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Love as harm reduction: fighting AIDS and stigma in Vietnam Small, Dan Dec 3, 2009

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ralssBioMed CentHarm Reduction JournalOpen AcceCase studyLove as harm reduction: fighting AIDS and stigma in VietnamDan Small1,2Address: 1Department of Anthropology, University of British Columbia, Vancouver, Canada and 2Director, PHS Community Services Society, Vancouver, CanadaEmail: Dan Small - dansmall@interchange.ubc.caAbstractIn the summer of 2009, I visited a humble orphanage for children with HIV/AIDS in Vietnam. Here,like many parts in the world, the very existence of marginalized people with stigmatized illness ishidden away. Relegated to the shadows of society, these children lacked something morefundamental than housing, shelter, nutrition and medications. They lacked families to love and carefor them unconditionally. One might think it self-evident that a visit to an orphanage for childrenwith HIV would be profound, but the profundity wasn't where I expected to find it. It was in howthe children had created their own family, loving each other like brothers and sisters, and the waythe priest who operated the shelters was more than a Father, he was a dad to dozens of children.This is an account of love as harm reduction in the Mai Tam orphanage in Ho Chi Minh City.For Bé HinThe Mai Tam orphanage and two other shelters in Ho ChiMinh City are operated under the direction of a Catholicpriest, Father Toai Dinh Toai in the Archdiocese of Ho ChiMinh City. The first is home to 50 children and 14 moth-ers with HIV and AIDS. It is known as the Mai Tam shelter.The second provides shelter for 26 children and 12 moth-ers living with HIV. The third is a hospice where there arecurrently 16 children in the doorway of death. The priestwho operates the shelter is a young man with gentlenessin his eyes and a welcoming smile. When I walked withhim from room to room, the children reached to touchhim like they might a loving mother or father. As a fathermyself, the love between the children and their collectivedad was unmistakable.Ensuring that the children have shelter is no small task.The program is controversial in Vietnam and there is tre-mendous difficulty finding a permanent place where chil-being served eviction by the owner of the home. Despitevisits from the police at the request of the landlord, Fr.Toai was holding out until there was a new home for theorphans. Fortunately, a parishioner had donated half ofher yard for a shelter and the money had been raised tobuild a permanent home.Beyond being a priest, Fr. Toai has undergone training tobecome a physician's assistant. This allows him to gobeyond overseeing the children's shelter and psychosocialneeds to managing their health care (including anti-retro-viral treatment). Each day, he begins at 6:30 am as he vis-its the shelters one after another. His day ends at 10:00each evening after visiting the children's hospice. He hasthe help of nuns who provide schooling and nurses thatvisit during the week. Mothers with HIV living in the shel-ter also help with the care of the children.Whenever possible, Fr. Toai attempts to reconnect thePublished: 3 December 2009Harm Reduction Journal 2009, 6:34 doi:10.1186/1477-7517-6-34Received: 23 September 2009Accepted: 3 December 2009This article is available from: http://www.harmreductionjournal.com/content/6/1/34© 2009 Small; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Page 1 of 5(page number not for citation purposes)dren with HIV are welcome. When I visited, the priest andthe children were illegally "squatting" in a home afterchildren with any surviving family members. This isextremely difficult and requires educational tenacity as heHarm Reduction Journal 2009, 6:34 http://www.harmreductionjournal.com/content/6/1/34works to overcome stigma, fear and lack of knowledgeabout HIV. He also tries to reintegrate them into main-stream society. This is an enormous challenge given thatchildren with HIV are not even welcome in schools in HoChi Minh City. As the school year began in 2009, parentsof unaffected children forced officials, who willingly com-plied, to expel all children living with HIV. The newspa-pers carried photographs of children with HIV, with tearsstreaming down their cheeks, ashamedly exiting theschools on the first day of class[1,2].The priest told me that one of the girls he was trying tointegrate into a mainstream school asked him a penetrat-ing question one day: "how come you teach me not to lie,but you tell me to lie at school?" He had instructed her toavoid telling other children that she has HIV when she hasto take her antiretroviral medications (ARVs). Instead, hehad suggested that she say that she has a heart problem.Clearly, the priest understood that the children do not livein the black and white world of the Ten Commandments.My impression upon seeing dozens of children in thecrowded shelter was a mixture of sadness and rage. Mysadness had the same roots as my ire at how we had failedthese children. We had failed to put in place the necessaryhealthcare and social conditions to protect them fromcontracting HIV. Here these children were, and still are,sequestered from streets of Ho Chi Minh City where theirpain might otherwise be publicly acknowledged. Theyhad arrived at the orphanage with the death of their par-ents or they had been abandoned, deserted and left at thedoorstep. Without this modest shelter, they would lack ofthe basic sustenance necessary to give them the slightestchance at health. But there was something deeply inspir-ing about this shelter from the cold world.Life at Mai TamAt the shelter, the children appeared, for the most part, tobe happy. They were drawn to the young priest as thoughhe were their paternal father. I watched as a little one,withered with his illness and as of yet unresponsive totreatment, 7 years old and no more than 30 pounds,weakly reached up from the floor where he sat to touchthe Father's hand. The father attentively caressed his littlewrist and held onto his little arm with love (see Figure 1).He introduced each child and told his or her story. Theyoung ones signaled their desire to be picked up and heldby him by lifting their little arms in the air as he drew near.When he first began speaking, one little boy of about 11months of age crawled over to the father and tugged at hisleg. The Father bent down and picked him up and heldhim like his own son. One of the young mothers with HIVwho live and help in the orphanage reached to hold thefor the priest when the young mother took him. Itreminded me of my own son at home in Canada, thesame age, desperately reaching for me whenever I walkinto the room.The youngest children were in a playroom at naptimewhen I arrived. They slept on the floor in a room whiletwo young women from the shelter watched over them.There is only one bathroom, with a single shower hoseand a bucket, which is used to bath the children. Theyhave donated formula, anti-retroviral HIV medicationand some toys. Each child has their own face cloth withtheir name written on it hanging on a drying rack in theroom. The environment, though sparse, appeared to beinfused with love, caring and kindness. This love seemed,to me, to be the core ingredient in the healthcare andhousing of these children. Without it, I'm convinced; theywouldn't stand a chance to be on the threshold of a suc-cessful life.The youngest child was a small baby of only a few monthswho was unable to hold her own bottle. She was aban-doned in the hospital and was too little to hold her ownbottle so one was propped in her mouth. As I looked ather in her small crib, she looked at my face and followedme with her eyes. As one of the young boys began to cry,Fr. Toai walked over to him and asked why he was sad.The little boy told him that another boy had taken his toy.The priest went over to the other child and softly asked forthe toy to be given back. The little boy handed the toy toThe EmbraceFigure 1The Embrace. A photograph of a loving embrace between a father and son.Page 2 of 5(page number not for citation purposes)baby so that the priest could continue his tour. The littleboy clung and protested with big wet tears and cried outthe father and he returned it. The sad boy immediatelystopped crying. His "dad" had set the situation right.Harm Reduction Journal 2009, 6:34 http://www.harmreductionjournal.com/content/6/1/34Children teaching kindnessOne of the things that was most profound to me was thefact that the children had so much to teach about kind-ness. It was a kindness that had not been given to themfrom the wider world from where they had been expelled.As a case in point, a young girl, of about 6 years of age, car-ried the children around the room, took them from thepriest to help him. She would then sit down with them onher lap and stroke their hair and kiss them. One little boy,about 13 months old, provided a lesson in sharing. Hewas sitting holding his infant bottle and trying to feedanother child of the same age. The other child did notwant to eat but the little caregiver was persistent. Finally,the little boy took some of the milk: one little baby feed-ing another. The recipient of the bottle eventually pushedthe bottle out of his mouth. The caregiver persistentlyattempted to feed his little friend again, about 3-dozentries, each time saying "Uh Uh, pause, Uh Uh, pause, UhUh". The little recipient began to cry and the nurturerstroked his head and consoled him in Vietnamese. Here,were two infants, not yet walking, sharing their scarcefood and taking care of each other. When I commented onthis, the priest said that the young children had not yetbeen exposed to the wider world and, as such, have notmet people who are so concerned about meeting theirown needs. Like brothers and sisters, they had created thelove and family none of them had outside the orphanage.But, despite the lesson they taught about kindness andacceptance, they still have to share the finite amount ofparental love available through the father, the nuns and illmothers. They appeared to me to crave human contactand more than once I felt one of the children brushagainst my leg and tug on my pant leg to be picked up.When I photographed them, they ran to me to see the dig-ital image. One child, the priest sadly showed us, is iso-lated because he has tuberculosis. He has to spend all hisdays and nights, alone, in a single room behind glass win-dows. I wished that prospective parents would open theirhearts a little wider and adopt children with HIV. But, asa rule, they don't.One of the young children, a boy of about 2 years of age,it turned out, in the fullness of time, was not HIV positive.The priest reported that a Canadian couple attempted toadopt him but have given up after the process appearedtoo difficult. I asked the Priest if adoption would be ulti-mately completed: he stated "No, not this time". The littleboy slept, without a pillow, on his side on the floor. Ear-lier a five-year-old girl had held him on her lap and pickedhim up so that his head was on her shoulder. He proved alittle too heavy, while sleeping, and, as a result, his headwould roll back and his light hair would hang down-A powerful history of stigmaThe stigma against HIV in Vietnam is powerful. The ownerof the home where the majority of orphans lived when Ivisited wanted the house back. The owner had evictedthem despite the fact that they did not have another homewhere they could live. The Priest has had to raise$200,000 US to obtain a new home: $100,000 for landand another $100,000 for the building. No one wouldrent them a home because of the stigma of AIDS. Follow-ing an update in his homily to his congregation regardingthe status of the orphanage, a parishioner, donated half ofher lot, with her house still beside it, for the orphanage. Asa result of this kindness, the Priest had half of the$200,000 for the new home. Through donations over theyears, he was getting closer to the mark. In 2009, hetraveled to the U.S. for two weeks to try "raise money".When I asked how he raised money (imagining proposals,pamphlets and PowerPoint presentations) he responded:"I begged in front of churches, like a beggar". He raised$35,000 US asking for help in front of Catholic Churchesin Boston.When I saw all the caring that centred on the work of thisone priest, I began to worry about what might happen ifhe left or became weary. Already knowing the answer, Iasked him directly whether there was a succession plan.He told me the answer I expected: there is no one toreplace him. I asked how he looked after himself and hesaid: "that's a very good question". He then told me thathe learns so much from the children about kindness andthat the children provide him with nourishment that giveshim strength.In the 19th century, people living with leprosy in theHawaiian Islands were banished to Kalaupapa, an isolatedsettlement at the top of a steep cliff, in an isolated regionin Molokai. At that time, the government offered a bountyfor people who turned in lepers and, once discovered,they were sequestered from the wider society because offear of their condition. Given that relocation was perma-nent, family members without leprosy often accompaniedtheir loved ones and lived at the leper colony. Over its his-tory, thousands people were exiled there and the popula-tion of lepers ranged from several hundred at any time toits most populous of 1,213 in 1890. Approximately 8000are buried there today[3].Joseph De Veuster travelled to the Hawaiian islands in1863 where he was to spend the next 16 years, the remain-der of his life, as priest, baker, farmer, physician and car-penter to those stricken with leprosy[4]. He was 33 yearsold at the time, and after he adopted the name FatherDamien upon his ordination in 1864, he volunteered toPage 3 of 5(page number not for citation purposes)wards. permanently live amongst the lepers. He, himself, con-tracted leprosy and died of complications related to theHarm Reduction Journal 2009, 6:34 http://www.harmreductionjournal.com/content/6/1/34disease on 15 April 1889[3]. He was beatified on 4 June1995[5]. Today, his memory is also evoked in reference tothose people living with AIDS who, like lepers, are fearedand stigmatized.Fr. Toai reminded me of the legend of Fr. Damien caringfor the lepers of Molokai. Many healthcare issues, like lep-rosy or AIDS, exist at a busy intersection of cultural values.In Canada, people with leprosy were quarantined onD'Arcy Island and Bentinck Island in British Columbiabetween 1894 and 1924 where they were given only thebarest of necessities: food and coffins[6]. The afflictedwere exiled and left to die on these islands without health-care despite the fact that leprosy was not acutely conta-gious. There was also an element of ethnocentrism in thatonly lepers of Chinese origin received this fate whereasEuro-Canadian lepers, in contrast, enjoyed healthcareservices from the nuns of the Hospitalières de Saint-Joseph based in New Brunswick and Quebec [7-9].Similar to people who are dependent on illicit drugs andthose with HIV today, the lepers were often blamed fortheir disease. They were believed to have brought their dis-ease upon themselves because of morally wrong behav-iour. Of course, children with HIV, like persons withleprosy, did not bring this disease upon themselves andtheir suffering was not self-induced. Fr. Toai is ministeringin an isolated community with people who have beenexpelled and who are considered "not quite" human. LikeFr. Damien, out of necessity, he is creating a parallelworld, constructed out of love, with shelter, nutrition,healthcare, education and acceptance.What's more, the places where more resources exist arenot easily available to these children by reason of thestigma associated with their condition. And so, they arealso sequestered to their home country. They cannot beeasily adopted and brought to places with more univer-sally available resources like my home country Canada byreason of their illness. They are, by sad default, treated asthough they are not economically viable, only partiallyhuman and therefore unworthy of immigration. Such anapplication for adoption and immigration would likely berejected out of hand to protect the taxpayer and publicpurse from the cost of treating their illness. We will all bebroken by serious illness eventually; everyone's body willone day cease to operate. Despite the barriers of stigma,these children may live for decades with sufficient nutri-tion, shelter, anti-retroviral medications and love. But,regardless, they are considered social lepers.Love and kindness: the common thread of caring for othersrals provided by USAID. Above the cabinet there were lit-tle urns holding the ashes of the children who had died.Beside each urn was the favorite toy of each child who hadsuccumbed to AIDS: a teddy bear, a toy car. They were likelittle shrines to the young lives of the children who hadlived with their brothers and sisters in their orphan family(see Figure 2).Many of the orphaned children had parents who con-tracted HIV through injection drug use. If peeled down totheir very core, all approaches to drug dependence: treat-ment, prevention, harm reduction, treatment and enforce-ment approaches to drug dependence share a commonhumanistic element. The healthcare practitioner's com-mitment to treating the hardest to treat patient, with tra-ditional treatment or harm reduction, is based on love forthe patient's humanity and hope for their well-being.Attempts at prevention are based on the devotion of pro-fessionals and the eagerness of communities, out of love,to prevent people from drug dependence and its risk. Inmany cases, the police officer's attempt to stop the importand distribution of drugs may be founded in a devotionto the people and communities that they serve and pro-tect.The fact that children of the shelter have been failed somiserably by public policies that could have preventedHIV/AIDS continues to haunt me. Many of the parents ofthese children were injection drug users and survival sextrade workers whose HIV/AIDS could have been pre-vented with proper access to clean syringes, pharmaceuti-cally assisted therapies, shelter, education, nutrition andUrns and ARVsFigure 2Urns and ARVs. A photograph showing antiretroviral med-ications (ARVs) in a cabinet at the orphanage. The urns of orphaned children lost to AIDS, along with a favourite toy, Page 4 of 5(page number not for citation purposes)At the entrance to the orphanage, there was a cabinet withmedications for the children: antibiotics and anti-retrovi-rest on the top of the cabinet.Publish with BioMed Central   and  every scientist can read your work free of charge"BioMed Central will be the most significant development for disseminating the results of biomedical research in our lifetime."Sir Paul Nurse, Cancer Research UKYour research papers will be:available free of charge to the entire biomedical communitypeer reviewed and published immediately upon acceptancecited in PubMed and archived on PubMed Central Harm Reduction Journal 2009, 6:34 http://www.harmreductionjournal.com/content/6/1/34healthcare. It seems shameful that prevention, treatment,harm reduction and enforcement systems have failed toadequately protect families and children like those livingin Mai Tai shelter from contracting HIV. Victims of stigmaand failed public policies, these children are now unwel-come in the wider world: forced to seek shelter outside themainstream community. In the face of the detached littleworld of the orphans, I was reminded that there isn'treally a world, system or society that could adequatelyshoulder the blame. Worlds, systems and societies aren'tself-determining. They are comprised of the same inten-tional building blocks: you and I.The roots of harm reduction and population health are inits attempt at curbing the deleterious effects of HIV, HCVand fatal overdoses. These roots can also be traced to adevotion to people and communities. This theme, kind-ness and love, comes to life in the orphan community, asthe children and their father care for one another, at theMai Tai shelter. Perhaps, love, itself, is harm reduction.Competing interestsThe author declares that they have no competing interests.AcknowledgementsNo funding was obtained in association with the writing of this paper.References1. HIV-Positive Vietnamese Students Shunned From School[http://www.poz.com/articles/vietnam_students_hiv_stigma_1_17142.shtml]2. Overland MA: HIV-Positive Kids Shunned From School.  InTime Time, Inc; 2009. 3. Bowman SJ: Remembering the Time of Separation.  NationalParks 1995, 69:1-5.4. Donohue JW: Of Many Things.  America 1994, 170:1-2.5. Moblo P: Blessed Damien of Moloka'i: The Critical Analysis ofContemporary Myth.  Ethnohistory 1997, 44:691-726.6. Across the Generations: A History of Chinese in Canada[http://collections.ic.gc.ca/generations/index2.html]7. Hamilton J: Race, Contagion, and Discrimination: EndemicLeprosy in 19th Century New Brunswick.  UWOMJ 2005,78:75-78.8. The History of Leprosy in Canada: British Columbia: D'ArcyIsland   [http://www.leprosy.ca/Page.aspx?pid=251]9. BC Parks - D'Arcy Island, Haro Strait   [http://www.britishcolumbia.com/parks/?id=425]yours — you keep the copyrightSubmit your manuscript here:http://www.biomedcentral.com/info/publishing_adv.aspBioMedcentralPage 5 of 5(page number not for citation purposes)

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