomiting, and heat. I lost a lot of weight; I went from weighing 83 kg to 45 kg, without knowing the reason. I conducted many tests and analyses that puzzled doctors, many diagnosed stomach problems or diphtheria.
Symptoms and weight loss persisted, until May 2007, when I was admitted into the Al-Kasr Al-Ainy Hospital for 3 days in the Hepato-Gastro-Enterology Department as a result of the continued diarrhea. After the doctors performed all possible tests, they still did not find the reason. So I stayed in the hospital for 21 days, the diagnosis of the disease was not reached and the doctors were confused. They finally decided to perform an AIDS test, and the result appeared positive. Then they asked my husband to perform the test as well. When the result appeared, there was no medical confidentiality whatsoever, the whole hospital was informed, as well as my family and my husband’s family who were there.
After 21 days, when I was finally diagnosed with AIDS, I was isolated in a ward and surrounded by curtains. Then, they emptied the laundry room where the doctors used to change their clothes and they put me there. They were afraid of me. When the doctors needed to check their schedules, they were doing it from afar and with a flashlight. They left me for 4 days isolated in the laundry room, then I was transferred again to the Abbaseya hospital where another test was done in the central laboratories and it also appeared as positive.”
