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Arielle Scoblionko Final Thesis


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Parsons BBA in Design + Management Senior Thesis Presentation Spring 2009. Student: Arielle Scoblionko, Faculty: Robert Rabinovitz, Associate Professor, School of Design Strategies, Parsons The New …

Parsons BBA in Design + Management Senior Thesis Presentation Spring 2009. Student: Arielle Scoblionko, Faculty: Robert Rabinovitz, Associate Professor, School of Design Strategies, Parsons The New School for Design

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  • 1. HAU aids in ethiopia: born without rights a two step communication system arielle scoblionko
  • 2. introduction navigation project introduction; spring 2008 design development; course overview 6 project topic exploration; brainstorm 8 project brainstorm; brainstorm inspiration 10 hiv/aids prevalence; demographics 12 hiv/aids prevalence; africa 14 hiv/aids prevalence; ethiopia 16 problem overview; understanding hiv/aids 18 project introduction; 2008-2009 school year senior thesis; course overview, 20 design development (spring 2008) review; inspiration 22 project topic exploration; childhood 24 project research; inspiration 26 introduction; problem statement 28 identifying the problem the epidemic; hiv/aids 30 hiv/aids; scientific overview 32 scientific overview; hiv/aids victims 34 hiv/aids victims; children 36 child hiv/aids victims; physical and mental effects 38 child hiv/aids victims; psychological and social effects 40 child hiv/aids victims; economic and political effects 42 child hiv/aids victims; global mortality effects 44 effects on children; mother to child transmission 46 mother to child transmission; breast feeding 48
  • 3. aids in ethiopia: born without rights understanding the problem understanding the larger context; social environment and development 50 understanding the larger context; socialization 52 understanding the larger context; childhood 54 understanding the larger context; childhood in africa 56 understanding the larger context; motherhood 58 understanding the larger context; motherhood in africa 60 understanding the larger context; breast feeding 62 understanding the larger context; breast feeding in Africa 64 breast feeding; prevalence 66 breast feeding prevalence; femininity 68 breast feeding and femininity; motherhood 70 breast feeding and motherhood; cultural significance 72 breast feeding and motherhood; common practices 74 breast feeding practices; health 76 breast feeding health; hiv/aids relationship 78 child hiv/aids; in africa 80 child hiv/aids: in ethiopia 82 understanding the community ethiopia; country overview 84 ethiopia, cultural overview 86 ethiopian culture; family planning 88 ethiopian cultural roles; men 90 ethiopian cultural roles; women 92 ethiopian cultural; children 94 meet the people; personas 96
  • 4. introduction navigation current solutions overview; hiv/aids, global 98 critique; hiv/aids drug treatment and scientific advancements 100 critique; hiv/aids outreach, and organizations 102 critique; hiv/aids shelter 104 critique; hiv/aids, volunteer services 106 critique; hiv/aids, breast feeding alternatives 108 critique; hiv/aids, abstinence 110 expanded research research opportunities; global needs 112 inspiration; human rights 114 inspiration; the big pictures 116 diseases; malaria 118 diseases; diarrhoeal 120 diseases; chytridiomyosis 122 diseases; simian immunodeficiency virus,feline immunodeficiency virus 124 prototyping opportunities; areas of intervention 126 selected area of focus ; prevention 128 inspiration; all of us the movie 130 inspiration; dr. mehret mandefro, ethiopian-american hiv/aids specialist 132 initial brainstorm; process 134 expert feedback; dr. mehret mendefro 136 solution; draft 1 138 expert feedback; dr. mehret mendefro and HIV-positive patients 140 solution; draft 2 142 solution; draft 3 144 solution; draft 4 146 expert feedback; dr. mehret mendefro 148
  • 5. aids in ethiopia: born without rights intervention overview; problem 150 overview; context 152 supporting research; gift 154 supporting research; game 156 supporting research; adornment 158 supporting research; methods of change 160 supporting research; educational and verbal impact 162 overview; hau 164 hau; elements 166 hau; description, modified deck of cards 168 hau; description, pendant 170 hau; the system 172 hau; the complete s ystem, distribution 174 hau; future opportunities 176 project resources bibliography 178 images 180
  • 6. project introduction; spring 2008 design development: course overview T here are many broadly applicable principles that can be used to enhance the design development process in any context. Design Development is a one semester course that addresses these fundamental principles in a conceptual as well as practical manner. The course encourages studying the ways in which design processes unfold from many perspectives which affords opportunities for developing the insight required to recognize critical junctures that offer opportunities for increasing creativity and efficiency. 1. 6
  • 7. aids in ethiopia; born without rights Design Development(spring 2008): Identifying the Problem image inspired by “2.”
  • 8. project introduction; spring 2008 project topic exploration; brainstorm 8
  • 9. aids in ethiopia: born without rights
  • 10. project introduction; spring 2008 project brainstrom; brainstorm inspiration 10
  • 11. aids in ethiopia: born without rights
  • 12. project introduction; spring 2008 hiv/aids prevalence; demographics A Global View of HIV infection; 30-36 million living with HIV, 2007 ADULT PREVALENCE (%) 15.0% - 28.0% 5.0% -< 15.0% 1.0% -< 5.0% .5% - < 1.0% .1%-,< 5% <.1% No data available UNAIDS global report on the HIV epidemic, 2008 12
  • 13. aids in ethiopia: born without rights 4. Cameroon Project, AIDS orphan 6. AIDS orphan; South Africa Young girls effected by HIV/AIDS. 3. Stanley, HIV positive and malnourished; Upendo Village, Kenya 14. 7. Mekdes is being dropped off by her aunts at an AIDS orphanage in Addis Ababa, Ethiopia
  • 14. project overview hiv/aids prevalence; africa A Global View of HIV infection; 30-36 million living with HIV, 2007 ADULT PREVALENCE (%) 15.0% - 28.0% 5.0% -< 15.0% 1.0% -< 5.0% .5% - < 1.0% .1%-,< 5% <.1% No data available Africa,2007 UNAIDS global report on the HIV epidemic, 2008 14
  • 15. aids in ethiopia: born without rights South Africa’s Department of Health estimates that 18.3% of all African adults (15–49 years) were living with HIV in 2006 (60:3). 8. Villagers in Masogo, Kenya attend a funeral for a suspected AIDS victim.
  • 16. product introduction; spring 2008 hiv/aids prevalence; ethiopia A Global View of HIV infection; 30-36 million living with HIV, 2007 ADULT PREVALENCE (%) 15.0% - 28.0% 5.0% -< 15.0% 1.0% -< 5.0% .5% - < 1.0% .1%-,< 5% <.1% No data available Ethiopia,2007 UNAIDS global report on the HIV epidemic, 2008 16
  • 17. aids in ethiopia: born without rights Of Ethiopia’s 77 million people, 3 million are HIV-positive, each day birthing 1,000 new infections (61) . 43. Francois, 4 months old here, and weighing 3 kg (6 lbs 9oz). He was born in an isolated village in west senegal, weighing very little, but otherwise healthy. Some volunteers stumbled upon his village, “at that point he was quite near death and weighed only 1.4 kg (3 lbs 1 oz). they worked tirelessly one on one with this baby’s mom for 3 weeks to reestablish breastfeeding and offer supplemental high-calorie feedings. On the day this photo was taken, [the photographer] trav- eled with [a] friend who had worked closely with [the] family...[he was] still very tiny for his age, but the most he had ever weighed in his life. [They} learned he had also recently gotten over malaria, which by all laws of medicine and common sense should have been the end of him. he was quite anemic, but nonetheless thriving.”
  • 18. project introduction; spring 2008 problem overview; understanding hiv/aids HIV:and like all viruses replicates insideVirus) is a retrovirus, HIV (Human Immonodeficiency host cells. A retrovirus is a genetic material composed of ribonucleic acid (RNA), and uses an enzyme, reverse transcriptase, to convert RNA to DNA. HIV reproduces by invading other cells. Upon cell invasion the virus produces more infectious particles by converting viral RNA into DNA and then making many RNA copies. The switch from RNA to DNA and back to RNA makes combating HIV difficult because each switch offers opportunities for error and viral mutation (mutation means that the virus can outwit human response). Once viral copies are made they break out of the cell, destroying it and infecting other cells (62: 22-23). 10. Healthy white blood cells 11. HIV virus infecting cell; image by Jeff Johnson 18
  • 19. aids in ethiopia; born without rights AIDS: T cells whichthe immunethe body’s overall primarily CD4 HIV attacks organize system, immune system. After infecting a CD4 T cell (by penetrating the cell’s wall) the virus becomes part of 12. White blood cell infected with AIDS the immune system, disabling full expulsion of the virus. The body attempts to produce more CD4 cells but once their number declines to a certain level the immune system shuts down. These later stages of HIV are referred to as AIDS (Acquired Immune Deficiency Syndrome) (62: 22-23). 23. AIDS viruses budding from a white blood cell's membrane: Image by Matthew Christopher 13. AIDS positive cell
  • 20. project introduction; 2008-2009 school year senior thesis: course overview S enior Thesis is a two semester course intended to draw upon and test competencies developed in previous courses. By employing and refining skills of research, analysis, explanation, persuasion, and presentation this project demonstrates an intimate understanding in the emerging field of Design Research. AIDS In Ethiopia; Born without Rights represents four years of study, channeling unique talents to understand, communicate, research and design for unfamiliar people in unfamiliar places. Photograph by Harold Davis 20
  • 21. aids in ethiopia: born without rights Senior Thesis (2008-2009): Intervention/Innovation image inspired by (2).
  • 22. project introduction; 2008-2009 school year design development (spring 2008) review; inspiration Sudan - almost 500,000 children refugees caused by violence and civil war 5. These children are born without rights.They Ghana - 3% of the population endure the from 15-49 are currently infected with the AIDS virus 5. consequences Ethiopia - this country of of their parents’ Uganda - more than 940,000 children are orphaned due to 70 million has more than 5 million orphans, their actions. the AIDS pandemic 5. parents lost to famine, disease, war and AIDS 5. Zambia - 47% of the population is younger than 15 with only 7% receiving aid of any kind 5. 5. 22
  • 23. aids in ethiopia: ethiopia; born without rights The rapid spread In many ways, scientific research has delineated of HIV is a global the means by which mother to child epidemic. transmission In developing can be prevented. The countries, up to primary challenge now 50% of infant facing the HIV community is how to implement, in contraction is arange of settings, due to breast the benefits of these feeding (63: 1). discoveries. 18. 16. AIDS orphan, Uganda
  • 24. project introduction; 2008-2009 school year project topic exploration; childhood “In biology, survival is the ultimate criterion of adaptation, achieved not only through spawning and protection of the newborn but also indirectly through the social processes involved in the provision of food, sharing of information, and maintenance of social order - in all animals. A[n understanding] of child[hood] care in any human population must begin with how adaptive functions are socially and culturally organized in the local environment of the child” . (44:12-13) 24 21.
  • 25. aids in ethiopia: born without rights Perceptions of childhood vary amongst cultures, demographic regions, time periods, religions, and races. Despite childhood differences, all 17. 44. people are connected by the common inability to bypass the early biological stage of life, childhood. Therefore, all children are entitled to the basic human rights that ensure a healthy physical, mental and spiritual development. However, many children are denied these fundamental human rights due to social, cultural and environmental constraints. As a global society bound by our biological commonalities, it is our responsibility to protect future generations and ensure the continuation of human existence. 45. 18. Photographer: E. Obi-Akpere; Buhona, Ethiopia
  • 26. project introduction; 2008-2009 school year project research; inspiration 22. “ Newsweek magazine announced, in its 1997 special issue on children, that breast feeding may boost a child’sintelligence. But the New York Times warned of the dangers of HIV infected mothers passing the virus to their infants through their milk (Meier 1997). And Time magazine told the story of a female Army pilot, Emma Cuevas, who asked to be released from the service to breast feed her baby after her six-week maternity leave was up. She was denied this option, though experts on her behalf claimed a constitutional right to breast feed” . (64: 1) 26
  • 27. aids in ethiopia: born without rights 22.
  • 28. project introduction; 2008-2009 school year introduction; problem statement C urrently fourteen percent of children in Ethiopia are stripped of their human rights due to HIV/AIDS exposure, 33 – 50% of which contract the fatal virus through their mother’s breast milk. Ethiopia faces unique HIV transmission challenges due to the societal significance of breast feeding, which secures a woman’s role and rights within a community. Globally we have battled the HIV/AIDS epidemic through governmental interventions, volunteer services, antiretroviral treatments, education, sexual protection, and scientific and medical advances, all of which are compatible within the first world countries in which they were created. In order to restore human rights to children, there is a desperate need to implement, in a range of settings, the benefits of these discoveries. 24. Blumenfeld, David: Ethiopia, Tshay Tefera, 2 yrs 28
  • 29. aids in ethiopia: born without rights 26. Johannesburg, South Africa. Child Living with HIV/AIDS at Nkosi’s Haven 27. Otwandani Orphanage: Soweto, South Africa. Ishmael 2 yr old AIDS orphan reaches up to be held. 25. Bati, Ethiopia: Relief Centre. Child awakened to make sure she is alive.
  • 30. identifying the problem the epidemic; hiv/aids “In Ethiopia 1,000,000 children under the age of 14 have lost at least 1 parent to AIDS.That makes Ethiopia the country with the most HIV positive 32. children” . (22) 30
  • 31. aids in ethiopia: born without rights 33. African child 31. HIV positive children, Africa
  • 32. identifying the problem hiv/aids; scientific overview TRANSMISSION ROUTES MYTHS HIV requires a host cell to HIV is found in body fluids 1. Once a person becomes stay alive and replicate. To and cannot live long outside infected with HIV he will die replicate, the virus creates the body. In order to new virus particles inside a transmit HIV, body fluid 2. HIV can be cured host cell and those particles must be passed from an HIV carry the virus to new cells. positive person to an HIV 3. HIV positive people Once infected, the T-helper negative person. engageing in sexual activity, cell turns into a HIV do not need a condom replicating cell. T-helper cells primary transmission routes: play a vital role in the body’s 4. HIV only affects gay men immune response. There are 1. Sexual contact (anal, and drug users typically 1,000 T-cells per vaginal, or oral) one millmeter of blood. HIV 5. People over 50 can’t get will slowly reduce this 2. Sharing needles/syringes HIV number until a person’s count drops below 200. 3. Mother to child: labor, 6. HIV is the same as AIDS When this happens, a person delivery or breast feeding. has progressed from HIV to 7. Once infected with HIV, a AIDS. 4. Blood transfusions women can’t have children 35. Healthy Red Blood Cells 32
  • 33. 1 HIV homes in on the aids in ethiopia: CD4+ T cell born without rights 2 HIV RNA chain 6 New envelope is converts to DNA assembled with HIV virus 1 inserted 6 2 Outer 2 envelope is removed 3 HIV RNA chain converts to DNA 5 DNA 3 commands 5 Diagram of HIV attacking 4 chromosomes inside nucleus 4 HIV DNA to make more CD4+ T cell and reproducing penetrates cell nucleus cell nucleus HIV CD4+ T Cell 7 HIV bursting 7 from the cell 36.
  • 34. identifying the problem scientific overview; hiv/aids victims In 2007,68% of “Every day, over 6,800 persons all new HIV become infected HIV and over 76% infections and with 5,700 persons die of all deaths from AIDS” . (66: 10) due to AIDS occured in sub-Saharan Africa . (66: 12) 15. This child was born ten weeks premature and is HIV positive. 19. An HIV positive orphan, Nairobi, Kenya. 46. An HIV-infected man lies on a hospital bed in Jakarta, 30 November 2007. 34
  • 35. aids in ethiopia: born without rights In sub-Saharan Africa , the estimated number of children (under 18) orphaned by AIDS more than doubled between 2000 and 2007. UNICEF estimates that by 48. HIV-positive children 2010 there will be 18.4 The WHO estimates that in 2015 AIDS million children will cause one in six deaths in sub-Saharan Africa in Africa (62: 21) . 47. Cambodian HIV positive woman Mut Dem San, 29, lies on the floor of the health center orphaned by AIDS . (62: 66)
  • 36. identifying the problem hiv/aids victims; children “From the beginning of the HIV pandemic through 2002, four million children under 15 years of age worldwide became infected” (64: 3). 37. Ethiopian boy In 2007, globally, 2.5 million children The World Health Organization estimates that (under the age of 15) were living with 500,000 children under the age of 15 died HIV/AIDS. (66: 7) 38. Children at an Outpatient Treatment Center; Lerra village, southern Ethiopia. Photo: AFP/GETTY from AIDS or related causes in 2003 alone. 36
  • 37. aids in ethiopia: born without rights Most children Ethiopian children ages are infected with the virus 5 to 14 are called ”windows of hope” because the duringpregnancy, future is in their hands (67:16) . delivery or while breast feeding. About 50% of infants who get HIV from their mothers die before their second birthday. 39. Women wait to get treatment for their malnourished children at an Outpatient Treatment Center 37. A mother holds the hand of her malnourished boy at a Red Cross Red Crescent centre in the Wolayita region in the South of Ethiopia.
  • 38. identifying the problem child hiv/aids victims; physical and mental effects failure to thrive* fever * fatigue * rash * prone to infection * respriraatory manifestions * haematological manifestations pheumocystis carinii pneumonia * viral infection * lymphoid pulmonary lesion * delayed mental development * sore throat A malnourished boy is portrayed at a feeding 25. centre in Damota Pulassa, southern Ethiopia. 38
  • 39. aids in ethiopia: born without rights psychological effects * central nervous system manifestation * headache * gastrointestinal symptoms The first symptoms of HIV infection can resemble symptoms of common cold or flu viruses * swollen lymph nodes * social alienation Eleanor Bentall/Tearfund, 13-month-old Abusch 91. A malnourished HIV+ child with tuberculosis. 23. Demisse Mada is one of tens of thousands of severely malnourished children in Ethiopia. Picture: Eleanor Bentall/Tearfund.
  • 40. identifying the problem child hiv/aids victims; psychological and social effects The impact of HIV/AIDS on children is seen most dramatically in the rising numbers of children and adolescents orphaned by AIDS. UNICEF estimates that over 15 million children, 12.3% of all children in sub-Saharan Africa, have been orphaned by AIDS, and the number is rising. Orphans who grow up “unloved, uncared for, and unsocialized [are] thought more likely to become criminals.” The growing number of orphans presents a pressing public issue regarding child care because the dependency rates increase, placing demands on the government and society to provide education, health care, and social support (62: 90). African Orphans. 40
  • 41. aids in ethiopia: born without rights As young adults (ages 15-25) fall ill Africa The burden of family is at risk of loosing an entire care increasingly generation. “The loss of falls on the maternal older people means skills and knowledge grandmother are not passed on - ‘institutionlal as the pandemic grows. memory’ is lost” (62: 83) . Child & Grandmother. Property of VOA news. “The burning question is what happens when today’s grandmothers die; AIDS means the next generation of grandmothers Fatuma Hillow and her grandmother Batula Guha Property of Nkoni Cameroon Women Group. Grandmother on Kanazi Island. Property of Helmi Maria, travel writer. will be absent” . (62: 83) Chronicle photo by Michael Macor
  • 42. identifying the problem child hiv/aids victims; economic and political effects HIV/AIDS greatly decreases worker productivity which affects agricultural development and related labor, consequentially leading to famine. Malnutrition, resulting from famine, increases risk of transmission and intensifies active viruses. “Day in the Life of Africa.” Photograph by Pictopia. 42
  • 43. aids in ethiopia: born without rights The increasing dependency “It is in the interest of on government aid the nation state, for “adversely affects economic growth by depressing healthy mothers the national savings rate and to supply the next reducing future generation of domestic resources workers and citizens” (64: 2). available for investment” (62: 64). 42. Magwa Tea Field Workers, South Africa. “... disease creates poverty and despair and erodes institutional capacity...” (62: 92). 40. Ethiopian landscape. 41. 49. Farmer Mekonnen Shumbulo stands with his son, Mule, 2, in his maize field
  • 44. identifying the problem child hiv/aids victims; global mortality effects “Population growth decreases through premature deaths; a reduction in fertility; and changing sexual behaviors. As the HIV/ AIDS epidemic progresses there are fewer women of child-bearing age. HIV- positive women are less likely to conceive and carry the Children affected infant to term” (62: 61). And, while by HIV/AIDS suffer condoms and abstinence can protect against diseases, from poverty, they also decrease fertility rates (contributing to decreasing homelessness, 34. populations) in many African communities where children discrimination, are essential to societal and early death. functioning. 50. Ethiopia: Three children’s bodies lie in a makeshift morgue at the South Oromia clinic. 44
  • 45. aids in ethiopia: born without rights “Increased deaths in young adults are the most measurable effect of AIDS.” By 2010 life expectancy could fall to under 27 years of age in some areas of Africa. “How will this affect societal ability to function?” (62: 57-61). Maso Aliyi mourns his dead child, Shibre Aliyi, at his home in Ethiopia. Image sourece: LA Times. HIV/AIDS leads to rising infant and child mortality, falling life expectancy, changes in the population size, growth, and structure all of which have enormous effects on national psyche, economy, and social welfare. 51. Archived from “Bombs fall on Babylon.” 52. Relatives mourn over the the body of a one year old child who died of malnutrition. Darfur,
  • 46. identifying the problem effects on children; mother to child transmission mother to child transmission HIV transmission from an “The overall risk of MTCT of hiv-positive HIV is substantially increased by maternal factors: high mother to her child can viral load in plasma, a occur during pregnancy, low cd4+ cell count, and labour, delivery or AIDS, by vaginal delivery “MTCT” breast feeding. or prematurity...” . (63: 1) Photograph by Niall Crotty 53. Photograph by World Health Organization An Akiye woman and her baby. August 19, 2008. Photo by Pernille Bærendtsen 46
  • 47. aids in ethiopia: born without rights MTCT can be The risk of reduced from 15-25% to under 2% by combining administration of antiretroviral prophylaxix during pregnancy and delivery, elective ceasarean avoidance of section and breast feeding. 54. 55. 56. 57.
  • 48. identifying the problem mother to child transmission; breast feeding replacement feeding is “When acceptable, feasible, affordable, sustainable and safe, HIV infected mothers should avoid breast feeding completely” (63:1) . 58. 59. 48
  • 49. aids in ethiopia: born without rights “The impact of HIV infection on infant feeding practices is a significant public-health issue, for two reasons: 61. malnutrition is “Where breast feeding is an underlying cause of common and prolonged, 60% of child deaths, transmission through and underweight breast-feeding may account is the leading for up to half of HIV underlying cause of infections in infants and disability and 60. young children” (63: 1) . 62. illness worldwide” (63: 3).
  • 50. understanding the problem understanding the context; social environment and development understand how “To children grow up under varied environmental conditions, one must “Patterns of be willing to go to where social organization conditions already those exist, to examine them and behavior such 67. Chinese mother and child as mating patterns and respect 34. Ethiopian mother and child 66. Hippo mother and child with and emotional display rules, in detail, and to change one’s assumptions in the face of which vary across new observations” (44: 9) . species in much of the animal kingdom, vary across populations in 63. Elephant mother and child 64. Menaksi temple, dreaming in mother’s 65. Gorilla mother and child homo sapiens” . (44: 11) arms 50
  • 51. aids in ethiopia: born without rights HIV and AIDS are causing untold human suffering. In some countries, the virus is reversing decades of developmental 69. Photo by Kevin Fleming/CORBIS progress. “While the epidemic’s evolution has varied across regions, there is one common 68. denominator: HIV and 67. Geoffrey Owino, the youngest of Christine Kanga’s five children, is HIV- AIDS are increasingly a positive. Christina used to run a successful tailoring business but has not been able to work for a long time. Instead she gets disease of the young and up for short periods each day to teach her eldest son how to sew - an attempt most vulnerable, particularly girls” (65). to pass on vital skills to her family’s next generation. © World Food Program, Vanessa Ethiopian mother & child. Sebastian Rich Photo. Vick. Sebastian Rich Photo. 69.
  • 52. understanding the problem understanding the larger context; socialization 71. 72. 73. 74. Socialization is, “the process through which individuals acquire the knowledge , skills, and dispositions that enable them to participate as more or less effective members of groups and the society” . (44: Foreword) 80. 76. 75. 77. 78. 79. 52
  • 53. aids in ethiopia: born without rights “A population tends to share an environment, symbol systems for encoding it, and organizations and codes of conduct for adapting to it...Human largely attributable to the operation 81. 82. of specific social organizations...following culturally prescribed scripts... No account of ontogeny in human adaptation could be adequate without inclusion of population-specific patterns that establish pathways of behavioral development of children” (44: 12). 84. 83.
  • 54. understanding the problem understanding the larger context; childhood 70. The nature of childhood in any human population begins with how adaptive functions are socially and culturally organized in the local environment . (44:12-13) 54
  • 55. aids in ethiopia: born without rights 86. 85. Africa, Photographer: Alastair McNaughton 85. 88. 87.
  • 56. understanding the problem understanding the larger context; childhood in africa The model of African childcare is referred to as the pediatric model, “because its primary concern is with the survival, health, and physical growth of the infant... The American [model] is the, “pedagogical , because its primary concern is behavioral with the development and its preparation for educational interactions” (44: 25). 89. 90. 91. 56
  • 57. aids in ethiopia: born without rights The fundamental differences in child rearing prohibit the implementation of medical, scientific, and social advancements thathelp a country economically, politically, and socially thrive. In order to improve the quality of life in third world nations, design must be conducive to the culture in which it will exist. If advances penetrate youth culture, improvements will sustain the aging of generations. 92. 93.
  • 58. understanding the problem understanding the larger context; motherhood 94. 95. 99. When functioning as the primary caregiver, mothers of all species and cultures “are motivated by a 97 concern for the health and survival of their infant” (44: 23) . 96. 98. 58
  • 59. aids in ethiopia: born without rights “Some experts liken the sensual tie between mother and child to the exclusivity of the monogamous marriage bond” . (64: 6) 100. 102. “The cultural variation in beliefs about pregnancy begins with beliefs about the causes of conception, which 103. can express meanings and values central to the identity of a 101. culture” (59: 1). 104.
  • 60. understanding the problem understanding the larger context; motherhood in africa “In virtually all the social and cultural contexts of indigenous Africa, childbearing is necessary for moral virtue, spiritual continuity, and material well-being; the more descendants one has, the better off one is considered to be” (44: 33). 106. 107. pregnancy encompasses physiological, psychological, spiritual, The experience of and socio-cultural dimensions. Because the future of any given culture depends heavily on women’s procreative abilities, these abilities carry strong social significance. Thus, every culture takes upon itself the regulation and management of women’s pregnancies (59: 1). 105. 60
  • 61. aids in ethiopia: born without rights barren woman “A or childless man is [Africa’s] image of the worst possible fate: an incomplete person who has not attained the foothold necessary for full adulthood and spiritual continuity . In some African socieites, such people are 108. pitied and feared” . (44: 32)
  • 62. understanding the problem understanding the the larger context; breast feeding “In the United States, maternal Universally, a woman’s breast feeding has biological purpose long been advocated as a key to good mothering, womanly is to reproduce. Gaining honor, and even to women’s respect as a mother 109. citizenship...The notion of breast feeding as a mother’s obligation requires a commitment to both her child and the larger to breast feeding social body extends from the because it personally colonial days, when nursing was and publicity solidifies a a mother’s sacred duty” (64: 9). woman’s maternal status. Breast feeding, which is often considered the measure of the mother, 112. physically and 114. spiritually, literally and metaphorically, represents the transference of mother to child. 110. 111. 113. 115. 62
  • 63. aids in ethiopia: born without rights 116. “Breast feeding plays heavily into our notions of “good” and “bad” mothers, which touches on one of the dominant emotional issues 119. of the twenty first century: “Mother’s bodies, female sexuality, and the act of feeding at the relationship the breast embodies anxieities addresing whether women’s between breast feeding bodies are “pure” or “dangerous.” The questions surrounding breast feeding “provides a lens with which to sharpen our focus on the and motherhood” (64: 1) . 117. 118. conflicts shaping and dividing women’s lives” (64: 1-2).
  • 64. understanding the problem understanding the larger context; breast-feeding in africa In traditional Ethiopian societies women often refuse breast feeding alternatives because they fear stigmatization family and the by the community. If a woman does not breast feed, it may be assumed that she is HIV-positive, exposing her to the 59. Himba Mother and Child. 121. Young Himba Girl. physical and emotional “A woman's worth is measured in terms of her abuse associated with role as a mother and wife,” status of which are the virus . (70) 59. Young Himba Woman. 120. reinforced through the act of breast feeding (45: 114). 64
  • 65. aids in ethiopia: born without rights “The HIV [breast Ethiopian women are expected to breast feed for it is safe, nutritious and ensures infant-mother feeding] story is so bonding, which is an important element of the powerful because it native culture (71: 84). literally and metaphorically tells us which mothers have dangerous bodies” (64: 2) . 122. HIMBA MOTHER AND CHILD 3 , Artist: Michael Sheridan. 122.
  • 66. understanding the problem breast feeding; prevalence 126. “Up to 94% of infants in the world 123. are estimated to be ever breast fed, 79% continue at one year, and 52% at two years, with an estimated median duration of breast feeding of 21 124. months” (63: 3) . 125. 127. 66
  • 67. aids in ethiopia: born without rights 128. 131. “Nearly all infants in Globally an estimated developing countries 41% of infants under four months of age and 25% are initially breast fed, under six months are and most continue exclusively breast fed; until at least six months of in sub-Saharan Africa 23% of infants under six months age but often into the of age are exclusively second year” (63: 3) . breast fed” (63: 3). 129. 130.
  • 68. understanding the problem breast feeding prevalence; femininity The Tempest, Giorgio Barbarelli da Castelfranco. Birth of Venus, Sandro Botticelli The female sex is globally recognized through the presence of breasts. 68
  • 69. aids in ethiopia: born without rights Spirit Spouse. Virgin and Child, Jean Fouquet. Le Dejeuner Sur L’Herbe, Edouard Manet. The breasts, across space and time, embody the essence of female sexuality.
  • 70. understanding the problem breast feedng and femininity; motherhood the essence of woman lies in reproduction Motherly differences aid in defining relationality within society. Motherhood creates a heirarchy 133. amongst women, separating mothers from “other” women deemed less moral. Motherhood is essential to the Motherhood is a class making and marking duty (64: 11) . creation of female identity. The act of motherhood physically differentiates women from men . (64: 52) 131. 132. 134. 70
  • 71. aids in ethiopia: born without rights Woman who “see child primary rearing as their responsibility in life, and one that is ultimatley theirs alone ” is what sociologist Linda Blum refers to as “exclusive motherhood” . (64: 5-6) 135. 136. 93.
  • 72. understanding the problem breast feeding and motherhood; cultural significange By Maitum Information Office, August 2007 “Breast feeding has long been advocated as a mothering, key to good womanly honor, and even to women’s citizenship... 137. “Breast feeding baby in Ethiopia.” According to sociologist Pam Carter, breast feeding is The notion of breast-feeding as a“conversation about femininity” and a mother’s obligation to both her child and the larger “obligations of the maternal body to the larger social body” (64: 2). social body extends from the colonial days, when nursing was a mother’s sacred duty...when it was considered a mother’s civic duty to the growing republic” (64: 19). 138. 93. 139. 72
  • 73. aids in ethiopia; born without rights To be respected as a mother a women is expected to properly raise her child, which requires a commitment 143. to breast feeding. The “lens [on] breast feeding reveals the In the current era, breast feeding has become collision of public and private “the measure of concerns with the maternal body” (64: 7). motherhood. This issue [of motherhood] confounds the gender basis of citizenship 140. and obligation to [society]: women serve the nation through motherhood, and men, through the military” (64: 3). 141. 93. 142.
  • 74. understanding the problem breast feedng and motherhood; common practices 144. 145 According to the World Health Organization states that “the optimal feeding pattern for overall child survival is exclusive breast feeding for the first six months, and continued breast two years and beyond, with feeding for up to 148. complementary feeding from age six months” . (63: 5) 146. 74
  • 75. aids in ethiopia; born without rights In Ethiopia, approximately 96% of infants are breast fed at some point. 147. 148. “Breast feeding can range from a six-week dose of bonding ‘ ’ to an intense, several year relationship” (64: 3). 148. 149.
  • 76. understanding the problem breast feeding practices; health Exclusive breast-feeding enables children to achieve optimal growth, development and health. Ethiopian children welcome an aid convoy. Photograph by Crispin Rodwell. 76
  • 77. aids in ethiopia: born without rights Nursing is an important part of overall maternal and child health. It may reduce a mother’s risk of ovarian cancer and osteoporosis while promoting weight loss, child spacing (less than 2% risk of becoming pregnant) and a fast return of the uterus 151. to its prepregnant state. A lack of exclusive Breast milk provides breast feeding optimum nutrition, during the first six months stimulates psychosocial of life contributes to over and neurological development, and strengthens one million a child’s immune system. Breast feeding may avoidable child also heighten IQ, increase visual acuity, condition deaths each year . (1) the body to better process fats and cholesterol, prevent obesity, and enhance facial, dental, and speech development (9: 4) , (63: 3). 150. 151.
  • 78. understanding the problem breast feeding health; hiv/aids relationship “Available interventions can substantially reduce the risk of transmission during pregnancy, labour and delivery, but not yet during breast feeding” . (63: 3-4) 153. 154. For HIV-positive mothers, the decision about breast feed can be difficult. Many whether or not to women are reluctant to get test for HIV due to the wide spread associated stigma. So, with unknown status women must weigh the risk of breast feeding, exposing the child to HIV, against using replacement feeding, which increases the likelihood of death from other infections and diseases. According to UNICEF, “babies who do not breast feed are six times more likely to die from diarrhoea or respiratory infections than babies who do breast feed” (63: 3-4). 67. A young HIV-positive mother holds a photo of herself and her two children. She will die prematurely 152. leaving her children as orphans. Photography by Andrew Petkun, sourced from 78
  • 79. aids in ethiopia: born without rights Breast feeding by an infected mother increases the risk of HIV infection by 5-20% to a total of 20-45%. 155. Mother to child transmission through breast-feeding is cumulative; the longer a child breast feeds, the greater the risk of transmission 152. through breast feeding. Breast The recommended infant feeding for two years or more can double the overall risk of feeding policy is “problematic to implement in sub-Saharan MTCT of HIV to about 40%. Africa due to stigma associated Additionally, “recent maternal with not breast feeding; infection with HIV may raise 67. A child being spoon-fed by her mother at non-exclusive breast-feeding the risk of transmission through ! the Nutritional Rehabilitation Unit (NRU) in Nsanje district hospital, in Malawi in January norms;” and low awareness breast feeding to twice that of a 2006. This child is nine years old and severely underweight, she suffers from tuberculosis and of HIV status. If a woman does woman with earlier established HIV as well as malnutrition. She contracted HIV from her mother during pregnancy. Photograph not breast feed, she may be infection, [most likely due] to by John Coy, sourced from AVERT. org. the high viral load associated assumed HIV-positive (11). with recent infection” (63: 1-4). 156. 157. Korcho village, Karo tribe, South Ethiopia.
  • 80. understanding the problem child hiv/aids; in africa Sub-Saharan Africa is home to nearly 90% of all children living with HIV. 164. 158. 159. “It is hard to overemphasise the trauma and hardship that children affected by HIV and AIDS are 160. forced to bear. The epidemic not only causes children to loose their parents or guardians, but sometimes their childhood as well” (3) . 160. 161. 162. 80
  • 81. aids in ethiopia: born without rights In seven African countries, child mortality has increased by 20 - 40% due to HIV/AIDS. 165. 166. 168. 160. 167. If HIV/AIDS continues to thrive, “by 2020 there will be about half the children under five there there would have been in the absense of AIDS” (62: 64). 159. 170. Aids orphans sleep during. South Africa. Photograph: Kim Ludbrook/EPA.
  • 82. understanding the problem child hiv/aids; in ethiopia According to UNICEF, there are 6 million orphans (ages 0-14) in Ethiopia; that is roughly 8% of the entire population. Nearly 1,000,000 children have been orphaned by AIDS alone. That makes Ethiopia home to the largest population of HIV/AIDS affected children. 163. 82
  • 83. aids in ethiopia: born without rights Orphans face psychological pressures, social stigma, and discrimination, especially if they are able to attend school. A teacher from KwaZulu-Natal reported “we can tell which children are orphans, they are dirty and uncared for and have many difficulties” (62: 75). 174. AIDS orphan. 171. “Three eyes, HIV/AIDS hospice, Botswana.” UNICEF and their global partners define an orphan as a child (under 18) who has lost one or both parents. “UNICEF and numerous international organizations adopted the broader definition of orphan in the mid-1990s as the AIDS pandemic began leading to the death of millions of parents worldwide.” 169. Orphan, Malawi. 171. “White dress, orphan day care.” 172. HIV-negative child with HIV-positive parents.
  • 84. understanding the community ethiopia; country overview Ethiopia is a country located on the Horn of Africa with Erotrea to the north, Sudan to the west, Kenya to the south, Djbouti to the northeast, and Somalia to the east. 84
  • 85. aids in ethiopia: born without rights 85% of the Ethiopian population lives in rural areas. A major cause of health problems in Ethiopia relates to the isolation of communities from modern society. As a result, widespread illiteracy prevents the spread of knowledge and hinders distribution of the health services. Of Ethiopia’s 77 million people, 3 million are HIV-positive, that is 7% of global HIV/AIDS cases. In 2005, 1 out of every 16 children died of AIDS. Most health institutions were created in urban centers prior to 1974 and were concerned with curative rather than preventive medicine (1). A typical landscape of Tigray region, Ethiopia near the archaeological site of Yeha. January 2002. Jialiang Gao Photography.
  • 86. understanding the community ethiopia; cultural overview Ethiopia is the only “Ethiopia has experienced extensive social and political country in Africa to upheaval, recurrent drought and famine, war, and have escaped Western degradation of natural resources. High mortality, low life expectancy, high fertility, constant population colonization. movement, and poor infrastructure characterized Yet remains one of the this country. In 1985, Ethiopia embarked on a massive world’s poorest decentralization effort that created nine regional states countries. Ethiopia’s struggle based on ethnic and national identities” . (42:1) with poverty and slow development is inextricably tied to its history of conflict, “...largly [a] Muslim and Christian population, Ethiopians drought, recurrent of different religions have traditionally lived in relative harmony, and environmental rural, agrarian (85%) culture, sharing a predominantly degradation” . (41: 4) bound to the land and conservative values” . (41:4) 157. 173. 86
  • 87. aids in ethiopia: born without rights Elders in Ethiopia are highly “The African family is respected and are not a private haven of responsible for settling disputes consumption and informal within their community. recreation separated 157. from a public world of economic production and formal relationships, as the modern Euroamerican family has been characterized; it is, on the contrary, part of a public world in which economic production is 175. domestically organized and kinship often constitues the formal basis for local governance” (44:28). 176. Ethiopia's Omo region, a Hamar child peeks 177. BoazImages - Boys from the Surma tribe on the banks of the Kibish river in Ethiopia. out from under her mother's shawl
  • 88. understanding the community ethiopian culture; family planning Family planning is an issue of human rights, women’s rights, and women’s empowerment. It is key to development.” (Family Health Department) 178. Flamingos. Lake Abijata, Ethiopia. The connection between HIV/AIDS and family planning is crucial in the war against HIV/ AIDS. By reducing unitended and high risk pregnancies, 178. Flamingos . Lake Abijata, Ethiopia. family planning can lower the Despite the importance of integrating HIV/AIDS instances of maternal and transmission to family planning, very “few organizations child injury, illness, HIV/AIDS have attempted to integrate any aspect of HIV/AIDS into transmission, and death (42: iii) . their family planning programs” (42:8). 178. Ethiopian children. 178. Children of the Arbore tribe, Ethiopia. 88
  • 89. aids in ethiopia: born without rights “Geographic distribution plays an important role in contraceptive use in Ethiopia. Married urban women are ‘nine times more 178. likely to use a modern Knowledge of contraceptive methods contraceptive and access to family method and seven times planning services are more likely to use a inadequate in Ethiopia, traditional method’ than particularly in rural areas, their rural counterparts.” This where total fertitlity geographic and growth rates are barrier contributes to the markedly high (seven or eight children per family). In difficulty surrounding 2000, only 8% of women contraceptive attainment in Ethiopia were using and high fertility rates (42:2). 178. Members of the Arbore tribe, Ethiopia. contraceptives (42: 10) . 178. Members of the Arbore tribe, Ethiopia.
  • 90. understanding the community ethiopian cultural roles; men Ethiopia remains one of Men tend to marry younger traditional Africa’s most girls, often a decade their societies, exemplifying junior, making HIV/AIDS a male superiority. transgenerational epidemic. 177. Men are considered superior to their wives and have more opportunities for educational expansion and employment (43). 177. 177. 177. 90
  • 91. aids in ethiopia: born without rights 177. 177. In Ethiopia, men and women have clearly defined roles. Traditionally men are responsible for providing for the 177. family and for dealing with “Marriage typically family contact outside gives the husband and his the home. The traditional kin rights over the view was men neither cook nor shop because wife- that is, over her housework tends to labor and/or the children be women’s job. This view she bears - in exchange for a continues to be held in many bride wealth” (44:29). areas of the country (43). 177. 177.
  • 92. understanding the community ethiopian cultural roles; women Women are responsible for domestic work and looking after the children . (45: 114 ) 179. Afar Girl, Ethiopia. 179. Somali girl near Ethiopia “Ethiopian women traditionally have suffered sociocultural and economic discrimination and have had few opportunities for education, employment, and personal growth. Even thecivil code affirms the woman’s inferior positions. “An improvement in economic conditions would improve the standard of living of women, but real change would require a transformation of attitudes of governments and men regarding women” . (45: 114 ) 179. “Hamar girl near Turmi - Ethiopia.” 179. Woman from Kono tribe, Ethiopia 179. Ethiopia Harar woman. 92
  • 93. aids in ethiopia: born without rights Women’s inferiority is complicated by social and economic patterns, deeply rooted in tradition, that place powerful constraints on 179. Girl from the Hamar tribe, Ethiopia 179. “Surma woman - near Kibish - South west Ethiopia.” Culturally based abuses include: Female Genital womens’ rights. Cutting (FGC), early and forced marriage and childbearing, When a woman’s husband rape, wife inheritance, and domestic violence. “More dies she is often forced than 74% of Ethiopian women have undergone FGC. An uncircumcised woman is thought to be promiscuous to marry his brother. “Today, this practice is feeding and a threat to the family. Many believe that it is a religious the HIV/AIDS epidemic, when obligation, while others believe that it protects a woman’s virginity and is medically beneficial. Traditionally, women widows lose their husbands perform the procedure with crude, unsterilized knives or razors, to the virus and carry it to putting girls at risk of infection or contracting HIV” (41:6-7). the next marriage” (41:7). 179. “Hamar girl near Turmi.” 157. “Ethiopia Lafforgue.” same as personas
  • 94. understanding the community ethiopian cultural roles; children As an agrarian society, children are considered an unmixed blessing to their parents and their kin groups. The high value set on children and fertility has its roots in the economic, 180. “Access to basic and quality social, and spiritual goals of parents. education and educational materials in Ethiopia is Children are relied on to preform many of generally low. This affects the labor intensive, every day tasks, to the benefit the cognitive development of the family. In adulthood, children of the child in the early years of life and beyond. Female are expected to provide their aging parents enrollment/attendance with security and protection (44: 31). compared to male is low” (2). 37. 94
  • 95. aids in ethiopia: born without rights As soon as they are able, girls are responsible Parents are stricter with their daughters than for caring for younger siblings, helping in food their sons; often parents give preparation, and hauling water and fetching firewood . (41:5) more freedom to males than females (43). 28. Girls are of lower status and command little respect relative to boys. Girls are taught to be subservient; a disobedient 181. Arbore girl, Southern Ethiopia. 182. daughter is an embarrassment A girl’s value stemps from the expectation that she will to her family. “Low status establish kinship bonds through marriage to another characterizes virtually every family, bolstering the status of her family within the aspect of girls’ lives” (41:5) . 29. Photographer: J. Rosenkranze; Ethiopia. community (41:5). 181.
  • 96. understanding the community meet the people; personas Photograph by Michael Clancy 157. 157. 157. 157. Unknown Assefa Makeda Kassa Hagos 7 months after conception 2 years 5 years 6 years 12 years Mother, 16 years HIV-positive HIV-positive HIV-negative Virgin, assumed HIV-negative Died of AIDS with child in womb 2 older siblings, both HIV-negative 3 older siblings, two are HIV-positive Oldest of 3 children, 1 is HIV-positive Engaged HIV-positive husband AIDS-positive mother Mother died of AIDS HIV-positive mother Status of fiance is unknown 2 children, 1 HIV-positive HIV-positive father Father died of AIDS Father died of AIDS No children 96
  • 97. aids in ethiopia: born without rights 157. 157. 157. 157. 157. Dahnay Abrihet Tenagne Bekele Berhanu 19 years 16 years 20 years 21 years 40 years HIV-positive Status unknown AIDS-positive HIV-positive HIV-negative 2 months pregnant 4 months pregnant HIV-positive husband HIV-positive wife HIV-negative husband HIV-positive husband Husband’s status unknown 3 children, 1 HIV-positive 2 children, 1 AIDS-positive 8 children, 2 HIV-positive, 2 lost to AIDS 1 HIV-negative child No children Raising 4 grandchildren, 1 HIV-positive
  • 98. current solutions overview; hiv/aids, global United Nation’s approach to preventing mother to child transmission: 98
  • 99. aids in ethiopia: born without rights 1. “Prevention of HIV infection in general, especially in young women and pregnant women” (46: 9). 2. “Prevention of unintended pregnancies among HIV-infected women” (46: 9). 3. “Prevention of HIV transmission from HIV- infected women to their infants” (46: 9). 4. “Provision of care, treatment and support to HIV-infected women, and their infants and families” (46: 9). 183.
  • 100. current solutions critique; hiv/aids, drug treatment and scientific advancements Success: Failure: • Slows the progression from HIV to AIDS • Fear of alienation and abuse associated with HIV/AIDS deters many from getting tested and seeking health care • Antiretroviral prophylaxis with one drug alone can de- crease rate of infection in breast fed infants (assessed at • Access to health care and treatment is limited and 2-3 months of age) to 10%; with two or more drugs, the expensive, especially in developing countries transmission rate is reduced to 7% (46: 9) • Infants are at risk for entire duration of breast feeding • Drugs are methods of treatment, not prevention • Peripartum antiretroviral prophylaxis does not prevent • Virus detection slows down the spread transmission through breast-feeding (46: 3) • Leads to improved care and deeper understanding of HIV • Tests are not always accurate and have specific guidelines and related viruses and time frames that can be difficult to abide by • Without antiretovial treatment, 60-75% of children with • Scientific advancements are experimental and risky, long HIV die before the age of 5. With treatment, this figure term consequences on self and others is undetermined. can be reduced to about 20%. (47) 100
  • 101. aids in ethiopia: born without rights 184. “Vaccine Inniative” 185. Antiretroviral drugs A caregiver pours medicine into a dosing cup. 186. A failed HIV vaccine Anti-retroviral drugs are available for free in Kenya, but are not reaching two-thirds of the children who need them. © 2008 Ben Lowy/VII Network
  • 102. project overview critique; hiv/aids,outreach and organizations Success: Failure: • Uses benefits of a global community to help a specific • Never enough funding or resources area • Abundence of organizations speads resources over a • Increased funds and awareness for HIV/AIDS research, larger area, which doesn’t allow for goal maximization treatment, and prevention • Lack personal connections between volunteers/financial • Strengthens bonds between communities world wide donors and victims (People tend to be less inclined to give when the effects of their efforts are out of sight) • Offers a chance for people to contribute through a range of elements (i.e. funding, time, medical care, etc.) • Te more organizations present, the less any one person feel it is his or her responsiblity to help (Schwartz & Gottlieb, 1980). • “More than 48 international and 55 local NGOs have been involved in the prevention and control of HIV/AIDS in Ethiopia (Meche, 2002)” (42: 9). 102
  • 103. aids in ethiopia: born without rights UNICEF is an advocacy organization Doctors Without Borders is an Self-help Assistance Program aims to “UNAIDS, the Joint United Nations AVERT is an international HIV and AIDS focused on protecting children’s independent international medical create a better, more efficient, less costly Programme on HIV/AIDS, is an innova- charity based in the UK, working to human rights. organization that delivers emergency aid approach to development work. tive joint venture of the United Nations AVERT HIV and AIDS worldwide. Their to people in need. family, bringing together the efforts and goal is to “inform people, help people resources of ten UN system organiza- to protect themselves, and ultimately, to tions in the AIDS response to help the save people's lives” (3). world prevent new HIV infections, care for people living with HIV, and mitigate the impact of the epidemic” (4).
  • 104. current solutions critique; hiv/aids, shelter Success: Failure: • Those widowed by AIDS and forced to leave their com- • Shelters are often too difficult to get to; if a means of munities have a safe refuge transportation is available, the family must have adequate funds to make the journey • Children who have been orphaned by AIDS, many of whom would be forced to earn money as sex workers, • Victims of the virus must risk exposing their status upon have a secure home leaving, risk physical and emotional abuse from their community and/or family • Patients receive medical care and emotional support • Obtaining funding to adequately house and support • Schooling and skills training can be provided, which people in need is extremely difficult allows residents to maintain hope and life 104
  • 105. aids in ethiopia: born without rights 157. Asmara girl Eritrea HIV-positive child, Bethesda House Orphanage. Menua, a child at HardtHaven Children’s Home. Ace Africa in a non-profit Kenyan based organization that provides vulnerable Bethesda House Orphanage in HardtHaven Children’s Home in Ghana houses children, some of which are households with safe shelter. South Africa cares for abandoned babies HIV positive. There goal is to, transform, “AIDS orphans from hopeless, suffering who are HIV Positive or have AIDS. victims into productive members of their community.”
  • 106. current solutions critique; hiv/aids, volunteer services Success: Failure: • The elderly and disabled who have been affected by • Finding steady volunteers who can physically, HIV/AIDS are provided with care emotionally, financially, and willingly give up time is challenging. • Provides support network for those affected by the virus • Volunteers can generally only access areas that have somewhat successfully modernized; rural villages • Can offer social activities which strengthens the with little or no communication to major cities are emotional well being patients left out of touch. • “...infant feeding counseling done on a regular basis was very beneficial in promoting healthy feeding methods” (47). 106
  • 107. aids in ethiopia: born without rights 187. “African Impact,” Clinic Assistance & HIV/AIDS Awareness, St. Lucia, South Africa, South Africa 187. Orphan Day Care & HIV / AIDS Education, South Africa
  • 108. current solutions critique; hiv/aids, breast feeding alternatives Success: Failure: • Mothers with HIV are advised not to breast feed • Breast feeding substitutes are not globally acceptable, whenever the use of a breast milk substitute is possible feasible, affordable, sustainable and/or safe • When breast feeding alternatives are acceptable, feasible, • Breast milk provides health benefits that alternatives don’t affordable, sustainable and safe, the risk of MTCT is reduced by feeding substitutes • Many women lack access to knowledge and resources • Breast feeding alternatives have different chemical • Breast feeding alternatives in some communities is properties than breast milk equivalent to exposing HIV status (47) • A mother’s nipples may become sore or cracked, in • “Many women breast feed because it is something that which case breast feeding alternatives may be necessary “good mothers” do without fail, a norm that some women find overwhelmingly compelling. The importance of the psychological bond that is created between mothers and infants through breast feeding has been well described by mothers and researchers around the world. Such a bond is not easily sacrificed, particularly when social and economic pressures apply” (47). 108
  • 109. aids in ethiopia: born without rights The children are enjoying a lunch at a child feeding program in Rio Janeiro, Brazil. Credit: Carolyn Njuki / GBGM. A volunteer at a day care center in a township in Cape Town, South Africa. © Cross-Cultural Solutions 188.
  • 110. current solutions critique; hiv/aid, abstinence Success: Failure: • Ultimately, abstinence is the most affective way of • In certain cultures, such as Ethiopia, women’s usefulness preventing MTCT. and character judgment is based off of their ability to bear children • AIDS prevention money is spent on promoting abstinence in countries where girls marry as young as 8 or 9 • Prostitution is very common in certain places, and for some women the only means of survival, especially where HIV/AIDS is rampant. 110
  • 111. aids in ethiopia: born without rights 189. Mother and child. 193. Mother and a child, Cambodia’s Ratanakiri province. 189.Mother and child. 190. 191. Mother and child. 192. Pregnant Himba wife, Ethiopia. 194. Teen Mother.
  • 112. expanded reserach research opportunities; global needs “The main current public health research question is whether breast feeding by HIV-infected mothers can be made safer in order to minimize transmission risk, given the possible adverse refraining effects of from breast feeding” (46: 19). 112
  • 113. aids in ethiopia: born without rights “Given the risk from breast feeding, reduction of transmission is one of the most pressing such HIV public health challenges confronting researchers, health care professionals, health policy-makers and HIV-infected women in many parts of the world, especially in developing countries. Efforts to prevent transmission by breast feeding should take into account the need to promote breast 177. 67. Photograph by John Coy feeding of infants and young children in the general population. Countries need to develop (or revise) a comprehensive national infant and young child feeding policy to include HIV and infant feeding, while continuing to protect, promote and support early, exclusive and continued breast feeding for infants of women who are HIV-negative or of unknown HIV-infection status” (46: 3-4). A two-year child clutches to his grandmother. 195. Photograph property of International Medical Corps.
  • 114. expanded research inspiration; human rights “HIV positive children should enjoy full rights for treatment and schooling, just like other children.” Valeria 2. Valeria, HIV positive mother and activist (Ukraine) 114
  • 115. aids in ethiopia: born without rights United Nations Declaration United Nations Declaration of Human Rights (1) of Human Rights for Children (2) Article 1: Principle 2: “All human beings are born free and equal in dignity and rights.” “The child shall enjoy the benefits of social security. He shall be en- titled to grow and develop in health; to this end, special care and Article 3: protection shall be provided both to him and to his mother, including adequate pre-natal and post-natal care. The child shall have the right “Everyone has the right to life, liberty and security of person.“ to adequate nutrition, housing, recreation and medical services.” Article 25: Principle 5: (1) “Everyone has the right to a standard of living adequate for the “The child who is physically, mentally or socially handicapped shall be health and well-being of himself and of his family, including food, given the special treatment, education and care required by his par- clothing, housing and medical care and necessary social services, and ticular condition.” the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.” (2) “Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.”
  • 116. expanded research inspiration; the big picture Children with hindered rights are birthed into the world universally. Communities in nature and within the human race reproduce constantly, exposing infants, without choice, to the loves and losses of society. 196. Fetus in womb. 197. Dandelions. Moss and Mushrooms. Photo by Rick Scadlock. 198. Colored Muschrooms November 2007. 116
  • 117. aids in ethiopia: born without rights 199. Dividing Cancer Cells 93. Human Fibroblasts Infected with Adenovirus Diseases that spread uncontrolably: Malaria Diarroheal Disease 201. Human colon cancer cells in culture Chytridiomycosis 200. Hantavirus
  • 118. expanded research diseases; malaria Malaria: Perspective: “Malaria is caused by a parasite Malaria is a life-threatening disease called Plasmodium, which is transmitted via the bites of A child dies of malaria every 30 seconds. infected mosquitoes. In the human body, the parasites There were 247 million cases of malaria in 2006, causing nearly one multiply in the liver, and then million deaths, mostly among African children. infect red blood cells” (1). Approximately half of the world's population is at risk of malaria, particularly those living in lower-income countries. “Each year 350–500 million cases of malaria occur worldwide, and 202. Malaria blood cell over one million people die, most of them young children in sub- Demographics: Saharan Africa” (5). Occurs in warm, humid climates (like Sub-Saharan Africa) where “In areas of Africa with high malaria transmission, an estimated pools of water breed Anopheles 990,000 people died of malaria in 1995 – over 2700 deaths per day, or mosquitoes. “Non-immune 2 deaths per minute” (5). pregnant women are at high risk of malaria. The illness can result in high rates of miscarriage and cause over 10% of maternal deaths annually....HIV-infected pregnant women are also at increased risk” (1). 203. 118
  • 119. aids in ethiopia: born without rights Symptoms: “Fever, headache, and vomiting, and usually appear between 10 and 15 days after the mosquito bite. If not treated, malaria can quickly become life-threatening by disrupting the blood supply to vital organs. In many parts of the world, the parasites have developed resistance to a number of malaria medicines.” (WHO) “Fever, headache, chills and vomiting – usually appear 10 to 15 days after a person is infected. If not treated promptly with effective medicines, malaria can cause severe illness and is often fatal.” Current Solutions: “Prompt and effective treatment with artemisinin-based combination therapies; use of insecticidal nets by people at risk; and indoor residual spraying with insecticide to control the vector mosquitoes” (1) Malaria is preventable and curable (1) The best available treatment, particularly for P. falciparum malaria, is a combination of drugs known as artemisinin-based combination thera- pies (ACTs). However, the growing potential for parasite resistance to these medicines is undermining malaria control efforts 204.
  • 120. expanded research diseases, diarrhoeal Diarrhoeal: Perspective: “Diarrhoeal disease is caused “Diarrhoea occurs world-wide and causes 4% of all deaths and 5% of by ingesting certain bacteria, health loss to disability. It is most commonly caused by gastrointesti- viruses or parasites that may be nal infections which kill around 2.2 million people globally each year, spread by water, food, utensils, mostly children in developing countries” (1). hands, and flies. Most diarrhoea related deaths in children are due to dehydration, the loss of “Each year there are approximately 4 billion cases of diarrhoea world- large quantities of water and wide” (1). electrolytes (sodium, potassium and bicarbonate) from the body in “World-wide around 1.1 billion people lack access to improved wa- liquid stool” (7). ter sources and 2.4 billion have no basic sanitation. Diarrhoea due to infection is widespread throughout the developing world. In Southeast Demographics: Asia and Africa, diarrhoea is responsible for as much as 8.5% and 7.7% of all deaths respectively” (1). “The infectious agents that cause diarrhoea are present or are spo- radically introduced throughout the world. Diarrhoea is a rare occurrence for most people who live in developed countries where sanitation is widely available, access to safe water is high and personal and domestic hygiene is relatively good” (1). 205. 120
  • 121. aids in ethiopia: born without rights Current Solutions: Give more fluids than usual, including Oral Rehydration Therapy (ORT) and zinc Symptoms: “Depending on the type of infection, the diarrhoea may be watery (for example in cholera) or passed with blood (in dysentery for example)”(1). Diarrhoea due to infection may last a few days, or several weeks, as in persistent diarrhoea. Severe diarrhoea may be life threatening due to fluid loss in watery diarrhoea, particularly in infants and young children, the malnourished and people with impaired immunity.” (1). “Diarrhoea is also associated with other infections such as malaria and measles. Chemical irritation of the gut or non-infectious bowel disease can also result in diarrhoea” (1). 206.
  • 122. expanded research diseases; chytridiomycosis Chytridiomycosis: Perspective: Caused by the chytrid fungus, Batrachochytrium dendrobatidis which “One of the biggest threats facing is probably “transferred by direct contact between frogs and tadpoles, amphibian species and population or through exposure to infected water” (10). survival worldwide is the disease chytridiomycosis, caused by the The “fungus attacks parts of [frogs] skin that have keratin in them. chytrid fungus, Batrachochytrium Since frogs use their skin in respiration, this makes it difficult for the dendrobatidis” (15). frog to breathe. The fungus also damages the nervous system, affecting the frog’s behavior” (10). “Recent declines in amphibian diversity and abundance have contributed significantly to the global loss of biodiversity” (15). 207. Demographics: The origins and destinations are unknown. B. dendrobatidis is common in African frogs (15) “Chytridiomycosis was proposed as the cause of death in frog populations in the rain forests of Australia and Panama and was associated with the decline of frog populations in Ecuador, Venezuela, New Zealand, and Spain” (15) “Batrachochytrium has been found in every continent that has amphibians, except Asia” (15). 208. 122
  • 123. aids in ethiopia: born without rights Current Solutions: Research has been inconclusive “The disease may not kill frogs immediately, and they can swim or hop to other areas before they die, spreading fungal spores to new ponds and streams. This means it’s very important not to move frogs from one area to another” (10). An experiment done by Gerry Marantelli and Lee Berger involved a treatment with Terbinafin hydrochloride, daily baths, and a temperature controlled enviornment. 160 of over 900 frogs recovered and survived. Symptoms: Discolored and peeling skin (10) Peeling, on the outside layers of its skin (10) Behavioral changes (10) Sluggishness and loss of appetite (10) “Legs spread slightly away from [body], rather than keeping them tucked close...In more extreme cases, the frog’s body will be rigid, and its back legs will trail behind it” (10). 209.
  • 124. expanded research diseases; simian immunodeficiency virus and feline immunodeficiency virus Simian Immunodeficiency Virus (SIV) & Feline Immunodeficiency Virus (FIV) are diseases in primates and cats, respectively, comparable to AIDS. Overview of SIV: Transmission: “Simian immunodeficiency viruses (SIVs) are lentiviruses that cause It is theorized that people hunting acquired immunodeficiency syndrome (AlDS)-like illnesses in suscep- chimpanzees first contracted tible macaque monkeys” (8). the virus - and that cases were first seen in Kinshasa, in the HIV-1 and HIV-2, “originate in simian (monkey) immunodeficiency Democratic Republic of Congo. viruses (SIV) found in Africa. The source of HIV-1 was in chimpan- zees in Central African, while HIV-2 derived in West Africa from sooty mangabey monkeys” (62: 22). Symptoms: Comparable symptoms to aids, little else is known 210. 124
  • 125. aids in ethiopia: feline immunodeficiency virus (fiv) born without rights Overview of FIV: Transmission: Feline immunodeficiency virus (FIV) is a lentivirus (slow virus) that Not transmitted through causes infectious disease in domestic cats and cheetahs. It is similar to prolonged close contact HIV in humans (16). Transmission through bit wounds and sexual contact (16) Symptoms: Transmission in utero or through Eventually fatal, though it may not produce symptoms the mother’s milk is rare (16) Poor coat condition, persistent fever with a loss of appetite and slow, progressive weight loss (16) Inflammation of the gums and mouth and chronic infections of the skin, urinary bladder, upper respiratory tract, persistent diarrhea and a variety of eye conditions (16) Some infected cats experience seizures, behavior changes, and other neurological disorders (16) 211.
  • 126. prototyping opportunities; areas of intervention 1. General Health 2. Child Care 3. Fear 4. Child Caretaker 5. Social 212. 212. 212. 212. 212. 126
  • 127. aids in ethiopia: born without rights 6. Political 7. Economic 8. HIV Prevention 9. HIV Transmission 10. HIV Treatment 212. 212. 212. 212. 212.
  • 128. prototyping selected area of focus; prevention D ue to health benefits and societal importance of breast feeding, discouraging nursing in order to prevent mother to child transmission may not be the best option for Ethiopian mothers. Therefore, HIV/AIDS must be addressed before the disease has a spreads to the mothers of future generations. HIV/AIDS prevention must be integrated into the lives of Ethiopia children. In order for children to make informed decisions growing up, they must learn the dangers surrounding HIV/AIDS. As one of the most traditional societies in the world, modern awareness methods are not likely conducive to Ethiopian culture. However, if HIV/AIDS prevention is presented in a manner to with which children can relate and understand, infection rates will drop dramatically, restoring humans rights to children they had previously been stripped of. Education, a fundamental human right, is the most successful weapon in the war against HIV/AIDS. If the parents of today educate the parents of tomorrow, life in Ethiopia may once again thrive and the practice of breast feeding can continue without hindering the human rights of children. 157. Karo Tribe Children, Korcho Village, Ethiopia. 128
  • 129. aids in ethiopia: born without rights 157. Korcho Village Chidren, Ethiopia. 157. Korcho Village Child, Ethiopia. 157. Children near Turmi, South Ethiopia.
  • 130. prototyping inspiration; all of us the movie 130
  • 131. aids in ethiopia: born without rights “In the South Bronx, a young doctor embarks on a research project to find out why black women are being infected with the HIV virus at an alarming rate. Dr. Mehret Mandefro takes us into the lives and relationships of two of her female patients, Chevelle and Tara, as they identify and struggle with the social factors that put them at risk. Chevelle, abandoned by her family as a teenager, became addicted to drugs and dependent on sex with men to get attention and cash. When we meet her, she’s been clean for a year and is striving for financial independence. Tara suffered sexual abuse for much of her life and resorted to sex work to survive. Her current boyfriend is pressuring her for sex even though she is undergoing a series of invasive surgeries for cervical cancer. Despite her frail condition, Tara works to overcome her fear of saying no and gains new confidence along the way. As Chevelle and Tara strive for more power in their lives and relationships, Mehret expands her research to include women across boundaries of race, class and country. She also begins to grapple with these extremely personal themes as they appear in her own life. A visit to Ethiopia, her birthplace, and candid conversations with her privileged girlfriends in New York, yield a startling realization: heterosexual women across the continents face a dangerous power imbalance in the bedroom. When she lets her hair down, steps out of her doctor’s role, and confesses her own weaknesses, even this Harvard trained physician sounds just like one of us. ALL OF US is about AIDS but it is not a tragedy. It is a story of resilience, sisterhood and courage.”
  • 132. prototyping inspiration; dr. mehret mandefro, ethiopian-american hiv/aids specialist Photo by Heart and Soul Magazine 132
  • 133. aids in ethiopia: born without rights Dr. Mehret Mandefro is an Ethiopian-American physician, medical anthropologist, and founder of TruthAIDS, an organization working to prevent and treat HIV in the South Bronx by “actively engag[ing] people in dialogue that teaches about societal determinants of health...[in order to] create novel preventative health solutions” (12). media/film as Dr. Mandefro is advancing digital a medium of ethnography to teach about health. Her work is featured in the documentary entitled All of Us, and she is currently working on a new film entitled David the Piano Player.
  • 134. prototyping initial brainstorm; process 134
  • 135. aids in ethiopia: born without rights Activity brief: • Spider web of words associated with project • Identify common themes • Initial word categorization • Rewrite words in list form • Rewrite words on post-it to allow easy rearrangement • Represent each word visually (pictogram) Goal: • Inspiration for intervention Findings: • Immediate desire for categorization • Comprehend images faster than words • Over arching theme of health, HIV/AIDS fits into that • Language is a barrier Insights: • Many of the images fall into the “private” rather than “public” realm • Intervention must address need to comfortably intertwine public and private spheres • Visuals should be used instead of words Next step: • Increase number of images (include variations of image) • Present cards to thesis class to observe reactions
  • 136. prototyping expert feedback; dr. mehret mendefro “AIDS made everything visible that was invisible” (52) . “I get calls, especially from fathers, all the time and not that I they say, ‘It’s don’t want to talk to “Love is revolutionary. my kids about sex We often constrain it to [and the repercussions], I just don’t know how” very narrow dimensions . (52) and separate it from our 12. work. However, when “HIV is an internal individuals integrate it in all they do, the world identity” . (52) changes” (53). 12. 12. 136
  • 137. aids in ethiopia: born without rights “Designers have a major social responsiblity [in terms of breaking the silence surrounding HIV/ AIDS]...Art’s connection [to communication] is very strong” (52). “Human rights , and more specifically, social and economic rights “ People tell me, all the time, that they would know no geographical wear me around their neck if they could” (52). boundaries. My work is about teaching about the connection between health and human rights. This work takes me across many geographical boundaries, one of which is Ethiopia” (53) . 213. 12. “My most recent involvement [in Ethiopia] has been serving as a technical advisor to the Ethiopian Forum for Peace, Democracy and Development (EFPDD)... The work with the EFPDD presents an important opportunity for inter-generational dialogue.... I think it’s time young and old finally find ways of productively building bridges together....As far as public service is concerned, young and old need each other to prevent making the mistakes of the past and learning how to map a new future” (53). 214.
  • 138. prototyping solution; draft 1 138
  • 139. aids in ethiopia: born without rights Activity brief: • Thesis peers experiment with visual representations from brainstorm. Goal: • Understand appeal of the images people are drawn to Findings: • High response to instantaneously identifiable images • High response to provocative images • Users wanted direction and structure • Users touched and arranged cards into an “order” based on content • Users must be able to move and organize cards at their leisure; must be able to “control” the message being sent Insights: • Users drawn to use pictures of words that are not Solution; Draft 1 commonly spoken out loud in public EDULIFE is a two-step system that encourages HIV/AIDS education and the development of parent/child relationships. At • Pictures used to communicate messages that are a young age the child is given EDULIFE necklace, which bares uncomfortable to speak about publicly the burden of approaching difficult topics life HIV/AIDS. The • Users uncovered an innate objective: create a message necklace represents a promise of honest and love from parent that understandable to others to child, and acknowledges the challenges of growing up that everyone must face. When the child is of age, EDULIFE game is Next step: revealed and works in conjunction with EDULIFE necklace to • Create directions that bare burden of “deciding” to topic ensure comfortable communication for both parent and child. of conversation. Affords opportunity to join adornment EDULIFE necklace works in concert with EDULIFE game, acting and game as a constant reminder of everything the child learns through EDULIFE game.
  • 140. prototyping expert feedback; dr. mehret mendefro and hiv-positive patients know better you “If you do better.” -Tardrea Johnson, HIV-positive mother, (50) 214. Pediatric Clinic and Nutrition Program. Kandal, Cambodia tell my son that I am HIV-positive, I “I wanted to didn’t know how. I asked him what he knew about HIV/ AIDS and he shrugged his shoulders. So, I gave him brochures that covered the basics and I told him to read it. He went in his room and came out. He was so surprised at what he learned. I asked 215. him how he would feel if he knew someone that was He said ‘If I know someone close to me has HIV, I will want HIV-positive “How do you talk to know more.’ Then I told him I was HIV-positive and across boundaries?” - Dr. Mehret, (50) he wanted to learn more.” - Tardrea Johnson, HIV-positive mother describing HIV disclosure to her 14 year old son, (50) 30. Ugandan Child, Bwindi. 216. 140
  • 141. aids in ethiopia: born without rights “I didn’t tell anyone that I was HIV-positive for Men don’t have as many “ a long time. I didn’t know how to. The first person [supportive] resources.” - HIV-positive person, (50) I told was my father and he was very supportive. He comforted me.” -Tardrea Johnson, HIV- positive person, (50) 219. “I heard that a woman at my church told someone that I had AIDS. I can’t enjoy church now because all I think about is how angry I am. First of all, I 217. don’t have AIDS, I have HIV. To what extent do you want I am not HIV; Second of all, HIV to define you? I am not AIDS. So I don’t want to be identified that way.” - HIV-positive person, (50) 67. 218.
  • 142. prototyping solution; draft 2 142
  • 143. aids in ethiopia: born without rights Activity brief: • Test revised prototype in cross section to explore and understand the impact games have on communication. • Experiment with a necklace baring the burden of instruction users to discuss difficult topics, like HIV/AIDS. Goal: • Understand how to integrate necklace and game to reinforce each other Findings: • Using only images proved difficult • Were sexually relevant • Connection between game and necklace is very unclear • Necklace may be too gender/culture specific • Further categorization is necessary Solution; Draft 2 Insights: HAU (translated by anthropologist Marcel Mauss as the spiritual power of a gift) is a two-step system that encourages HIV/AIDS • Visuals help to comfortably communicate private matters education and the development of parent/child relationships. At a in the public realm young age the child is given HAU necklace, which bares the bur- • Images provoke, not replace, verbal conversation den of approaching difficult topics like HIV/AIDS. The gifting of HAU represents a form of social contract intended to embody a Next step: promise of honesty and love from parent to child. When the child • Explore how to use necklace and game as conversation is of age, HAU game is revealed and works in conjunction with initiators HAU necklace to ensure comfortable communication for both parent and child by using the ubiquitous challenges of physical and mental maturation as a source of bonding rather than defer- ence. The two elements of HAU work in concert, reinforcing the meanings attached to each element.
  • 144. prototyping solution; draft 3 146
  • 145. aids in ethiopia: born without rights Activity brief: • Examine and revise Goal: • Further understand purpose of game and define objective • Understand how to translate necklace/adornment into a portal of communication Findings: • Need something that anchors users; something familiar • Necklace needs to have an element that differentiates it from other adornment • Connection between elements needs simplification Insights: • Modify a game that already exists in order to limit amounts of “new territory” Solution; Draft 3 • Further categorization and structure is necessary to HAU (translated by anthropologist Marcel Mauss as the spiritual relieve user anxiety associated with relevant topics power of a gift) is a two-step system, a pendant and modified • Images visually represent what is uncomfortable to deck of cards, which encourages HIV/AIDS education and the communicate verbally development of parent/child relationships. At a young age the • Necklace serves a reminder of game interactions child is given HAU. The gifting of HAU represents a form of social contract intended to embody a promise of honesty and Next step: love. The elements of HAU ensure comfortable communication • Examine how to ensure adornment as a portal of for both parent and child by supplying a portal (HAU pendant) and medium (HAU game) for communicating about difficult communication and gaming as a medium topics, like HIV/AIDS. The pendant encourages approaching topics and the game shows you “HAU” to talk about them.
  • 146. project overview solution; draft 4 122
  • 147. aids in ethiopia: born without rights Activity brief: • Revise and simplify Goal: • Revise and understand game • Understand the HAU’s life cycle Findings: • Cards can not be double sided, affords opportunity for card memorization • Create a key rather than directions • Connection between elements needs clarification Insights: Solution; Draft 4 • Visual modifications to design of existing cards can pro- mote HIV/AIDS education/awareness • Approaching HIV/AIDS is so difficult, so nothing totally new should be introduced into the culture HAU is a two-step communication system to initiate parent/child • Only core concepts/images need a pictogram, the rest of relationships and encourage discussions. Using the ubiquitous the conversation will follow challenges of physical and mental maturation as a source of • Promoting a conversation is key to HIV/AIDS education bonding rather than deference will facilitate discussing difficult topics like HIV/AIDS. The gifting of HAU is a social contract Next step: between parent and child promising an open, honest, and • Product design loving relationship. The elements of HAU ensure comfortable communication for both parent and child by supplying a portal (HAU pendant) and medium (HAU game) for communication. The pendant encourages approaching topics and the game shows you “HAU” to talk about them.
  • 148. prototyping expert feedback; dr. mehret mandefro Hi Dr. M., I love it Arielle. I am assuming you the name is referencing Marcel Mauss's ideas of gift exchange. He is one of my favorite all times. I'm sorry I have been out of touch...I can assure you I have been working so hard on my thesis (that will hopefully be a great tool My only feedback would be to encourage to think about the for you!). Would you mind giving me your feedback on an abstract "pendant" not only as a portal but as a very visible reminder of the of my problem, context and solution? I have pasted it below, any things we do not say. Pendants are forms of adoration and jewelry feedback would be so helpful, but I most certainly understand if you functionally acts as a display of beauty. This act is diametrically are too busy. Thanks so much! opposed to the nature of the conversations and words we do not speak which often have to do with shame, etc. Am I making sense? Warmly, Arielle Scoblionko Otherwise, it's great. Feel free to call me if you want to discuss further. P.S. HAU is pronounced "how" ... Thanks for doing this. SOLUTION: You rock! HAU is a two-step communication system to initiate parent/child relation- ships and encourage discussions...The pendant encourages approaching Dr. M topics and the game shows you “HAU” to talk about them. 148
  • 149. aids in ethiopia: born without rights of course! i will be editing my film in nyc and meeting with some of Your e-mail was just the extra push of motivation that I needed to the truthaids artisans i am working with so i just have to figure out finish out strong. When I began my project I was (and continue to when the studio times are booked. i can't wait to see your product. be) inspired by you, and to finish it out working with you is an in- i am such a fan of gift exchange and reference it in the book i am credible feeling. You are an amazing source of hope and inspiration writing. i can't tell you how crazy it was to see mauss come at me to so many people; my only hope is to impact people the way you through you :-) you are really doing a great job with this stuff. it's a have :) joy to be working with you. It's funny how things have played out...I remember when you said dr.m to me, "People tell me they would wear me around my neck if they could." Hopefully, HAU will give them that opportunity. Let me know about your NY schedule... Arielle
  • 150. intervention overview; problem The current disconnect between parent and child is one of the main problems encouraging the continuous spread of HIV/AIDS. This familial detachment puts an enormous strain on parent/child communication and consequentially deprives children of life saving knowledge. Globally, parents struggle with how and when to teach their children about HIV/AIDS, and other similar topics such as sex. A portal of communication is essential to the successful development of honest and comfortable relationships within families. 49. 49. 150
  • 151. aids in ethiopia: born without rights 53. 54. 50. 51. 52. 54. 55.
  • 152. intervention overview; context O ver 90% of the HIV child population is concentrated in Sub-Saharan Africa, with Ethiopia home to the most children affected by HIV/AIDS. Despite the risk of mother-to-child-transmission (MTCT), motherhood, which is traditionally signified through breast feeding, establishes a woman’s roles and rights in many Ethiopian communities. Therefore, many HIV-positive women continue to bare children and breast feed without knowing how to teach and protect their child from HIV (weather or not contraction has occurred). HAU is intended to create a portal that encourages the development of parent/child relationships in order to allow open communication, which will aid in the prevention of HIV/AIDS transmission. 152
  • 153. aids in ethiopia: born without rights 24. Zway, Ethiopia: Therapeutic Feeding Center. 61. 24. Zway, Ethiopia: Therapeutic Feeding Center. 107. Niger 9. Starving African children. 222. 30. African Child, Uganda.
  • 154. intervention supporting research; gift “To except is to commit oneself....A gift is received ‘with burden Marcel Mausse (1872-1950) was a French sociologist attached’. One does more famous for his classic text The Gift in which he studied archaic than derive benefit from a societies in order to understand exchange. Mauss questions has accepted the innate power of a gift that obliges reciprocation. a challenge” (5: 31-41). The source of power, he argues, is rooted in the “reality” that the gift is a total social fact; they are imbued with “spiritual mechanisms...that oblige a person to reciprocate the present that has been received,” binding the giver and recipient in a social contract (5: 7). 177. Woman from the Tsemay tribe. Ethiopia. “Hau of the toanga the A tie occurring through spiritual power of things, is one between your gift,...compels you... souls, because the thing The...hau...possesses a kind of individuality” (5: 11-12). itself posses a soul . (5: 12) 177. 177. Lady from the Arabore tribe. Ethiopia 2005. 154
  • 155. aids in ethiopia: born without rights “What imposes obligation in the present received “The recipients of one day and exchanged, is the fact that the thing received is not become the givers [will always] possess something of the next” (5: 22). of [the giver” (5: 12). 177. 177. An “irrevocable contract “In reality, [ gifts] merely act [is created]...Through the as representatives thing passed on, even it if is of the spirits, because these consumable, the alliance that exchanges and contracts has been contracted is not only bear people and no momentary phenomenon, things along in their wake, but and the contracting parties are deemed to be in a state of also the sacred beings... perpetual dependence that are associated with towards one another” (5: 63-64). them” (5: 15-16). 177. Surma Mother and her boy. Ethiopia. 177. Two sisters in the Lower Omo Valley, Ethiopia .
  • 156. intervention supporting research; game “Many card games encourage awareness of mathematics and of the psychology of opponents” (18). 223. Jean Piaget is a famous psychologist who divided play “In play, children expand into four stages of cognitigive deveopment: sensorimotor their understanding (birth-2 years), pre-operational (2-7 years), concrete of themselves and others, operational (7-11 years), and formal operational (11 their knowledge of the years and up). During the senorimotor stage, children understand “object permanance,” the realization that things exist even when physical world, and their not present. During the pre-operational stage, children learn to ability to communicate represent objets through pictures and words. During the concrete with peers and adults” (18). operational stage, children can think logically about objects and events, and during the formal operational stage can think logically about abstract problems and events (17). 177. Children playing at school, Ethiopia 177. Children playing at school, Ethiopia 156
  • 157. aids in ethiopia: born without rights “[Ethiopian children] play games with the [other] children of their neighborhood. These games relieve some of their stress, and it is also a way in which children express their fears” (20). 224. “Play amongst the young is most frequent during periods of dramatically expanding knowledge of self, the physical and social world, and systems of communication. It helps teach object manipulation, value judgment, role-models, and social 224. Erbore boys playing. awareness” (19). 177. Children playing at school, Ethiopia 157. Ethiopia boys playing.
  • 158. intervention supporting research; adornment “Historically people have adorned themselves to “Pendants are forms of show their status, to ward off evil spirits, to bring them adoration and jewelry ‘good luck’ and to identify themselves as belonging functionally acts as to…[a] tribe, group or culture. Body adornment is a a display of beauty” (55). means to communicate social position or to show important stages in life, rank or ‘man hood’. Bodily adornment can be broken into two groups, those that permanently mark the body and those which can be removed, temporary adornment” (51). 157. An Erbore (or Arbore, both are ok) boy with a daate bowl on his head Certain types of adornment, “can transform a person into a spirit, a work of art, another gender or even a map of a sacred place. It can emphasize visual appeal, express allegiance or provide a protective and 157. Nyangatom Tribe, Ethiopia. “ The girls wear 157. Korcho village, Karo tribe, South Ethiopia, in empowering coating” (51). 157. Mursi Tribe Woman. Ethiopia. 157. Afar Girl tons of necklaces. The more she has, the better it front of Omo river. is.” 158
  • 159. aids in ethiopia: born without rights “In Africa there is no “Certain objects have mystical or spiritual meaning like the gender boundary ability to ward off evil or illness. in the realm of beads. Wealth and status are commonly Both men and women shown with displays of jewelry” (51). wear beads for a variety of reasons-including adornment and status....Colours and patterns convey messages, in a complex litany of coded meanings” (54). 157. Mursi Woman. Ethiopia “The jewelry of Africa is not just ornamental. For each group, rituals and religion play a major part in the adornment of jewelry. Each piece is represented 157. Ethiopia and worn for a particular “Adornment remains the primary reason, ranging from aesthetics use of beads throughout [Africa]. to identifying marks of a As an item of beauty and society or group” (54). craftsmanship, beads transfer their essence to the wearer” (54). 157. Banna Warrior, Ethiopia. 157. Baby from as Umm Bororo tribe 157. Hamar Man in Turmi
  • 160. intervention supporting research; methods of change “Because many women have limited control over their contraceptive use, integrating sexual lives and gender issues into reproductive health and HIV/AIDS program interventions becomes critical. Active male 224. African AIDS orphans. “Ethiopian society is highly structured, and great deference involvement in reproductive and family care- giving enhances responsible parenthood is paid to religious, political and civil leaders, teachers, and other prominent community members... social and reduces gender based violence that affects change, bringing new messages into communities through women’s reproductive health and rights” (41:15). voices the people know and trust. For thousands of mothers and fathers, especially in remote areas... FGC as a problem linked to reproductive health and a woman’s right to take ownership and care of her own body.... Sound medical arguments against FGC, shared with women and men byrespected members of their communities, have proven effective in changing attitudes and behaviors” (41: 8). 26. Vineeth, 7 months old and HIV-positive, 225. cries at the Community Health Educa- tion Society orphanage in Madras, India. 160
  • 161. aids in ethiopia: born without rights “As with early marriage, great success has been achieved by teaching religious leaders about the medical and psychological consequences of FGC. Accurate knowledge of the details and implications of the practice is limited among men. After learning of the enormous danger, pain, and suffering caused by FGC, religious leaders generally become outspoken opponents and carry this message to their congregations” (41: 9). 41. 226. 30. “...materials, including “ saturation with workshops, conversation cue cards, radio messages, and debate, thought-provoking public theatre, and other behavior and videos, have been widely change communication materials. Such comprehensive public distributed throughout project education is informed by the understanding that deeply communities. Community entrenched attitudes and gender roles can only evolve after conversation a critical percentage of people in a community engage in the sessions stimulate men and discourse. These widespread messages resonate immediately with women to abandon harmful many powerful girls and women, and a great many thoughtful traditional practices and and responsive men also take on leadership roles in debating gender-based violence” (41: 11). and popularizing these new ideas” (41: 12). 13.
  • 162. intervention supporting research; educational & verbal impact In the fight against HIV/AIDS, it is not enough to deal only with the health consequences of the virus...HIV/AIDS is an economic problem. It’s 227. HIV positive children lie at the Community Health Education Society orphanage in Madras, India. also a gender problem... “Besa is the second oldest of five sisters orphaned in And when children lose their parents and must look after 1999 when both their parents died of AIDS... Despite the fact younger siblings, HIV/AIDS is an that her parents died from HIV/AIDS, Besa doesn’t refer to AIDS education problem” (55). by name. She’s not alone. Complex traditions and social customs among Ethiopia’s more than 70 ethnic groups often result in stigma, fear and denial, creating quite a challenge [for HIV/AIDS education]: How does one inform communities about HIV/AIDS prevention when people are hesitant even to say ‘HIV/AIDS’?” (55). 228. 229. 162
  • 163. aids in ethiopia: born without rights “People don’t want to talk about it,” says CARE (a humanitarian organization fighting global poverty) volunteer Alemayhu Afinie. “After burials, people know how the person died, but no one says it out loud. “Community leaders hope ...One of the goals of CARE’s that teenagers...will voluntary counseling and become role models for testing is to encourage the younger generation and that by sharing their people to talk about HIV/ experiences, they AIDS. “They may hesitate to will encourage the young mention HIV/AIDS,” she says, avoid the pitfalls that “but coming to be tested is a sign could lead to a life-shortening of behavior change” (55). illness” (13). 230. "It's way easier to tell someone who knows what HIV/AIDS is, so after when you tell them they understand better." -affected youth 231. 229. 232.
  • 164. intervention overview; hau HAU HAU is a two-step parent/child communication a two step communication system system to help initiate and discuss difficult topics including HIV/AIDS. The gifting of HAU is a social contract between parent and child promising an open, honest, and loving relationship facilitated by using the ubiquitous challenges of physical and mental maturation as a source of bonding rather than deference. The elements of HAU help ensure comfortable conversation for both parent and child by supplying a portal (HAU pendant) and medium (HAU game) for communication. The HAU pendant encourages approaching topics and the game shows you “HAU” to talk about them. 164
  • 165. aids in ethiopia; born without rights Riongo, Kenya, Nov. 3, 2006. U.S. Navy photo by Chief Petty Officer Eric A. Clement
  • 166. intervention hau; elements HAU Cards are based on a traditional international deck of playing cards. All methods of categorizations will remain constant, save for face design. Each face displays a unique pictographic design related to HIV/AIDS. A traditional international deck is composed of 52 cards categorized by rank, suit, and color. Standard decks contain two additional cards, designated jokers. The front (or “face”) of each card carries markings that distinguish it from the others cards in the deck. The back of each card is identical for all cards in any particular deck. Rank: • Indicated by numerals from 1 to 10 on • The numeral 1 is designated ace and marked A accordingly • Three court cards designated jack, queen, and king are notationally equivalent to 11, 12, and 12, respectively, though actually marked J, Q, and K. Suite: • Clubs, spades, hearts, and diamonds • Each suit is composed of 13 cards, each a different rank Color: • Black: spades and clubs • Red: hearts and diamonds Traditional International Playing Cards 166
  • 167. aids in ethiopia: born without rights HAU Pendant is specially designed for HAU and subtly integrates shapes and colors symbolic to the HIV/AIDS community. Characteristics: • Conducive to the cultures and tribes of Ethiopia • Design affords numerous methods of jewelry attachment • Inconspicuous, individual integration highlights desired emphasis • Manufactured using local Ethiopian materials Cultural Significance: • Only those familiar with HAU can identify the pendant, which decreases public stigma. • Repeated presence of pendant sparks community interest, promoting a “trend” that aids in HIV/AIDS prevention. • The pendant becomes a commonality that initiates peer relationships based on shared HIV/AIDS awareness. • HAU Pendant affords children an opportunity to identify others potentially affected/effected by HIV/AIDS without subjecting the child to embarrassment and stigma surrounding the virus (which currently barricades children in similar situations from finding peer support). Ethiopian Jewelry Bazaar, Harar, Ethiopia.
  • 168. intervention hau; description, modified deck of cards Prototype: HAU King: Front Prototype: HAU Queen: Back Prototype: HAU card back K Q HAU Playing Cards: HAU’s customized card deck is a medium to allow comfortable communication between parent and child. By integrating HIV/AIDS into everyday play, the child is always reminded of the expierences and conversations pioneered by HAU. The cards promote dialogue by inconspicuously bringing traditionally private matters K Q into the public realm. 168
  • 169. aids in ethiopia: born without rights Traditional Ethiopian Playing Cards Custom Playing Cards
  • 170. intervention hau; description, pendant Pendant: HAU pendant is a portal of communication to revitalize HIV/AIDS education. Traditionally, jewelry functionally acts as a display of beauty, which is diametrically opposed to the nature of words and conversations surrounding the topics HAU promotes. This tension iniates a cultural shit to allege previously dormant dialogue that endorsed HIV/AIDS’s thriving exisitance. Prototype, HAU Pendant Prototype, Incorporations of HAU Pendant 170
  • 171. aids in ethiopia: born without rights Woman wearing traditional Hamar Tribe jewelry, Ethiopia. Girl wearing traditional Karo tribe jewelry, Ethiopia.
  • 172. intervention hau; the system The Complete System: Together, the elements of HAU create a contractual gift between parent and child that impose constant metaphysical exchange. At all times, the child posseses a piece of the parent’s spiritual essence which creates a mutually binding obligation and an indestructable bond by virtue of its inherent power. HAU, as a system, posses “magical” power of its own that not only binds 1. Aishetu is born to a HIV- 2. At four years old Aishetu’s mother positive mother but, like her siblings, gives her a special gift, HAU. Together, parent and child by obligation, but also by honor. It is does not contract the virus. From they use HAU to create a unique infancy, Aishetu admires the necklaces necklace that Aishtu proudly wears. the nature of this bond that affords HAU the ability to her siblings wear. Aishetu’s mother, Shortly threeafter, Aishetu’s mother dies bring imperative dialogue to the surface. explains that one day Aishetu will wear of AIDS, leaving her older sister, Desta to jewelry of her own. care for her. 172
  • 173. aids in ethiopia: born without rights 3. Gabra uses HAU to help explain their mother’s death to Aishetu. Desta 4. At fifteen Aishtu marries and 5. Aishetu births a son and gifts him continues to teach Aishetu about HIV/AIDS with the help of HAU. As Aishetu continues to find comfort in her HAU, following her mother’s example. matures she finds comfort in her necklace, a gift from her mother, and is always necklace. The lessons learned from She uses HAU to teach her son about reminded of the lessons her sister taught her through HAU. HAU help Aishtu make difficult choices, HIV/AIDS, and the way it affected her and she is guided and comforted by the mother. She and her son bond over their necklace that makes her always feel shared adornment as he ages. Through accompanied by her mother and sister. this process, a tradition is born..
  • 174. intervention hau; the complete system, distribution Organizations, affiliated with but not limited to human rights and HIV/AIDS prevention, will distribute HAU and/or incorporate it into their programs. Africa, HIV-positive rally 174
  • 175. aids in ethiopia: born without rights Example organizations: Pathfinder International CARE UNICEF UNAIDS UNAIDS campaign, World AIDS day 2006
  • 176. intervention hau; future opportunities HAU will be working TruthAIDS to move forward with pilot testing and in hopes of eventual distribution. The founder of TruthAIDS, Dr. Mehret, has worked with Ethiopian communities in the area of HIV prevention. After further testing and final design development, HAU will look to extend implementation into Ethiopian communities through humanitarian based partnerships. 176
  • 177. aids in ethiopia: born without rights As HAU developes, versions of the system will be developed to fit the educational needs of communities internationally. Examples of a possible variations and/or line extensions: • new game development • a kit that provides users wtih materials to create a necklace, including HAU pendant • development of HAU to aid in other areas of health education such as STD’s, autism, and post traumatic stress disorder 234.
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