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All photos Š2013 Andri Tambunan Foreword by Leslie Butt Ph.D. University of Victoria Canada Text by Andri Tambunan Design of photobook Januar Rianto All rights reserved. No part of this publication may be reproduced in any manner without permission. Printed in Indonesia www.andritambunan.com
aga i nst ALL ODDS T h e HI V/ AIDS E pi de m ic i n Pa pua
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For so many world travelers, the large bird-shaped island sitting just north of Australia seems like a fascinating place to visit. But too few people take the time to explore the island of New Guinea, or to meet some of the over 1,000 cultures who make the island their home. If they did travel there, they would see extraordinary cultural diversity, from the boats and canoes of the fishing cultures along the vast coastline, to the small grass huts of tribes hidden high in the mountains. The visitor would also quickly learn about the island’s complicated colonial history. They would learn why this mountainous, forested thousand-mile-long island was divided in two by colonial powers in the late 19th century, and why the western half of the island is still under Indonesian rule, when the eastern side has been the independent nation of Papua New Guinea since 1975. They would find out, on the Indonesian side, how one million indigenous Papuans were forced in the 1960’s into being part of the Indonesian province of Papua, how they now speak the Indonesian national language, how they are educated according to Indonesian norms, and how they struggle to thrive in the most militarized region of the globe. Visitors to the island would quickly see the long-range outcomes of political assimilation that is depressingly familiar to anyone who knows about indigenous peoples in colonial conditions: poor health; lack of political power; few opportunities; and sustained
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discrimination. And along with these struggles, Papuans are also bearing the brunt of the HIV epidemic. The visitor soon sees that Papua has the fastest growing HIV/AIDS epidemic in Asia. The prevalence rate for HIV is far and away the highest in Indonesia, with around seven percent of the indigenous Papuans estimated to be HIV-positive. In a word, the visitor would see that Papua is in crisis. But very few people make the effort to go to Papua and see the Indonesian province. Instead they move on, perhaps to easier places, and it is their loss. Not so Andri Tambunan. Born in Indonesia but raised in the United States, Andri returned to his home country of Indonesia with a desire not only to see and explore Papua, but to document the struggles of indigenous Papuans as they confronted HIV. Andri was trained in fine arts photography, but he became a photographer with a conscience by coincidence during the 2008 terrorist attacks in Mumbai. He grabbed a camera as the events unfolded around him, and simply sought to document the stories he saw. Photography, he realized, could tell hidden stories in difficult conditions, and could allow otherwise silenced voices to be heard. Andri brings that awareness to his six-month journey through the province of Papua in 2012, where he traveled across the span of the island, documenting many of the challenges faced by HIV-positive Papuans.
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He covered thousands of miles of the province’s vast and beautiful terrain, traveling by plane into the high mountains of the interior, by car and by moped around the few cities and towns, and on foot to many remote villages. He went as far east as the mountains around Oksibil, abutting the border with Papua New Guinea, and all the way west to the coastal cities of Sorong and Manokwari. He spent hours with advocates from non-governmental organizations everywhere he went, watching their struggles to get HIV-positive Papuans to trust the health care system, to gain access to drugs that should have been readily available, and to stay on the drugs even when Papuans lacked the basics of food and guaranteed shelter. He talked to HIV-positive Papuans everywhere he went, listened to their fears around stigma and discrimination, and learned how they struggled to get decent care. He found out about the alternative remedies that Papuans try when they don’t feel they will be healed at the poorly-run clinics and hospitals. And he took photographs throughout; strong, honest images that paint a stark and compelling portrait of how hard things really are. I have been researching HIV in Papua for over a decade, and I am struck by the clarity of vision Andri Tambunan brings to the task of documenting this troubled land. I am just as impressed by how readily he managed to get Papuans to talk to him, to show him their remedies,
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to confess their fears, and to allow him to document through photographs some of the most intimate and terrifying moments of their lives. His commitment to telling the whole story surely opened many doors. The powerful images he presents are a testament to the extent of the suffering and challenges HIV brings for Papuans. These images remind us that for many outside of the developed world, HIV is still a death sentence, and that much needs to be done, in Papua as elsewhere, to allow HIV-positive persons to live their lives with respect and dignity. By Leslie Butt, Ph.D. University of Victoria Canada
The provinces of Papua and West Papua, formerly known as Irian Jaya, are located in easternmost Indonesia. They are home to only one percent of Indonesia’s 230 million people; however, almost 40 percent of all HIV/AIDS cases in the country are located there. In the two provinces’ (which I call “Papua,” as is the norm in the region), HIV/AIDS infection rates are the highest in the country, 15 times higher than the national average. The people of Papua are living and dying in the midst of the fastest growing epidemic in Asia. Each year in Papua the number of recorded cases of HIV increases by almost 50 percent. Current estimates suggest at least 3 percent of the adults in the province are HIV-positive. In an epidemic where the virus is transmitted mostly through heterosexual relationships, men and women, children, husbands and wives, and in some cases entire communities are under attack. Although they say that HIV/AIDS does not discriminate, in Papua the epidemic follows along the fault lines of race: about three-quarters of those infected are indigenous Papuans. Due to economic disparity and a lack of political power, indigenous Papuans are more susceptible to poverty, malnutrition, unemployment, and illiteracy than the Indonesian migrants who have relocated to the province. Already at a disadvantage, indigenous Papuans lack access to the information and education necessary to make informed decisions to reduce vulnerability to HIV. They also have limited access to preventive services, adequate health support, and treatment. Consequently, no other ethnic group in Papua bears as high a risk of transmission, stigmatization, marginalized well-being, and mortality related to HIV/AIDS as do indigenous Papuans. Against All Odds uses images and text to explore some of the reasons why indigenous Papuans are contracting HIV, including limited economic opportunities, lack of HIV/AIDS education and awareness, insufficient access to health services, inadequate support, discrimination, and stigma. One of the project’s goals is to put face to this regional crisis by showing how they try and come to terms with their situation. Ultimately, it aims to raise awareness about Papua and improve access to care for indigenous Papuans facing or living with HIV/AIDS.
Papua is a vast province and has abundant natural resources such as copper, gold, and timber. However, most indigenous Papuans live on less than $1 a day. The incidence of poverty in Papua is the highest in the country; double that of the national average. Papua was acquired by Indonesia in 1969 in a disputed vote rejected by most Papuans. For the past four decades Papuans have sought independence. A transmigration policy implemented by the federal government relocated almost a million non-Papuan migrants from surrounding provinces as part of the “Indonesianization” process. These migrants, along with another million voluntary migrants, dominate most of the region’s trade and business, thereby controlling authority and dictating commerce in Papua. Imported goods such as rice, medication, and gas are brought into Papua and sold at exorbitant prices, making the cost of living the highest in Indonesia. Coupled with unequal access to education and training, opportunities for indigenous Papuans to advance economically are limited. The consequence is economic inequality—wealthy migrants and poor Papuans—and a marginalized indigenous population where poverty, unemployment, malnourishment, illness, illiteracy, and discrimination are the norm. Economy & Migration
In Papua, prostitution is a profitable industry. The influx of non-Papuan migrants into the region brings sanctioned prostitution. Brothels, often disguised as clubs, karaoke bars, and massage parlors, hire mostly non-Papuan sex workers. These formal establishments employ 4,000-plus sex workers who earn ten times more than their Papuan counterparts. Above and beyond the financial discrepancy, the biggest difference between Indonesian brothel workers and Papuan sex workers is the disproportionate access to HIV preventive care and support. Most HIV and Sexually Transmitted Diseases (STDs) intervention programs are geared towards sex workers in brothels. For example, in Jayapura, the capital of Papua, there are over 30 brothels, and non-Papuan sex workers in these establishments undergo monitored testing and counseling for STDs every month, and for HIV every 3 months. As a result, they are much better informed about HIV/AIDS and have better access to care and support than indigenous Papuan sex workers. brothels
For many young Papuan women in urban and developing areas, poverty and economic pressures have forced the exchange of sex for goods, cash, or food as an accepted mean for survival. Unlike non-Papuan brothel workers, Papuan sex workers often seek clients in public venues and have sex outside, by the side of the road, or in urban dwellings. Operating outside formal establishments, the exact number of Papuan sex workers are unknown but are estimated to be at least double the number of non-Papuans. Despite their high numbers, intervention programs targeting Papuan sex workers have not been a priority and most of them rarely have access to information, preventive services and support for HIV/AIDS and STDs. With limited access to information and support, Papuan sex workers are less informed, have lower rates of condom usage papuan sex workers
Mary is an 18-year-old Papuan sex worker living in Jayapura. She has never been tested for HIV. Mama Fin brought her and two of her friends to the Hamadi clinic to get tested for the first time in 2012. The three of them crammed onto one chair during the brief counseling session. No room to add extra chairs nor for privacy and anonymity. Anxiety, fear, and vulnerability found them
(5% compared to non-Papuans with a 70% rate of condom usage), and are more likely to get infected with STDs and HIV than their counterparts in regulated brothels. In the urban context of Jayapura and Timika, where most of the region’s HIV cases have been recorded, intervention programs and assistance for Papuan sex workers are still lacking. Mama Fin, a social worker with the non-profit Mother’s Hope Foundation, is one of the few advocates in Jayapura that provide education and support for these young girls, including condom education, temporary housing, and HIV test assistance.
huddling for comfort, followed by relief and uncertainty while the test was taken. In the end, the test result for Mary was positive.
In Papua, the majority of HIV transmission occurs through sexual encounters. The consistent use of condoms is perhaps one of the most effective ways to reduce or prevent HIV infection. Nevertheless, condoms are seen as taboo and frequently associated with sin, misconduct, and shame. Condom usage is often opposed or disregarded by religious and community leaders, and rarely discussed in public. Moreover, health staff endorses abstinence more frequently. Due to the lack of low condom education and promotion, the use of condoms is extremely low since many people in Papua do not know how to use them and many of them are embarrassed to obtain it despite its availability. More importantly, they do not understand the benefits of condom usage in reducing or preventing STDs and HIV infection. condom education and promotion
For many Papuan youths, their first sexual encounter can take place during their early teenage years. Some are sexually active by the time they reach puberty. Life Skills Education (LSE), a curriculum designed by UNICEF that provides education on human reproduction, pregnancy, sex, Sexual Transmitted Diseases, and HIV/AIDS is taught in many high schools throughout Papua. However, this essential educational course is mainly available in schools located in cities but not in rural areas. Moreover, LSE does not reach many indigenous Papuan youths because many of them are not able to attend high school. In most cases teachers responsible for teaching this course lack sufficient training and essential materials, such as books with up-to-date information and visual aids, to adequately educate their students. They often encourage their students to seek additional information on the Internet. Also, detailed information on condoms is regularly excluded in lectures and reading materials because of the general perception that it will endorse pre-marital sex. As a result, students carry incomplete information, misconceptions and misunderstandings into adulthood, which increases their vulnerability to the epidemic. youth education
Providing accurate and reliable information is an essential step to educate and empower the public to make informed decisions and reduce vulnerability to HIV infection. Awareness of HIV/AIDS is very low among indigenous Papuans because educational materials remains inadequate and information is delivered inefficiently. For example, billboards related to HIV/AIDS in Jayapura rarely mention condoms as an effective way to reduce or prevent infection nor do they provide locations to the nearest Voluntary Counseling and Testing center (VCT). Therefore, despite their strategic placement in crowded markets and busy streets, billboards are not as effective in promoting awarenessand providing reliable information. Other HIV/AIDS educational materials used in Papua such as pamphlets are often ineffective in reaching indigenous Papuans because their content frequently uses images of non-Papuans, which Papuans do not relate to. Furthermore, many indigenous Papuans have limited literacy and these booklets mainly use Bahasa Indonesia rather than the local dialects. Perhaps one of the most efficient ways to promote awareness and educate the public on HIV/AIDS is by playing informative movies at open forums. In Wamena, YUKEMDI, a local NGO run by indigenous Papuans, plays an educational movie in rural villages that uses the local educational methods & materials
dialects and features native Papuans. The film is both entertaining and informative, and often attracts hundreds of villagers to the showings. Villagers receive additional information after watching the movie and are encouraged to ask questions in order to promote communication and open discussions. However, these screenings are not conducted as often as they should be despite their effectiveness and demands from village elders. YUKEMDI is unable to reach and provide HIV/AIDS education to rural villages because they have insufficient funding and support to cover the costs of fuel, transportation, and equipments for the movie screenings.
Many health facilities that provide services and support for HIV/AIDS are located mainly in cities, far away from the majority of indigenous Papuans who live in rural villages. Due to Papua’s arduous terrain, these health centers are often reachable only by planes or sport utility vehicles. However, the high costs of fuel and expensive fare for transportation means that native Papuans living outside urban settings have limited access to essential care and treatment. In Jayawijaya, a mountainous region in central Papua, the average cost for a round trip on public transportation to a neighboring town could access to care and adequate support
Terry traveled hundreds of miles from his village in Lani Jaya to reach the main hospital in Wamena. His family paid over $100 to charter a vehicle for transportation. Already in the late stages of AIDS (Stage 4), Terry was carried onto a stretcher because he was too weak to walk. He had stopped taking his ARV medication because he lived too far from the health center that provided refills and follow-up care.
cost as much as one’s daily earning. Gas can cost up to $20 per gallon and one might have to travel a full day or more just to reach the nearest health center. As a result, those who are too sick to make the long journey or cannot afford to pay for transportation end up without treatment. And those who are fortunate enough to get to a clinic or hospital often wait too long before making the trip. In many cases, they arrive at the medical center in critical condition with little hope of surviving. In Papua, all indigenous Papuans have access to health insurance, called Jamkesmas or Jaminan Kesehatan Masyarakat Miskin, provided at no
cost by the provincial government. However, inadequate facilities, limited availability of medical equipment and medicines, and inexperienced health staff have made it difficult for indigenous Papuans to get tested for HIV/ AIDS and receive quality assistance, counseling, and long-term care. Many health staff in Papua still lacks medical training to run and manage VCT clinics. In other places, even when health personnel have sufficient training, their clinics are often overcrowded and inadequate, lacking proper equipment such as testing reagents, centrifuge, HIV rapid tests, CD4 machines, and medicines to treat opportunistic infection and antiretroviral
Mandisa (25) who is in the late stage of AIDS clings to her life. After being sick for many months, Mandisa’s family finally brought her to the hospital to get medical treatment. Due to a lack of experienced health staff, family and friends must stay by her side the entire time. Her condition suddenly deteriorated overnight and her body went into a state of shock and she lost consciousness. A tear rolls off the face of Mandisa’s face as she lay on the hospital bed at the brink of death.
therapies. In some cases, health care workers fail to monitor and maintain the availability of necessary supplies and medicines to avoid shortages. In Koya Barat, a small town 45 minutes away from Jayapura, the capital of Papua, the counseling area used by the clinic is a storage room and the last time doctors and counselors received training on HIV/AIDS was in 2008. Moreover, ten people wanting to get tested for HIV had to be turned away because the clinic did not have reagents to conduct HIV rapid tests.
Located in the heart of the Baliem Valley, Wamena is now an urbanized town and the commercial center of Papua’s mountainous region. Wamena currently has 1,894-recorded HIV/AIDS cases, and the number continues to rise. The main public health clinic in Wamena is swamped with over 200 patients a day seeking various forms of health treatment. Those who want to get tested for HIV must line up in the morning and register with everyone else. The cramped HIV testing and counseling room is packed with several clients at a time, leaving no room for privacy and confidentiality. Counselors are unable to spend much time educating patients and addressing their questions. The lab responsible for processing the HIV test must also conduct lengthy tests for various illnesses including malaria and tuberculosis. The overwhelming burden on both the staff and the facility reduces the quality of care. Despite an increasing desire from the public to get tested for HIV, the clinic limits HIV testing to only 10 patients per day. The director of the clinic believes that the cap is necessary to maintain quality control and ensure accurate test results. Nevertheless, sometimes as many as 25 patients visit the clinic to get tested for HIV. When they are turned away, many patients are discouraged to return. wamena clinic
Due to a lack of HIV/AIDS education, limited access to health services, and strong pre-existing cultural beliefs about illness, many Papuans who are desperate for a cure turn to alternative medicines and traditional methods of healing. Sometimes it involves cutting different parts of the body to drain “dirty” blood believed to cause the sickness. Fruit potions such as the renowned red fruit potion (buah merah) are also extremely popular for its perceived healing capability. In some cases, those who are already taking ARV medication abandon it to take expensive alternative medications such as Herbal Life vitamin supplements because they are promised an immediate cure. alternative medicine and traditional healing methods
David has been HIV-positive for almost 4 years. His wife is also HIV-positive and they are both taking ARV medication. However, David did not take his medication properly and his health has declined significantly. Living in a rural area of Lani Jaya, David’s village lacks an adequate health facility, and he must travel hundreds of miles to Wamena to receive care. Staying in a relative’s honai or traditional hut, David’s condition deteriorated. YPKM or the Foundation for the Development of
One of the most common practices in the highlands to diagnose and cure HIV is by conducting a traditional ritual termed adat. This involves killing a pig and examining its blood, heart, lungs, and kidney. After cutting the pig open and inspecting its internal organs, the practitioners of adat remove what they interpret as parasites or cancerous parts that they believe caused the sickness. Cleaning the pig’s flesh by washing it with water would also “cure” the person’s illness. Performing the adat ritual is expensive since a pig can cost hundreds of dollars. The treatment does not work despite the strong cultural belief behind it. In the end, after killing numerous pigs and spending a fortune, many people give up hope. By the time they finally decide to go to the hospital, their condition might be too critical with little chance for survival.
Public Health in Wamena chartered a vehicle to take David to the emergency room. Frail and in poor health, David barely made it to the hospital. His white bloodcell count was dismal at 24, instead of the typical 700. At the hospital, David received saline solution and medicines that significantly improved his condition. YPKM also gave David rice and milk to help him with his recovery. Nevertheless, after three days in the hospital, David forcefully checked himself out because he wanted to
conduct the adat ritual, and the health staff could not prevent him from leaving. David spent several hundred dollars to purchase two pigs for the ritual. However, his health deteriorated to the point where he was unable to stand up on his own. A week after checking himself out from the hospital, David chartered a vehicle to go back to his village to die.
Due to shame and fear of discrimination or punishment, it is common for husbands who are HIVpositive to keep their status from their wives or vice versa. Even after testing positive for HIV, many still disregard using condoms to avoid drawing suspicion. As a result, the HIV virus is often passed between spouses. hiv transmission between spouses
Dewi (20) is a young wife who died from AIDS after contracting HIV from her husband. Dewi kept her status a secret from her family. Dewi’s family, who were unaware of her real illness, used a traditional healing method of cutting her body to let out “dirty” blood in an attempt to cure her. Dewi’s body was displayed in her finest clothes as family members and neighbors mourned her death inside her parents’ honai. A local NGO, called Caring Hands, donated money to buy woods for her
cremation since Dewi’s family was too poor to have her buried. Outside, men cut woods into smaller pieces and stacked them to prepare for her cremation. A pastor led the ceremony and prayed before Dewi’s body was place on top of the funeral pyre. As the fire burned, heavy rain poured as if to extinguish the flame. Under the protective cover of an umbrella, Dewi’s parents watched their daughter’s cremation in sorrow.
In Papua there is a higher recorded number of housewives infected with HIV than sex workers. In most cases, housewives contracted HIV from their husbands. Pregnant wives who are unaware that they are infected with HIV often pass the virus onto their infants. Fortunately, HIV testing on pregnant women is a mandatory practice conducted during pre-natal care. Nevertheless, the transmission of HIV from mother to child still occurs, especially since many women still have limited access to health services and pre-natal care. hiv transmission between mother and child
Becky and Dessy are twins and they are both HIVpositive. However, neither of them had ever taken ARV even when they were pregnant. Dessy’s daughter, Yhoana, died last year from a sudden sickness and Dessy’s health has declined significantly. Becky recently gave birth to a baby boy she named Gabriel, and he often gets sick. Becky’s one-and-a-half year old daughter, Emma, also gets sick frequently and she has spent many days in the hospital. Emma died suddenly before she turned two
years old. None of Becky’s children have been tested for HIV because the test cannot be administered before the age of two. However, their frequent illnesses suggest that they are infected.
If taken properly, ARV has been proven to prolong the survival rate of people living with HIV/AIDS, and enables them to live a productive life. Despite the fact that people have been dying from HIV/AIDS related diseases since the 1990’s, the Indonesian government only started providing ARV therapies in 2003. In that year only seven packages of ARV were purchased for all of Papua. Each package cost approximately $5000. Today, this vital medication can be obtained at no cost. Despite these advances, ARV is available mainly in cities in Papua. Collaboration between health facilities in urban centers and health staff in rural areas to make ARV more accessible for patients living in the countryside is still lacking. For example, in Oksibil, a developing town in the mountainous region of Papua, ARV is not readily available at the local hospital. Instead, the medicine can only be obtained in the capital city of Jayapura, accessible only by plane, which costs $200 round trip. Also, the endorsement of ARV as a legitimate medicine for HIV/AIDS is still lacking. Sometimes health staff and some educational materials still provide misleading information and the misconception that “there is no medicine for HIV/AIDS.” Hearing this inaccurate information has led many Papuans to believe that any effort to get treatment and care is futile, and so they do not even try. Antiretroviral Medication (ARV)
As a general practice health personnel often evaluate patients for their adherence in taking their medication and keeping up with appointments before allowing them to undergo ARV therapy. Indigenous Papuans tend to fall short of this assessment and fail to return for their check-up because many of them live too far from the health centers. At times, they do not fully understand the benefits of ARV medication and the importance of taking them properly due to poor counseling from the health staff. Also, many of them are unable to keep their appointments or take medication regularly because they still keep their status a secret from their immediate family members or spouse. In many cases, indigenous Papuans who arrive in hospitals are already in the late stages of AIDS, suffering from life threatening opportunistic infections, such as tuberculosis, that have to be treated prior to administering ARV. Due to their grave condition, their body is also too weak to withstand the potential side effects or toxicity of the ARV medication. Furthermore, CD4 machines that are used to test for patient’s white blood cell count to determine appropriate ARV consumption are unavailable in many hospitals. Even if the CD4 machine is available, the reagent cartridge is often in short supply or out of stock. Considering these various factors and obstacles, the government claims that 12% of those who need ARV are taking it, but estimates suggest the actual adherence rate is far lower.
Adequate long-term support for people living with HIV/AIDS is lacking in both cities and rural regions of Papua. A hospice is essential in HIV/AIDS recovery because it provides a place where patients can receive constant care and support. For patients who have to travel to cities to get treatment, a hospice provides a convenient temporary shelter. At times, a hospice also offers a sanctuary for those with HIV/AIDS who are rejected or face discrimination due to their status. However, even when a hospice is available, many patients are reluctant to stay there because they are afraid their status would be exposed to the hospice & long-term care
Hilda walked five days from her village in Yahukimo to reach the town of Wamena. Hilda said she contracted HIV at the age of 11 after an older man raped her. When she arrived in Wamena, she was already in the second stage of AIDS experiencing symptoms of diarrhea and losing more than 10% of her body weight. Fortunately, an NGO field worker from YPKM discovered her at the local clinic and offered her a room in the back of their office. The small room was initially used for storage
surrounding community. For example, in the small remote town of Oksibil, a six-bedroom hospice was built in 2009 but no patient has ever stayed there. The building is now neglected and abandoned. Insufficient funding and mismanagement by health personnel are also two of the other biggest obstacles preventing hospices from providing a continuous care and support to those with HIV/AIDS.
but now functions as a temporary shelter for Hilda and another young girl. At the shelter, Hilda receives constant care and nutritious food such as rice, vegetables, and fish. Within two weeks Hilda had gained 3 kilograms (6.5 pounds) and she has started taking ARV.
One of the biggest obstacles to recovery and rehabilitation for indigenous Papuans living with HIV/AIDS is the lack of adequate nutrition. Due to poverty and because many Papuans have moved away from a subsistence garden culture, many cannot afford to purchase or consume wholesome foods. Papuans who are HIV-positive find it extremely difficult to work or tend their crops. Consequently, indigenous Papuans do not receive sufficient vitamins, proteins and nutrients from their diet. When they fall sick Papuans recover at a much slower pace and most find it extremely challenging to stay healthy. YPKM provides long-term assistance to over 60 people living with HIV/AIDS. Once a month they hand out basic essential food packages to almost half of them. The package includes 2kg of rice, cooking oil, sugar, milk, and infant formula (each costing approximately $25), and they are given to those who are in the late stages of AIDS and mothers who cannot breastfeed their infants. The health condition of almost every person receiving this monthly food package has greatly improved. The distribution of nutritious food not only maintains the overall health of people living with HIV/AIDS but also helps lower stigma. Stigma against HIV/AIDS is often rooted in stereotypes of sick and disease-ridden HIV-positive people. The normal and healthy appearance nutrition
of people living with HIV/AIDS, who are also capable of fulfilling their social roles and obligations, can help reduce negative stereotypes. Many YPKM patients who were initially dismissed by their family members after falling ill experienced less discrimination after receiving treatment. Some were accepted back and received support from family members that had initially rejected them. Thus, providing nutritious foods to people living with HIV/AIDS is perhaps one of the best methods to facilitate rehabilitation and ensure a better quality of life.
Stigma significantly reduces the quality of life and increases the likelihood of suffering and mortality for indigenous Papuans living with HIV/AIDS. ODHA (Orang Dengan HIV/AIDS) is the term often used to label a person living with HIV/AIDS. This label has a negative connotation since HIV/AIDS is frequently associated with dishonor and death and it is often viewed as a curse or retribution for sins or deviant behaviors such as alcoholism, promiscuity, and extra marital sex. Thus, shame, guilt and death go hand in hand with how Papuans see HIV/AIDS. Consequently, fear of abuse, persecution, and ostracism from stigma & odha
Eddie (30) was a schoolteacher in Jayapura. Despite his education and access to health facilities in the city, Eddie did not seek medical treatment when he was diagnosed with HIV because he was afraid that his friends and family members would find out. Instead, Eddie returned to his village when his health declined. He stayed in his parents’ honai but kept his illness a secret and did not seek clinical treatment. The virus progressed into the later stages of AIDS. When Eddie’s condition became life threatening, his family finally brought him to the hospital and he arrived in critical
family members and the wider community has made secrecy the primary concern for ODHA rather than seeking treatment. Since HIV is perceived as easily transmitted through touch or by air immediate family members and the community respond to those with HIV/AIDS by isolating them. Both external and internal stigma perpetuate a sense of shame, guilt, rejection, and hopelessness which makes ODHAs undervalue their social role and their sense of belonging. However, the survival rate for an ODHA significantly increases when they have at least one person they can depend on for support and care.
condition. His CD4 or white blood cell count was 1, when a typical count is 700. Family members gathered everyday at his bedside, waiting and praying. Despite doctors’ attempt to stabilize his condition Eddie passed away in less than a week. Eddie’s body was brought back to his village. Family members, friends, and neighbors mourned his death. The following day, Eddie was buried and hundreds of people, including colleagues and students, attended his funeral.
the story of mama p Mama
P earns a living to support her three children by keeping a small garden and selling the crops at a nearby market. During harvest, she sometimes carries up to 60kg (132 pounds) of vegetables and fruits on her back, and she walks for over an hour to reach her home. She earns just enough money to provide food and to pay for her children’s education. Mama P is a rare success story because not only is she a single mother but she is also HIV-positive. For the last three years Mama P has been taking ARV with the help of Jayapura Support Group (JSG). JSG also provides her with counseling and nutrition assistance such as rice, milk, green beans, and cooking oil to help maintain her overall health and immune system. Although Mama P is in excellent health, she still keeps her status from her children, who only know that she has an ordinary illness. Nevertheless, her children help her by reminding their mother to take her medication and to replenish stock when the supply is low. Any amount of support and assistance for people living with HIV/AIDS is significant in maintaining their overall health and welfare and in providing them with motivation and a positive attitude towards life.
Gary is 11 years old and he is HIV-positive. Gary lost both of his parents to AIDS and he has been taking ARV regularly since the age of four. Currently, Gary lives with his grandmother and younger cousin. To support her grandchildren, Gary’s grandmother sells betel nut in front of the house earning $2-3 per day. Due to her meager income Gary’s grandmother is unable to buy wholesome and nutritious food and vitamins to help maintain his health and growth. Last year the Department of Social Services had to suddenly stop providing milk for Gary. Fortunately, Sorong Sehati, a local community group in Sorong financed by Yayasan San Agustino (YSA), came to the rescue and regularly provides Gary with bread, milk, and monetary assistance to pay for his schooling and transportation to the clinic for check-ups and ARV refills. At one point, Gary experienced discrimination at school when his teacher forced him to sit in the back to isolate him from the other students. Sorong Sehati intervened by providing HIV/AIDS education to the schools’ faculty including Gary’s teacher. Now Gary sits in the front of the class and he hopes to be a doctor one day so he can help people like him. the story of gary
In 2004, Mama Yuli contracted HIV from her husband, whom later died from AIDS. Prior to the diagnosis Mama Yuli had never heard of HIV or AIDS. As a Christian and a faithful wife she never thought that she would get infected. At her worst point, Mama Yuli was just skin and bones weighing only 22 kilograms (48 pounds). After falling ill she experienced discrimination from her neighbors. Kids used to pick mangoes from the tree in front of her house but their parents barred them from coming to her yard due to fear of infection. Mother’s Hope Foundation, another local NGO based in Jayapura, came to her aid and provided her with assistance. They also provided HIV/AIDS education to Mama Yuli’s neighbors and family members, reducing stigma against her. After regaining her health Mama Yuli made her status public by giving a testimonial in front of her church congregation. She courageously disclosed her status and shared her experiences publicly throughout Papua. Mama Yuli’s came forward in an effort to raise awareness, reduce stigma, encourage others to get tested for HIV and to take ARV medication regularly. Ultimately, Mama Yuli wants to prove by example that one does not have to die from HIV/AIDS and that a diagnosed person is still able to provide for their family and live a productive life. In 2012 Mama Yuli celebrated her 8-year anniversary of taking ARV. the story of mama yuli
The story of Mama Yuli first drew me to Papua in 2009. I read a short story about her, and was astounded and intrigued by her incredible courage. Within a week I found myself in Papua, standing before Mama Yuli, listening to her personal account. I learned about the dire situation in Papua firsthand from meeting many others like her. I was an outsider but they allowed me to return to Papua and photograph them in 2012. The reality of the situation was complicated and overwhelming. I did not set out to make a book or to work on a long-term documentary project but having a camera in my hand gave me both a rare privilege and a profound responsibility. Against All Odds explores and investigates the HIV/AIDS epidemic in Papua. This project does not have a political agenda but is driven by humanitarian objectives. One of my goals is to document the HIV/AIDS epidemic in Papua beyond the superficial and the statistics. I also discovered early on that the numbers didn’t add up. Millions of dollars are pouring into Indonesia for HIV/AIDS intervention and support programs. Nevertheless, education and awareness, access to preventive treatment, and adequate support are still lacking in Papua. As one shortcoming feeds on another, a chain reaction takes place. In every city, developing town, and rural village that I visited, I saw suffering and death as a result of this epidemic. I documented the daily lives of individuals confronted with rejection, discrimination, isolation, despair, and death. But I also encountered their unyielding resiliency and their courage and conviction to fight for their survival and their loved ones. Their unwillingness to give up kept me taking photographs when at times I was emotionally exhausted and overwhelmed with a sense of helplessness. A photograph is a bridge that brings the viewer and subject to occupy the visceral space and moment, evoking empathy. The most important function of my photographs and writings is to record hardships, struggles, and triumphs of individuals who represent the generations of indigenous Papuans facing the epidemic head-on. Ultimately, I hope the photographs will ignite the necessary spark for dialogue, and help bring about the changes that are necessary. Andri Tambunan Jakarta, May 2013
Ac k now l e dge m e n ts
This project was made possible from the generous financial support of the Angkor Photo Festival, Reminders Project Asian Photographers Grant, and Pictures of the Year International (POYi) Emerging Vision Incentive. I couldn’t have done this project without the help of many nurses, doctors, activists, researchers, community leaders, teachers, field workers, and volunteers in Papua: Mother’s Hope Foundation (YHI), Jayapura Support Group (JSG), Family Health International Jayapura, YPKM Wamena, YUKEMDI, Clinton Health Access Initiative Wamena, Klinik Kalvary, Caring Hand (Tali), Yayasan Santo Augustinus, Sorong Sehati, and especially my friends who had opened up their lives to me and allowed me to document their struggles and triumphs. Special Thanks to Dr. Leslie Butt, Jason Lorico, Emily Berl, Francoise Callier, Camille Plante, Jessica Lim, Mark Morris, Mike Davis, Rick Shaw, Yumi Goto, James Estrin, Samuel He, Desmond Lim, Juliana Tan, Angel Lopez, Big Bang & Fuzz, Emphas.is, The Invisible Photographer Asia, and my family and friends in Indonesia and America for all of their support. Additional funding also came from a handful of generous individuals: Juan Posada, Tom McKissick, Le Nguyen, Sabrina Wong, Travicia Jordan, Andrew Cullen, Alicia Vera, Mario Ignacio, Theodore Kaye, Dhruv Dhawan, Yuki Kokubo, Mariella Furrer, Matt Chong, Kat Lorico, Gavin Okamoto, Jacob Kushner, Mildred Odongo, Lyn Nguyen, Carlos Zamarripa, Desmond Lim, and Kevin Wylee. Major backers include Dorian Iten, Christine Pielenz, and Mylan Truong.
ANDRI TAMBUNAN