aids in ethiopia: born without rights
HAU a two step communication system
arielle scoblionko
introduction
navigation
project introduction; spring 2008
design development; course overview project topic exploration; brainstorm project brainstorm; brainstorm inspiration hiv/aids prevalence; demographics hiv/aids prevalence; africa hiv/aids prevalence; ethiopia problem overview; understanding hiv/aids
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project introduction; 2008-2009 school year
senior thesis; course overview, design development (spring 2008) review; inspiration project topic exploration; childhood project research; inspiration introduction; problem statement
20 22 24 26 28
the epidemic; hiv/aids hiv/aids; scientific overview scientific overview; hiv/aids victims hiv/aids victims; children child hiv/aids victims; physical and mental effects child hiv/aids victims; psychological and social effects child hiv/aids victims; economic and political effects child hiv/aids victims; global mortality effects effects on children; mother to child transmission mother to child transmission; breast feeding
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identifying the problem
aids in ethiopia:
born without rights
understanding the problem
understanding the larger context; social environment and development understanding the larger context; socialization understanding the larger context; childhood understanding the larger context; childhood in africa understanding the larger context; motherhood understanding the larger context; motherhood in africa understanding the larger context; breast feeding understanding the larger context; breast feeding in Africa breast feeding; prevalence breast feeding prevalence; femininity breast feeding and femininity; motherhood breast feeding and motherhood; cultural significance breast feeding and motherhood; common practices breast feeding practices; health breast feeding health; hiv/aids relationship child hiv/aids; in africa child hiv/aids: in ethiopia
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understanding the community
ethiopia; country overview ethiopia, cultural overview ethiopian culture; family planning ethiopian cultural roles; men ethiopian cultural roles; women ethiopian cultural; children meet the people; personas
84 86 88 90 92 94 96
introduction
navigation
current solutions
overview; critique; critique; critique; critique; critique; critique;
hiv/aids, global hiv/aids drug treatment and scientific advancements hiv/aids outreach, and organizations hiv/aids shelter hiv/aids, volunteer services hiv/aids, breast feeding alternatives hiv/aids, abstinence
98 100 102 104 106 108 110
expanded research
research opportunities; global needs inspiration; human rights inspiration; the big pictures diseases; malaria diseases; diarrhoeal diseases; chytridiomyosis diseases; simian immunodeficiency virus,feline immunodeficiency virus
112 114 116 118 120 122 124
opportunities; areas of intervention selected area of focus ; prevention inspiration; all of us the movie inspiration; dr. mehret mandefro, ethiopian-american hiv/aids specialist initial brainstorm; process expert feedback; dr. mehret mendefro solution; draft 1 expert feedback; dr. mehret mendefro and HIV-positive patients solution; draft 2 solution; draft 3 solution; draft 4 expert feedback; dr. mehret mendefro
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prototyping
aids in ethiopia:
born without rights
intervention
project resources
overview; problem overview; context supporting research; gift supporting research; game supporting research; adornment supporting research; methods of change supporting research; educational and verbal impact overview; hau hau; elements hau; description, modified deck of cards hau; description, pendant hau; the system hau; the complete s ystem, distribution hau; future opportunities
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bibliography images
178 180
project introduction; spring 2008
design development: course overview
T
1.
6
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.
aids in ethiopia;
born without rights
Design Development(spring 2008):
Identifying the Problem image inspired by “2.�
project introduction; spring 2008
project topic exploration; brainstorm
8
aids in ethiopia:
born without rights
project introduction; spring 2008
project brainstrom; brainstorm inspiration
10
aids in ethiopia:
born without rights
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
aids in ethiopia:
born without rights
6. AIDS orphan; South Africa
4. Cameroon Project, AIDS orphan
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
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
aids in ethiopia:
born without rights
South Africaâ&#x20AC;&#x2122;s Department of Health estimates that 18.3% of all African adults (15â&#x20AC;&#x201C;49 years) were living with HIV in 2006 (60:3).
8. Villagers in Masogo, Kenya attend a funeral for a suspected AIDS victim.
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
aids in ethiopia:
born without rights
Ethiopia’s
Of 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] traveled 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.”
project introduction; spring 2008
problem overview; understanding hiv/aids
HIV: HIV (Human Immonodeficiency Virus) is a retrovirus, and like all viruses replicates inside 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
18
11. HIV virus infecting cell; image by Jeff Johnson
aids in ethiopia;
born without rights
AIDS: HIV attacks the immune system, primarily CD4 T cells which organize the bodyâ&#x20AC;&#x2122;s overall 12. White blood cell infected with AIDS
23. AIDS viruses budding from a white blood cell's membrane: Image by Matthew Christopher
13. AIDS positive cell
immune system. After infecting a CD4 T cell (by penetrating the cellâ&#x20AC;&#x2122;s wall) the virus becomes part of 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).
project introduction; 2008-2009 school year
senior thesis: course overview
S
Photograph by Harold Davis
20
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.
aids in ethiopia:
born without rights
Senior Thesis (2008-2009):
Intervention/Innovation image inspired by (2).
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 endure the
consequences of their parentsâ&#x20AC;&#x2122;
actions.
Ghana - 3% of the population from 15-49 are currently infected with the AIDS virus 5.
Uganda - more than 940,000 children are orphaned due to the AIDS pandemic 5.
Zambia - 47% of the population is younger than 15 with only 7% receiving aid of any kind 5.
22
Ethiopia - this country of 70 million has more than 5 million orphans, their parents lost to famine, disease, war and AIDS 5.
5.
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 countries, up to
can be prevented. The primary
50% of infant
facing the HIV community is how to implement, in
contraction is
range
a of settings, the benefits of these
due to breast
feeding
challenge now
.
(63: 1)
18.
discoveries.
16. AIDS orphan, Uganda
project introduction; 2008-2009 school year
project topic exploration; childhood â&#x20AC;&#x153;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
culturally
and
organized in
the local environment of the
24
21.
childâ&#x20AC;?
.
(44:12-13)
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
project introduction; 2008-2009 school year
project research; inspiration
22.
“ Newsweek magazine announced, in its 1997 special issue on children, that breast
feeding
intelligence. 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 may boost a child’s
option, though experts on her behalf claimed a constitutional 26
right
to breast feed”
.
(64: 1)
aids in ethiopia:
born without rights
22.
project introduction; 2008-2009 school year
introduction; problem statement
C
24. Blumenfeld, David: Ethiopia, Tshay Tefera, 2 yrs
28
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.
aids in ethiopia:
born without rights
26. Johannesburg, South Africa. Child Living with HIV/AIDS at Nkosiâ&#x20AC;&#x2122;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.
identifying the problem
the epidemic; hiv/aids
â&#x20AC;&#x153;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 32.
30
HIV positive
childrenâ&#x20AC;?
.
(22)
aids in ethiopia:
born without rights
33. African child
31. HIV positive children, Africa
identifying the problem
hiv/aids; scientific overview
TRANSMISSION
ROUTES
MYTHS
HIV requires a host cell to stay alive and replicate. To replicate, the virus creates new virus particles inside a host cell and those particles carry the virus to new cells. Once infected, the T-helper cell turns into a HIV replicating cell. T-helper cells play a vital role in the body’s immune response. There are typically 1,000 T-cells per one millmeter of blood. HIV will slowly reduce this number until a person’s count drops below 200. When this happens, a person has progressed from HIV to AIDS.
HIV is found in body fluids and cannot live long outside the body. In order to transmit HIV, body fluid must be passed from an HIV positive person to an HIV negative person.
1. Once a person becomes infected with HIV he will die
3. HIV positive people engageing in sexual activity, do not need a condom
primary transmission routes:
1. Sexual contact (anal, vaginal, or oral)
35. Healthy Red Blood Cells
32
2. HIV can be cured
4. HIV only affects gay men and drug users
2. Sharing needles/syringes
5. People over 50 can’t get HIV
3. Mother to child: labor, delivery or breast feeding.
6. HIV is the same as AIDS
4. Blood transfusions
7. Once infected with HIV, a women can’t have children
aids in ethiopia:
1 HIV homes in on the CD4+ T cell 6 New envelope is assembled with HIV virus inserted
2 HIV RNA chain converts to DNA 1
6
2 Outer envelope is removed
2
3 HIV RNA chain converts to DNA 3
5
Diagram of HIV attacking CD4+ T cell and reproducing
born without rights
4 4 HIV DNA penetrates cell nucleus
5 DNA commands chromosomes inside nucleus to make more HIV
cell nucleus
CD4+ T Cell
7
7 HIV bursting from the cell
36.
identifying the problem
scientific overview; hiv/aids
68% new HIV 76%
In 2007, all
victims
â&#x20AC;&#x153;Every
of
6,800 persons
become infected with
infections and
of all
day, over
HIV and over
5,700 persons die
deaths
from
AIDS
AIDSâ&#x20AC;?
.
(66: 10)
due to occured in sub-Saharan
Africa
34
.
(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.
aids in ethiopia:
born without rights
Africa
In sub-Saharan , the estimated number of
children (under 18) orphaned by AIDS more than doubled
between 2000 and 2007. UNICEF estimates that by
2010 there will be 18.4
48. HIV-positive children
The WHO estimates that in 2015 AIDS
will cause in Africa
one
(62: 21)
.
in
million children
six deaths
in sub-Saharan 47. Cambodian HIV positive woman Mut Dem San, 29, lies on the floor of the health center
Africa
orphaned by AIDS
.
(62: 66)
identifying the problem
hiv/aids victims; children
â&#x20AC;&#x153;From the beginning of the
HIV pandemic through 2002,
four million children
under 15 years of age worldwide became infectedâ&#x20AC;? (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
HIV/AIDS. (66: 7)
36
500,000 children under the age of 15 died 38. Children at an Outpatient Treatment Center; Lerra village, southern Ethiopia. Photo: AFP/GETTY
from
AIDS or related causes in 2003 alone.
aids in ethiopia:
born without rights
Most
children
Ethiopian children ages
are infected with the virus
5 to 14 are called
of hopeâ&#x20AC;? because the
pregnancy, delivery or while breast feeding. About 50% of infants who get HIV from their during
mothers their
â&#x20AC;?windows
future is in their hands
die before
second birthday.
39. Women wait to get treatment for their malnourished children at an Outpatient Treatment Center
.
(67:16)
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.
identifying the problem
child hiv/aids victims; physical and mental effects
failure to thrive* fever * fatigue * rash * pheumocystis carinii pneumonia *
prone to infection * respriraatory manifestions * haematological manifestations
viral infection * lymphoid pulmonary lesion * delayed
mental development * sore throat
A malnourished boy is portrayed at a feeding centre in Damota Pulassa, southern Ethiopia.
38
25.
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
Eleanor Bentall/Tearfund, 13-month-old Abusch
* swollen lymph nodes *
social alienation
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.
identifying the problem
child hiv/aids victims; psychological and social effects
impact of HIV/AIDS on children is seen most dramatically in the rising numbers of children and adolescents orphaned by AIDS. The
UNICEF estimates that over
12.3% of all
15 million children,
children in sub-Saharan Africa, have been orphaned by AIDS, and the number is rising. Orphans who grow up â&#x20AC;&#x153;unloved, uncared for, and unsocialized [are] thought more likely to become criminals.â&#x20AC;? 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
aids in ethiopia:
born without rights
As young adults (ages 15-25) fall ill Africa is at risk of
The burden of
care increasingly
loosing an entire
generation.
“The
falls on the maternal grandmother
loss of
older people means skills and knowledge are not passed on - ‘institutionlal memory’ is lost”
(62: 83)
.
family
as the pandemic grows. Child & Grandmother. Property of VOA news.
“The burning question is what happens
when today’s
grandmothers die; AIDS means the next
of Fatuma Hillow and her grandmother Batula Guha Chronicle photo by Michael Macor
Property of Nkoni Cameroon Women Group.
Grandmother on Kanazi Island. Property of Helmi Maria, travel writer.
generation
grandmothers
will be
absent”
.
(62: 83)
identifying the problem
child hiv/aids victims; economic and political effects
HIV/AIDS greatly decreases worker
productivity which affects agricultural development and related leading to famine.
labor, consequentially
Malnutrition, resulting from famine, increases risk of transmission and 42
intensifies active viruses.
â&#x20AC;&#x153;Day in the Life of Africa.â&#x20AC;? Photograph by Pictopia.
aids in ethiopia:
born without rights
interest of
The increasing dependency
nation state, for
on government aid “adversely affects economic
healthy mothers
growth by depressing the national savings rate and
“It is in the the
to
supply the next
reducing future
generation of
resources
domestic available for investment” (62: 64).
workers and citizens” (64: 2). 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
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 infant to term” (62: 61). And, while
affected
Children by HIV/AIDS suffer from
can protect against diseases, they also decrease fertility rates (contributing to decreasing
poverty,
homelessness, discrimination, and early death. 44
condoms and abstinence
34.
populations) in many African communities where children
are essential to societal 50. Ethiopia: Three children’s bodies lie in a makeshift morgue at the South Oromia clinic.
functioning.
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, 51. Archived from “Bombs fall on Babylon.”
and social
welfare.
52. Relatives mourn over the the body of a one year old child who died of malnutrition. Darfur,
identifying the problem
effects on children; mother to child transmission
mother to child transmission MTCT of
HIV transmission from an
“The overall risk of
hiv-positive
HIV is substantially increased
mother
by maternal factors: high
to her child can
viral
occur during pregnancy,
low
labour, delivery or
46
cd4+ cell count, and
AIDS, by vaginal delivery or prematurity...” .
breast feeding.
53. Photograph by World Health Organization
load in plasma, a
“MTCT” (63: 1)
Photograph by Niall Crotty
An Akiye woman and her baby. August 19, 2008. Photo by Pernille Bærendtsen
aids in ethiopia:
born without rights
MTCT can be reduced from 15-25% The risk of
to under 2% by combining administration of antiretroviral prophylaxix during pregnancy and delivery, elective ceasarean
avoidance of breast feeding. section and
54.
55.
56.
57.
identifying the problem
mother to child transmission; breast feeding
replacement feeding is acceptable, feasible, â&#x20AC;&#x153;When
affordable, sustainable and safe, HIV infected mothers should avoid breast feeding completelyâ&#x20AC;?
58.
48
(63:1)
.
59.
aids in ethiopia:
born without rights
“The
impact
of HIV infection on
infant feeding
practices is a significant
public-health
issue, for two reasons:
malnutrition is
61.
an underlying cause of
“Where breast feeding is common and prolonged,
60% of child deaths,
transmission through
and underweight is the leading underlying cause of
breast-feeding may account for up to
half of HIV
disability and
infections in infants and 60.
young
children”
(63: 1)
.
62.
illness worldwide”
.
(63: 3)
understanding the problem
understanding the context; social environment and development
understand how children grow up “To
under
varied environmental
conditions, one must
“Patterns of
be willing to go to where
conditions already exist, to examine them
social organization
those
respect
behavior
34. Ethiopian mother and child
66. Hippo mother and child
67. Chinese mother and child
with and in detail, and to change one’s
which
assumptions in the face of
new observations”
(44: 9)
and such as mating patterns and emotional display rules,
vary across
species in
.
much of the animal
kingdom, vary
across populations in 63. Elephant mother and child
50
64. Menaksi temple, dreaming in mother’s arms
65. Gorilla mother and child
homo sapiens”
.
(44: 11)
aids in ethiopia:
born without rights
HIV and AIDS are
causing untold human
suffering. In some countries, the virus is
reversing
decades of developmental
progress. “While the
69. Photo by Kevin Fleming/CORBIS
epidemic’s evolution
has varied across regions, there is one common 67. Geoffrey Owino, the youngest of
Ethiopian mother & child. Sebastian Rich Photo.
Christine Kanga’s five children, is HIVpositive. Christina used to run a successful tailoring business but has not been able to work for a long time. Instead she gets up for short periods each day to teach her eldest son how to sew - an attempt to pass on vital skills to her family’s next generation. © World Food Program, Vanessa Vick.
denominator: HIV and
68.
AIDS are increasingly a disease of the
young and
most vulnerable, Sebastian Rich Photo.
69.
particularly girls” (65).
understanding the problem
understanding the larger context; socialization
71.
72.
73.
74.
Socialization is, â&#x20AC;&#x153;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 societyâ&#x20AC;?
76.
52
75.
77.
78.
.
(44: Foreword)
80.
79.
aids in ethiopia:
born without rights
â&#x20AC;&#x153;A population tends to share an environment,
symbol systems for
encoding it, and organizations and codes of conduct for adapting to it...Human
adaptation...is 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 childrenâ&#x20AC;? (44: 12). 84.
83.
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
aids in ethiopia:
born without rights
86.
85.
Africa, Photographer: Alastair McNaughton
85.
88.
87.
understanding the problem
understanding the larger context; childhood in africa
African
The model of childcare is referred to as the
pediatric model,
â&#x20AC;&#x153;because its primary concern is with the survival, health, and
physical growth of the infant... The
American [model] is pedagogical
the, â&#x20AC;&#x153; , because its primary concern is
behavioral development and its with the
89.
56
preparation for educational interactionsâ&#x20AC;? (44: 25).
90.
91.
aids in ethiopia:
born without rights
The
fundamental differences in
child rearing prohibit the implementation of medical, scientific, and social advancements
help a country economically, politically, and socially thrive. In order to improve the quality of life in third world nations, that
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.
understanding the problem
understanding the larger context; motherhood
94.
95.
99.
When functioning as the primary
caregiver, mothers of all
species and cultures â&#x20AC;&#x153;are
motivated by a
97
concern for the health and survival of their 58
infantâ&#x20AC;?
(44: 23)
.
96.
98.
aids in ethiopia:
born without rights
“Some experts
liken
sensual tie between mother and child to the exclusivity of the monogamous the
marriage bond” 100.
101.
102.
“The cultural variation in beliefs about pregnancy begins with beliefs about the causes of conception, which can express meanings and values central to the identity of a culture” (59: 1).
103.
104.
.
(64: 6)
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, and socio-cultural dimensions. Because the future of any given culture depends heavily on The experience of
women’s procreative
abilities, these abilities carry strong social significance.
Thus, every culture takes upon itself the regulation and management of women’s pregnancies 105.
60
(59: 1).
aids in ethiopia:
born without rights
barren woman childless man
â&#x20AC;&#x153;A
or
is [Africaâ&#x20AC;&#x2122;s] image of the worst possible
fate: an incomplete person who has
not attained the foothold
necessary for full adulthood
spiritual continuity
and . In some African socieites, such people are 108.
pitied and fearedâ&#x20AC;?
.
(44: 32)
understanding the problem
understanding the the larger context; breast feeding
Universally, a woman’s
“In the United States, maternal
breast feeding has
109.
biological purpose
long been advocated as a key to good mothering, womanly honor, and even to women’s citizenship...The notion of breast feeding as a mother’s obligation
is to reproduce. Gaining
respect as a mother
requires a commitment to breast
feeding because it personally and publicity solidifies a
to both her child and the larger social body extends from the colonial days, when nursing was a mother’s sacred
duty” (64: 9).
woman’s maternal
status.
Breast feeding, which is often considered the
112.
measure of the mother, physically and
114.
spiritually, literally and metaphorically, represents the transference 110.
62
111.
113.
of mother to child.
115.
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 of the twenty first century:
119.
“Mother’s bodies, female sexuality, and the act of feeding at
the relationship between breast and
the breast embodies anxieities addresing whether women’s
bodies are “pure” or “dangerous.” The questions surrounding
feeding
motherhood”
(64: 1)
.
117.
118.
breast feeding “provides a lens with which to sharpen our focus on the conflicts shaping and dividing women’s lives” (64: 1-2).
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 community. If a woman by the
does
not breast feed,
it may be
assumed
that she is
HIV-positive,
exposing her to the
59. Himba Mother and Child.
physical and emotional
64
virus
.
worth is measured in terms of her role as a mother and wife,â&#x20AC;? status of which are â&#x20AC;&#x153;A woman's
abuse associated with the
121. Young Himba Girl.
(70)
59. Young Himba Woman.
120.
reinforced through the act of breast feeding (45: 114).
aids in ethiopia:
born without rights
â&#x20AC;&#x153;The HIV [breast feeding] story is so powerful because it
Ethiopian women are expected to breast feed for it is safe, nutritious and ensures infant-mother
bonding, which is an important element of the native culture (71: 84).
literally and
metaphorically tells us which
mothers have
dangerous bodiesâ&#x20AC;?
122.
(64: 2)
.
HIMBA MOTHER AND CHILD 3 , Artist: Michael Sheridan. Redbubble.com
122.
understanding the problem
breast feeding; prevalence
126.
â&#x20AC;&#x153;Up to
94% of
world
123.
infants in the 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.
66
monthsâ&#x20AC;?
(63: 3)
.
125.
127.
aids in ethiopia:
born without rights
128.
“Nearly
131.
all infants in
Globally an estimated
41% of infants under four
developing countries are initially breast and
months of age and 25% under six months are exclusively breast fed;
fed,
most continue
in sub-Saharan Africa 23% of infants under six months of age are exclusively
until at least six months of age but
often into the
second year”
(63: 3)
. 129.
130.
breast fed” (63: 3).
understanding the problem
breast feeding prevalence; femininity
The Tempest, Giorgio Barbarelli da Castelfranco.
The 68
female
Birth of Venus, Sandro Botticelli
sex is globally recognized through the presence of breasts.
aids in ethiopia:
born without rights
Spirit Spouse.
The
Virgin and Child, Jean Fouquet.
Le Dejeuner Sur Lâ&#x20AC;&#x2122;Herbe, Edouard Manet.
breasts, across space and time, embody the essence of female sexuality.
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 amongst women, separating
133.
Motherhood
mothers from â&#x20AC;&#x153;otherâ&#x20AC;?
women deemed less moral.
is essential to the
Motherhood is a class making
creation of female
and marking duty (64: 11) .
identity.
The act of
motherhood physically
differentiates 131.
70
132.
women from men
.
(64: 52)
134.
aids in ethiopia:
born without rights
Woman who “see child
primary responsibility rearing as their
in life, and one that is
theirs alone
ultimatley ” is what sociologist Linda Blum
refers to as “exclusive
motherhood”
.
(64: 5-6)
135.
136.
93.
understanding the problem
breast feeding and motherhood; cultural significange
By Maitum Information Office, August 2007
“Breast feeding has long been advocated as a
mothering, womanly honor, and even to key to good
women’s citizenship... The notion of breast-feeding as
137. “Breast feeding baby in Ethiopia.”
According to sociologist Pam Carter, breast
feeding is
a“
a mother’s obligation to
body” (64: 2).
social body extends from the
conversation about femininity” and “obligations of the maternal body to the larger social
both her child and the larger
colonial days, when nursing was a mother’s sacred duty...when it was considered
138.
72
93.
a mother’s civic duty to the growing republic” (64: 19).
139.
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 to breast feeding.
143.
The “lens [on] breast
feeding reveals the collision of public and private
In the current era, breast feeding has become “the measure of motherhood. This issue [of motherhood] confounds the gender basis of
concerns with the maternal body” (64: 7).
citizenship 140.
and obligation to
[society]: women serve the nation through
141.
motherhood, and men, through the military” (64: 3).
93.
142.
understanding the problem
breast feedng and motherhood; common practices
144.
145
According to the World that â&#x20AC;&#x153;the
Health Organization
states
optimal feeding pattern for overall child
survival is exclusive breast feeding for the first six
months, and continued breast
two years and beyond, with complementary feeding from age six monthsâ&#x20AC;? . feeding for up to
(63: 5)
148.
74
146.
aids in ethiopia;
born without rights
In
Ethiopia,
approximately
96% of
infants are breast fed at 147.
some point.
148.
Breast feeding
“ can range from a six-week dose of
bonding
‘ ’ to an intense, several year relationship” (64: 3).
148.
149.
understanding the problem
breast feeding practices; health
Exclusive breast-feeding enables children to achieve optimal growth,
development and health. 76
Ethiopian children welcome an aid convoy. Photograph by Crispin Rodwell.
aids in ethiopia:
born without rights
Nursing is an
important part of overall maternal and child
health. It may reduce
a motherâ&#x20AC;&#x2122;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 to its prepregnant state.
151.
A lack of exclusive
Breast milk provides
breast feeding
optimum nutrition, stimulates psychosocial and neurological development, and strengthens a childâ&#x20AC;&#x2122;s immune system. Breast feeding may also heighten IQ, increase visual acuity, condition the body to better process fats and cholesterol, prevent obesity, and enhance facial, dental, and speech
development (9: 4) , (63: 3).
during the first six months of life contributes to over
one million avoidable child deaths each year . (1)
150.
151.
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 women are reluctant to get test for HIV due to the wide spread associated stigma. So, with unknown whether or not to
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 leaving her children as orphans. Photography by Andrew Petkun, sourced from AVERT.org.
78
152.
aids in ethiopia:
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Breast feeding by an
infected mother increases the risk of HIV infection by 5-20% to a total of 20-45%.
Mother to child transmission
155.
through breast-feeding is
cumulative; the longer a
child breast feeds, the greater the
through breast feeding. Breast
152.
feeding for two years or more
The recommended infant feeding policy is “problematic to implement in sub-Saharan Africa due to stigma associated
can double the overall risk of
MTCT of HIV to about 40%. Additionally, “recent maternal
infection with HIV may raise
with not breast feeding; non-exclusive breast-feeding
67. A child being spoon-fed by her mother at
! the Nutritional Rehabilitation Unit (NRU) in
the risk of transmission through breast feeding to twice that of a woman with earlier established
norms;” and low awareness of HIV status. If a woman does not breast feed, she may be
Nsanje district hospital, in Malawi in January 2006. This child is nine years old and severely underweight, she suffers from tuberculosis and HIV as well as malnutrition. She contracted HIV from her mother during pregnancy. Photograph by John Coy, sourced from AVERT. org.
assumed HIV-positive (11).
156.
risk of transmission
infection, [most likely due] to 157. Korcho village, Karo tribe, South Ethiopia.
the high viral load associated with recent infection” (63: 1-4).
understanding the problem
child hiv/aids; in africa
Sub-Saharan Africa is home to nearly
90% of all
children living with HIV.
158.
164.
159.
â&#x20AC;&#x153;It is hard to overemphasise
trauma and hardship that children affected the
by HIV and AIDS are forced to bear. The epidemic not only causes children to
160.
loose their parents or
guardians, but sometimes their
childhood as wellâ&#x20AC;? 80
(3)
.
160.
161.
162.
aids in ethiopia:
born without rights
In seven African countries, child mortality has
increased by 20 - 40% due to HIV/AIDS.
165.
166.
160.
168.
167.
If HIV/AIDS continues to thrive, â&#x20AC;&#x153;by 2020 there will be about
half the children under five there
there would have been in the absense of AIDSâ&#x20AC;? (62: 64). 159.
170. Aids orphans sleep during. South Africa. Photograph: Kim Ludbrook/EPA.
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
alone. That makes Ethiopia home to the largest population of HIV/AIDS affected children. orphaned by AIDS
163.
82
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
169. Orphan, Malawi.
171. “White dress, orphan day care.”
172. HIV-negative child with HIV-positive parents.
in the mid-1990s as the AIDS pandemic began leading to the death of millions of parents worldwide.”
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
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 Ethiopiaâ&#x20AC;&#x2122;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.
understanding the community
ethiopia; cultural overview
Ethiopia is the only country in Africa to have escaped Western
“Ethiopia has experienced extensive social and political
upheaval, recurrent drought and famine, war, and degradation of natural resources. High mortality, low life expectancy, high fertility, constant population
colonization.
movement, and poor
Yet remains one of the
world’s
this country. In 1985, Ethiopia embarked on a massive
poorest
decentralization effort that created nine regional states
countries. Ethiopia’s struggle with
infrastructure characterized
based on ethnic and national
poverty and
identities”
.
(42:1)
development
slow is inextricably tied to its
history of conflict,
“...largly [a] Muslim and Christian population, Ethiopians of different religions have traditionally lived in relative harmony,
drought, and environmental degradation” . recurrent
rural, agrarian (85%) culture, bound to the land and conservative values” . sharing a predominantly
(41: 4)
(41:4)
157.
86
173.
aids in ethiopia:
born without rights
â&#x20AC;&#x153;The African family is
Elders in Ethiopia are highly
respected and are
not a private haven of
responsible for settling disputes within their
consumption and informal
community. 157.
recreation separated 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 governanceâ&#x20AC;? (44:28). 176. Ethiopia's Omo region, a Hamar child peeks out from under her mother's shawl
177. BoazImages - Boys from the Surma tribe on the banks of the Kibish river in Ethiopia.
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 and high risk
unitended
pregnancies,
family planning can
178. Flamingos . Lake Abijata, Ethiopia.
lower the
Despite the importance of
instances of maternal and
transmission to family planning, very “few organizations
child injury, illness, HIV/AIDS transmission, and 178. Ethiopian children.
88
death
(42: iii)
integrating HIV/AIDS
have attempted to integrate any aspect of HIV/AIDS into their family planning programs” (42:8).
. 178. Children of the Arbore tribe, Ethiopia.
aids in ethiopia:
born without rights
“Geographic distribution plays an important role in
contraceptive use in
Ethiopia. Married urban
women are ‘nine times more likely to use a modern
178.
contraceptive methods
contraceptive method and seven
and access to family
times
planning services are inadequate in Ethiopia, particularly in rural areas, where total fertitlity
more likely to use a
traditional method’ than their rural counterparts.” This
geographic
and growth rates are
barrier contributes to the
markedly high (seven or eight children per family). In
difficulty surrounding contraceptive attainment and high fertility rates (42:2). 178. Members of the Arbore tribe, Ethiopia.
Knowledge of
2000, only
8% of women
in Ethiopia were using 178. Members of the Arbore tribe, Ethiopia.
contraceptives (42: 10) .
understanding the community
ethiopian cultural roles; men
Ethiopia remains one of
Men tend to marry younger girls, often a decade their
traditional societies, exemplifying Africaâ&#x20AC;&#x2122;s most
junior, making HIV/AIDS a transgenerational epidemic.
male superiority.
177.
Men are considered superior to their wives and have more
opportunities for 177.
90
educational expansion and employment (43).
177.
177.
aids in ethiopia:
born without rights
In Ethiopia, men
177.
177.
and women have clearly
defined roles. Traditionally men are responsible for providing for the family and for dealing with family contact outside the home. The traditional view was men neither cook nor shop because
177.
Marriage typically
â&#x20AC;&#x153;
gives the husband and his kin
wife- that is, over her
housework tends to
labor and/or the children
be womenâ&#x20AC;&#x2122;s job. This view continues to be held in many
areas of the country (43).
rights over the
she bears - in exchange for a
bride wealthâ&#x20AC;? (44:29). 177.
177.
understanding the community
ethiopian cultural roles; women
Women are responsible for domestic work and looking after the
children
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
civil 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” . the
(45: 114 )
179. “Hamar girl near Turmi - Ethiopia.”
92
179. Woman from Kono tribe, Ethiopia
.
(45: 114 )
179. Ethiopia Harar woman.
aids in ethiopia:
born without rights
Women’s inferiority is complicated by social and economic patterns, deeply
rooted in tradition, that 179. Girl from the Hamar tribe, Ethiopia
place powerful constraints on
179. “Surma woman - near Kibish - South west Ethiopia.”
Culturally based abuses include:
womens’ rights.
Female Genital
Cutting (FGC), early and forced marriage and childbearing,
When a woman’s husband
rape, wife inheritance, and domestic violence. “More than 74% of Ethiopian
women have undergone FGC.
dies she is often forced
An
to
uncircumcised woman is thought to be promiscuous
179. “Hamar girl near Turmi.”
and a threat to the family. Many believe that it is a religious obligation, while others believe that it protects a woman’s virginity and is medically beneficial. Traditionally, women perform the procedure with crude, unsterilized knives or razors, putting girls at risk of infection or contracting HIV” (41:6-7).
marry his brother.
“Today, this practice is feeding the HIV/AIDS epidemic, when
widows lose their husbands to the virus and carry it to 157. “Ethiopia Lafforgue.”
same as personas
the next marriage” (41:7).
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.
â&#x20AC;&#x153;Access to basic and quality education and educational materials in Ethiopia is
social, and spiritual goals of parents. Children are relied on to preform many of
generally low. This affects the cognitive development of the child in the early years of life and beyond. Female
the labor intensive, every day tasks, to the benefit of the family. In adulthood,
children
are expected to provide their aging
parents
with security and protection (44: 31). 94
enrollment/attendance
compared to male is lowâ&#x20AC;? (2). 37.
aids in ethiopia:
born without rights
girls are responsible for caring for younger siblings, helping in food preparation, and hauling water and fetching firewood .
Parents are stricter with
As soon as they are able,
their daughters than their sons; often parents give more freedom to males than females (43).
(41:5)
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.
A girl’s
daughter is an embarrassment
lives”
(41:5)
.
value stemps from the expectation that she will
establish kinship bonds through marriage to another
to her family. “Low status characterizes virtually every aspect of girls’
182.
29. Photographer: J. Rosenkranze; Ethiopia.
family, bolstering the community (41:5). 181.
status of her family within the
understanding the community
meet the people; personas
Photograph by Michael Clancy
157.
7 months after conception Mother, 16 years Died of AIDS with child in womb HIV-positive husband 2 children, 1 HIV-positive
2 years HIV-positive 2 older siblings, both HIV-negative AIDS-positive mother HIV-positive father
Unknown
96
Assefa
157.
157.
157.
5 years HIV-positive 3 older siblings, two are HIV-positive Mother died of AIDS Father died of AIDS
6 years HIV-negative Oldest of 3 children, 1 is HIV-positive HIV-positive mother Father died of AIDS
12 years Virgin, assumed HIV-negative Engaged Status of fiance is unknown No children
Makeda
Kassa
Hagos
aids in ethiopia:
born without rights
157.
157.
19 years HIV-positive 2 months pregnant HIV-positive husband 1 HIV-negative child
16 years Status unknown 4 months pregnant Husbandâ&#x20AC;&#x2122;s status unknown No children
Dahnay
Abrihet
157.
157.
157.
20 years AIDS-positive HIV-positive husband 3 children, 1 HIV-positive
21 years HIV-positive HIV-positive wife 2 children, 1 AIDS-positive
40 years HIV-negative HIV-negative husband 8 children, 2 HIV-positive, 2 lost to AIDS Raising 4 grandchildren, 1 HIV-positive
Tenagne
Bekele
Berhanu
current solutions
overview; hiv/aids, global
United Nationâ&#x20AC;&#x2122;s approach to preventing mother to child transmission: 98
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 HIVinfected women to their infants” (46: 9).
4.
183.
“Provision of care, treatment and support to HIV-infected women, and their infants and families” (46: 9).
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 decrease rate of infection in breast fed infants (assessed at 2-3 months of age) to 10%; with two or more drugs, the transmission rate is reduced to 7% (46: 9) • Drugs are methods of treatment, not prevention
• Access to health care and treatment is limited and expensive, especially in developing countries • Infants are at risk for entire duration of breast feeding
• Virus detection slows down the spread
• Peripartum antiretroviral prophylaxis does not prevent transmission through breast-feeding (46: 3)
• Leads to improved care and deeper understanding of HIV and related viruses
• Tests are not always accurate and have specific guidelines and time frames that can be difficult to abide by
• Without antiretovial treatment, 60-75% of children with HIV die before the age of 5. With treatment, this figure can be reduced to about 20%. (47)
• Scientific advancements are experimental and risky, long term consequences on self and others is undetermined.
100
aids in ethiopia:
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184. “Vaccine Inniative”
185. Antiretroviral drugs
A caregiver pours medicine into a dosing cup. 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
186. A failed HIV vaccine
project overview
critique; hiv/aids,outreach and organizations
Success:
Failure:
• Uses benefits of a global community to help a specific area
• Never enough funding or resources
• Increased funds and awareness for HIV/AIDS research, treatment, and prevention • Strengthens bonds between communities world wide • Offers a chance for people to contribute through a range of elements (i.e. funding, time, medical care, etc.) • “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
• Abundence of organizations speads resources over a larger area, which doesn’t allow for goal maximization • Lack personal connections between volunteers/financial donors and victims (People tend to be less inclined to give when the effects of their efforts are out of sight) • Te more organizations present, the less any one person feel it is his or her responsiblity to help (Schwartz & Gottlieb, 1980).
aids in ethiopia:
born without rights
UNICEF is an advocacy organization focused on protecting children’s human rights.
Doctors Without Borders is an independent international medical organization that delivers emergency aid to people in need.
Self-help Assistance Program aims to create a better, more efficient, less costly approach to development work.
“UNAIDS, the Joint United Nations Programme on HIV/AIDS, is an innovative joint venture of the United Nations family, bringing together the efforts and resources of ten UN system organizations in the AIDS response to help the world prevent new HIV infections, care for people living with HIV, and mitigate the impact of the epidemic” (4).
AVERT is an international HIV and AIDS charity based in the UK, working to AVERT HIV and AIDS worldwide. Their goal is to “inform people, help people to protect themselves, and ultimately, to save people's lives” (3).
current solutions
critique; hiv/aids, shelter
Success:
Failure:
• Those widowed by AIDS and forced to leave their communities have a safe refuge
• Shelters are often too difficult to get to; if a means of 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, have a secure home • Patients receive medical care and emotional support • Schooling and skills training can be provided, which allows residents to maintain hope and life
104
• Victims of the virus must risk exposing their status upon leaving, risk physical and emotional abuse from their community and/or family • Obtaining funding to adequately house and support people in need is extremely difficult
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 who are HIV Positive or have AIDS.
HIV positive. There goal is to, transform, “AIDS orphans from hopeless, suffering victims into productive members of their community.”
current solutions
critique; hiv/aids, volunteer services
Success:
Failure:
• The elderly and disabled who have been affected by HIV/AIDS are provided with care
• Finding steady volunteers who can physically, emotionally, financially, and willingly give up time is challenging.
• Provides support network for those affected by the virus • Can offer social activities which strengthens the emotional well being patients • “...infant feeding counseling done on a regular basis was very beneficial in promoting healthy feeding methods” (47).
106
• Volunteers can generally only access areas that have somewhat successfully modernized; rural villages with little or no communication to major cities are left out of touch.
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
current solutions
critique; hiv/aids, breast feeding alternatives
Success:
Failure:
• Mothers with HIV are advised not to breast feed whenever the use of a breast milk substitute is possible
• Breast feeding substitutes are not globally acceptable, feasible, affordable, sustainable and/or safe
• When breast feeding alternatives are acceptable, feasible, affordable, sustainable and safe, the risk of MTCT is reduced by feeding substitutes
• Breast milk provides health benefits that alternatives don’t
• Breast feeding alternatives have different chemical properties than breast milk
• Breast feeding alternatives in some communities is equivalent to exposing HIV status (47)
• A mother’s nipples may become sore or cracked, in which case breast feeding alternatives may be necessary
• “Many women breast feed because it is something that “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
• Many women lack access to knowledge and resources
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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. Š Cross-Cultural Solutions
188.
current solutions
critique; hiv/aid, abstinence
Success:
Failure:
• Ultimately, abstinence is the most affective way of preventing MTCT.
• In certain cultures, such as Ethiopia, women’s usefulness 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
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189. Mother and child.
193. Mother and a child, Cambodiaâ&#x20AC;&#x2122;s Ratanakiri province.
192. Pregnant Himba wife, Ethiopia.
194. Teen Mother.
189.Mother and child.
190.
191. Mother and child.
expanded reserach
research opportunities; global needs
â&#x20AC;&#x153;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 feedingâ&#x20AC;? 112
.
(46: 19)
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â&#x20AC;&#x153;Given the
risk from breast feeding, reduction of
transmission is one of the most pressing public health challenges confronting such HIV
researchers, health care professionals, health policy-makers and HIV-infected women in many parts of the world,
177.
67. Photograph by John Coy
especially in developing countries. Efforts to prevent transmission by breast feeding should take into account the need to promote breast 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 A two-year child clutches to his grandmother. Photograph property of International Medical Corps.
195.
or of unknown HIV-infection statusâ&#x20AC;? (46: 3-4).
expanded research
inspiration; human rights
â&#x20AC;&#x153;HIV positive children should enjoy
full rights for treatment and schooling, just like
114
other children.â&#x20AC;?
Valeria 2. Valeria, HIV positive mother and activist (Ukraine)
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United Nations Declaration of Human Rights
United Nations Declaration of Human Rights for Children
Article 1:
Principle 2:
“All human beings are born free and equal in dignity and rights.”
“Everyone has the right to life, liberty and security of person.“
“The child shall enjoy the benefits of social security. He shall be entitled to grow and develop in health; to this end, special care and 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 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 health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.”
“The child who is physically, mentally or socially handicapped shall be given the special treatment, education and care required by his particular condition.”
(1)
Article 3:
(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.”
(2)
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.
116
196. Fetus in womb.
197. Dandelions.
Moss and Mushrooms. Photo by Rick Scadlock. November 2007.
198. Colored Muschrooms
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199. Dividing Cancer Cells
93. Human Fibroblasts Infected with Adenovirus
Diseases that spread uncontrolably:
200. Hantavirus
201. Human colon cancer cells in culture
Malaria Diarroheal Disease Chytridiomycosis
expanded research
diseases; malaria
Malaria:
Perspective:
“Malaria is caused by a parasite called Plasmodium, which is transmitted via the bites of infected mosquitoes. In the human body, the parasites multiply in the liver, and then infect red blood cells” (1).
Malaria is a life-threatening disease A child dies of malaria every 30 seconds. There were 247 million cases of malaria in 2006, causing nearly one million deaths, mostly among African children. Approximately half of the world's population is at risk of malaria, particularly those living in lower-income countries.
202. Malaria blood cell
203.
118
Demographics: Occurs in warm, humid climates (like Sub-Saharan Africa) where pools of water breed Anopheles mosquitoes. “Non-immune 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).
“Each year 350–500 million cases of malaria occur worldwide, and over one million people die, most of them young children in subSaharan Africa” (5). “In areas of Africa with high malaria transmission, an estimated 990,000 people died of malaria in 1995 – over 2700 deaths per day, or 2 deaths per minute” (5).
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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 therapies (ACTs). However, the growing potential for parasite resistance to these medicines is undermining malaria control efforts 204.
expanded research
diseases, diarrhoeal
Diarrhoeal:
Perspective:
“Diarrhoeal disease is caused by ingesting certain bacteria, viruses or parasites that may be spread by water, food, utensils, hands, and flies. Most diarrhoea related deaths in children are due to dehydration, the loss of large quantities of water and electrolytes (sodium, potassium and bicarbonate) from the body in liquid stool” (7).
“Diarrhoea occurs world-wide and causes 4% of all deaths and 5% of health loss to disability. It is most commonly caused by gastrointestinal infections which kill around 2.2 million people globally each year, mostly children in developing countries” (1).
Demographics: “The infectious agents that cause diarrhoea are present or are sporadically 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
“Each year there are approximately 4 billion cases of diarrhoea worldwide” (1). “World-wide around 1.1 billion people lack access to improved water sources and 2.4 billion have no basic sanitation. Diarrhoea due to infection is widespread throughout the developing world. In Southeast Asia and Africa, diarrhoea is responsible for as much as 8.5% and 7.7% of all deaths respectively” (1).
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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.
expanded research
diseases; chytridiomycosis
Chytridiomycosis:
Perspective:
Caused by the chytrid fungus, Batrachochytrium dendrobatidis which is probably “transferred by direct contact between frogs and tadpoles, or through exposure to infected water” (10).
“One of the biggest threats facing amphibian species and population survival worldwide is the disease chytridiomycosis, caused by the chytrid fungus, Batrachochytrium dendrobatidis” (15).
The “fungus attacks parts of [frogs] skin that have keratin in them. Since frogs use their skin in respiration, this makes it difficult for the frog to breathe. The fungus also damages the nervous system, affecting the frog’s behavior” (10).
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)
208.
122
“Batrachochytrium has been found in every continent that has amphibians, except Asia” (15).
“Recent declines in amphibian diversity and abundance have contributed significantly to the global loss of biodiversity” (15).
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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)
209.
“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).
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 acquired immunodeficiency syndrome (AlDS)-like illnesses in susceptible macaque monkeys” (8).
It is theorized that people hunting chimpanzees first contracted the virus - and that cases were first seen in Kinshasa, in the Democratic Republic of Congo.
HIV-1 and HIV-2, “originate in simian (monkey) immunodeficiency viruses (SIV) found in Africa. The source of HIV-1 was in chimpanzees 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
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Overview of FIV:
Transmission:
Feline immunodeficiency virus (FIV) is a lentivirus (slow virus) that causes infectious disease in domestic cats and cheetahs. It is similar to HIV in humans (16).
Not transmitted through prolonged close contact Transmission through bit wounds and sexual contact (16)
Symptoms:
Transmission in utero or through the motherâ&#x20AC;&#x2122;s milk is rare (16)
Eventually fatal, though it may not produce symptoms 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.
prototyping
opportunities; areas of intervention
1. General Health
2. Child Care
3. Fear
4. Child Caretaker
5. Social
212.
212.
212.
212.
212.
126
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6. Political
212.
7. Economic
212.
8. HIV Prevention
9. HIV Transmission 10. HIV Treatment
212.
212.
212.
prototyping
selected area of focus; prevention
D
157. Karo Tribe Children, Korcho Village, Ethiopia.
128
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.
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157. Korcho Village Chidren, Ethiopia.
157. Korcho Village Child, Ethiopia.
157. Children near Turmi, South Ethiopia.
prototyping
inspiration; all of us the movie
130
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“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.”
prototyping
inspiration; dr. mehret mandefro, ethiopian-american hiv/aids specialist
Photo by Heart and Soul Magazine
132
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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 â&#x20AC;&#x153;actively engag[ing] people in
dialogue that teaches about societal
determinants of health...[in order to] create novel preventative health
media/film as a medium of ethnography to teach about health. Her solutionsâ&#x20AC;?
(12).
Dr. Mandefro is advancing digital
work is featured in the documentary entitled All working on a new film entitled
of Us, and she is currently
David the Piano Player.
prototyping
initial brainstorm; process
134
aids in ethiopia:
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
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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 don’t want to talk to they say, ‘It’s
“Love is revolutionary.
sex
my kids about [and the repercussions], I just
We often constrain it to very narrow dimensions
don’t know how”
and separate it from our
12.
work. However, when individuals integrate it in all they do, the world
“HIV is an internal
identity”
changes” (53).
12.
136
.
(52)
12.
.
(52)
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“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”
boundaries. My work is
.
(52)
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, 214.
young and old need each
other to prevent making the mistakes of the past and learning how to map a new future” (53).
prototyping
solution; draft 1
138
aids in ethiopia:
Activity brief:
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• 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 commonly spoken out loud in public • Pictures used to communicate messages that are uncomfortable to speak about publicly • Users uncovered an innate objective: create a message that understandable to others
Next step:
• Create directions that bare burden of “deciding” to topic of conversation. Affords opportunity to join adornment and game
Solution; Draft 1 EDULIFE is a two-step system that encourages HIV/AIDS education and the development of parent/child relationships. At a young age the child is given EDULIFE necklace, which bares the burden of approaching difficult topics life HIV/AIDS. The necklace represents a promise of honest and love from parent to child, and acknowledges the challenges of growing up that everyone must face. When the child is of age, EDULIFE game is revealed and works in conjunction with EDULIFE necklace to ensure comfortable communication for both parent and child. EDULIFE necklace works in concert with EDULIFE game, acting as a constant reminder of everything the child learns through EDULIFE game.
prototyping
expert feedback; dr. mehret mendefro and hiv-positive patients
know better you do better.” -Tardrea Johnson, “If you
HIV-positive mother, (50)
214. Pediatric Clinic and Nutrition Program. Kandal, Cambodia
tell my son that I am HIV-positive, I didn’t know how. I asked him what he knew about HIV/ “I wanted to
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 him how he would feel if he knew someone that was
215.
“How do you
HIV-positive
He said ‘If I know someone close to me has HIV, I will want
across boundaries?”
to know more.’
Then I told him I was HIV-positive and he wanted to learn more.” - Tardrea Johnson, HIV-positive mother describing HIV disclosure to her 14 year old son, 140
(50)
talk
30. Ugandan Child, Bwindi.
- Dr. Mehret,
(50) 216.
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“I didn’t tell anyone that I was HIV-positive for
Men don’t have as many
“
[supportive] resources.” - HIV-positive person, (50)
a long time. I didn’t know how to. The first person 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
don’t have AIDS, I have HIV.
217.
To what extent do you want
I am not HIV; I am not AIDS. So I don’t Second of all,
HIV to define you? 67.
want to be identified 218.
that way.” - HIV-positive person, (50)
prototyping
solution; draft 2
142
aids in ethiopia:
Activity brief:
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• 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
Insights:
• Visuals help to comfortably communicate private matters in the public realm • Images provoke, not replace, verbal conversation
Next step:
• Explore how to use necklace and game as conversation initiators
Solution; Draft 2
HAU (translated by anthropologist Marcel Mauss as the spiritual power of a gift) is a two-step system that encourages HIV/AIDS education and the development of parent/child relationships. At a young age the child is given HAU necklace, which bares the burden of approaching difficult topics like HIV/AIDS. The gifting of HAU represents a form of social contract intended to embody a promise of honesty and love from parent to child. When the child is of age, HAU game is revealed and works in conjunction with 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 deference. The two elements of HAU work in concert, reinforcing the meanings attached to each element.
prototyping
solution; draft 3
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aids in ethiopia:
Activity brief:
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• 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” • Further categorization and structure is necessary to relieve user anxiety associated with relevant topics • Images visually represent what is uncomfortable to communicate verbally • Necklace serves a reminder of game interactions
Next step:
• Examine how to ensure adornment as a portal of communication and gaming as a medium
Solution; Draft 3 HAU (translated by anthropologist Marcel Mauss as the spiritual power of a gift) is a two-step system, a pendant and modified deck of cards, which encourages HIV/AIDS education and the development of parent/child relationships. At a young age the child is given HAU. The gifting of HAU represents a form of social contract intended to embody a promise of honesty and love. The elements of HAU ensure comfortable communication for both parent and child by supplying a portal (HAU pendant) and medium (HAU game) for communicating about difficult topics, like HIV/AIDS. The pendant encourages approaching topics and the game shows you “HAU” to talk about them.
project overview
solution; draft 4
122
aids in ethiopia:
Activity brief:
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• 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:
• Visual modifications to design of existing cards can promote HIV/AIDS education/awareness
• Approaching HIV/AIDS is so difficult, so nothing totally new should be introduced into the culture
• Only core concepts/images need a pictogram, the rest of the conversation will follow • Promoting a conversation is key to HIV/AIDS education
Next step: • Product design
Solution; Draft 4 HAU is a two-step communication system to initiate parent/child relationships and encourage discussions. Using the ubiquitous challenges of physical and mental maturation as a source of bonding rather than deference will facilitate discussing difficult topics like HIV/AIDS. The gifting of HAU is a social contract between parent and child promising an open, honest, and 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.
prototyping
expert feedback; dr. mehret mandefro
Hi Dr. M., 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 for you!). Would you mind giving me your feedback on an abstract of my problem, context and solution? I have pasted it below, any feedback would be so helpful, but I most certainly understand if you are too busy. Thanks so much! Warmly, Arielle Scoblionko P.S. HAU is pronounced "how" ... SOLUTION: HAU is a two-step communication system to initiate parent/child relationships and encourage discussions...The pendant encourages approaching topics and the game shows you â&#x20AC;&#x153;HAUâ&#x20AC;? to talk about them.
148
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. My only feedback would be to encourage to think about the "pendant" not only as a portal but as a very visible reminder of the things we do not say. Pendants are forms of adoration and jewelry functionally acts as a display of beauty. This act is diametrically 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? Otherwise, it's great. Feel free to call me if you want to discuss further. Thanks for doing this. You rock! Dr. M
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of course! i will be editing my film in nyc and meeting with some of the truthaids artisans i am working with so i just have to figure out when the studio times are booked. i can't wait to see your product. i am such a fan of gift exchange and reference it in the book i am writing. i can't tell you how crazy it was to see mauss come at me through you :-) you are really doing a great job with this stuff. it's a joy to be working with you. dr.m
Your e-mail was just the extra push of motivation that I needed to finish out strong. When I began my project I was (and continue to be) inspired by you, and to finish it out working with you is an incredible feeling. You are an amazing source of hope and inspiration to so many people; my only hope is to impact people the way you have :) It's funny how things have played out...I remember when you said 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
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.
150
49.
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54.
53.
50.
51.
52.
54.
55.
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 womanâ&#x20AC;&#x2122;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
aids in ethiopia:
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24. Zway, Ethiopia: Therapeutic Feeding Center.
107. Niger
24. Zway, Ethiopia: Therapeutic Feeding Center.
61.
9. Starving African children.
222.
30. African Child, Uganda.
intervention
supporting research; gift “To except is to commit
oneself....A gift is
received ‘with burden attached’. One does more
Marcel Mausse (1872-1950) was a French sociologist
famous for his classic text The Gift in which he studied archaic societies in order to understand exchange. Mauss questions
than derive benefit from a
the innate power of a gift that obliges reciprocation.
a challenge” (5: 31-41).
thing...one has accepted
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
spiritual power of
177.
154
your gift,...compels you... The...hau...possesses a kind of individuality” (5: 11-12).
tie occurring through
things, is one between souls, because the thing itself posses a soul 177. Lady from the Arabore tribe. Ethiopia 2005.
.
(5: 12)
aids in ethiopia:
born without rights
“What
“The recipients of one day
and exchanged, is the fact that the thing received is not
become the givers
inactive...it [will always] possess something
of the next” (5: 22).
of [the giver” (5: 12).
177.
177.
An “irrevocable contract [is created]...Through the
“In reality, [
gifts] merely act
as representatives
thing passed on, even it if is
of the spirits, because these exchanges and contracts
consumable, the alliance that has been contracted is no momentary phenomenon,
not only bear people and things along in their wake, but
and the contracting parties are deemed to be in a state of
also the sacred beings...
associated with
perpetual dependence
towards one another” (5: 63-64).
imposes obligation in the present received
that are them” (5: 15-16). 177. Surma Mother and her boy. Ethiopia.
177. Two sisters in the Lower Omo Valley, Ethiopia .
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 (birth-2 years), pre-operational (2-7 years), concrete operational (7-11 years), and formal operational (11 years and up). During the senorimotor stage, children understand “object permanance,” the realization that things exist even when not present. During the pre-operational stage, children learn to
represent objets through pictures and words. During the concrete 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). 156
their understanding of themselves and others,
their knowledge of the physical world, and their
ability to communicate with peers and adults” (18).
177. Children playing at school, Ethiopia
177. Children playing at school, Ethiopia
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.
224. Erbore boys playing.
177. Children playing at school, Ethiopia
It helps teach object manipulation, value judgment, role-models, and social awareness” (19).
157. Ethiopia boys playing.
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
functionally acts as
belonging
‘good luck’ and to identify themselves as to…[a] tribe, group or culture. Body adornment is a
a
means to communicate social position or
display of beauty”
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. Mursi Tribe Woman. Ethiopia.
158
157. Nyangatom Tribe, Ethiopia. “ The girls wear tons of necklaces. The more she has, the better it is.”
157. Korcho village, Karo tribe, South Ethiopia, in front of Omo river.
empowering coating” (51).
157. Afar Girl
.
(55)
aids in ethiopia:
born without rights
“In Africa there is no
“Certain objects have mystical or
spiritual meaning like the
gender boundary
in the realm of beads. Both men and women wear beads for a variety of reasons-including adornment and status....Colours and patterns convey messages, in a complex litany of coded meanings” (54).
ability to ward off evil or illness. Wealth and status are commonly shown with displays of jewelry” (51).
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 and worn for a particular reason, ranging from aesthetics
157. Ethiopia
“Adornment remains the primary 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
intervention
supporting research; methods of change
“Because many women have limited control over their
contraceptive use, integrating gender issues into reproductive health and HIV/AIDS sexual lives and
program interventions becomes critical. Active male
224. African AIDS orphans.
“Ethiopian society is highly structured, and great deference
involvement in reproductive and family care-
is paid to religious, political and civil teachers, and other prominent community members... social
and reduces gender based violence that affects
giving enhances responsible parenthood
leaders,
women’s reproductive health and rights” (41:15).
change, bringing new messages into communities through
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
respected members of their communities, have proven effective in changing attitudes men by
and
160
behaviors”
.
(41: 8)
26. Vineeth, 7 months old and HIV-positive, cries at the Community Health Education Society orphanage in Madras, India.
225.
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.
“...materials, including cue cards, radio messages, and videos, have been widely
30.
“...community-wide saturation with workshops, conversation and debate, thought-provoking public theatre, and other behavior
change communication materials. Such comprehensive public
distributed throughout project
education is informed by the understanding that deeply entrenched attitudes and gender roles can only evolve after
communities. Community
conversation
a critical percentage of people in a community engage in the discourse. These widespread messages resonate immediately with many powerful girls and women, and a great many thoughtful
sessions stimulate men and women to abandon harmful
traditional practices and
gender-based violence” (41: 11).
226.
and responsive men also take on leadership roles in debating 13.
and popularizing these new ideas” (41: 12).
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... And when children lose their parents and must look after younger siblings, HIV/AIDS is an
“Besa is the second oldest of five sisters orphaned in 1999 when both their parents
died of AIDS... Despite the fact
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 228.
162
229.
to say ‘HIV/AIDS’?” (55).
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. ...One of the goals of CARE’s
that teenagers...will
testing is to encourage
the younger generation
people to
experiences, they will encourage the young
“Community leaders hope
become role models for
voluntary counseling and
and that by sharing their
talk about HIV/
AIDS. “They may hesitate to
mention HIV/AIDS,” she says,
people...to avoid the pitfalls that could lead to a life-shortening illness” (13).
“but coming to be tested is a sign of behavior change” (55).
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.
intervention
a two step communication system
HAU
overview; hau
164
HAU is a two-step parent/child communication 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 â&#x20AC;&#x153;HAUâ&#x20AC;? to talk about them.
aids in ethiopia;
born without rights
Riongo, Kenya, Nov. 3, 2006. U.S. Navy photo by Chief Petty Officer Eric A. Clement
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 166
Traditional International Playing Cards
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.
intervention
hau; description, modified deck of cards
Prototype: HAU King: Front
Prototype: HAU Queen: Back
Q
K
HAU
Playing Cards: K
168
Q
HAUâ&#x20AC;&#x2122;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 into the public realm.
Prototype: HAU card back
aids in ethiopia:
born without rights
Traditional Ethiopian Playing Cards
Custom Playing Cards
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/AIDSâ&#x20AC;&#x2122;s thriving exisitance. Prototype, HAU Pendant
170
Prototype, Incorporations of HAU Pendant
aids in ethiopia:
born without rights
Woman wearing traditional Hamar Tribe jewelry, Ethiopia.
Girl wearing traditional Karo tribe jewelry, Ethiopia.
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 parent and child by obligation, but also by honor. It is the nature of this bond that affords HAU the ability to bring imperative dialogue to the surface.
172
1.
Aishetu is born to a HIVpositive mother but, like her siblings, does not contract the virus. From infancy, Aishetu admires the necklaces her siblings wear. Aishetu’s mother, explains that one day Aishetu will wear jewelry of her own.
2.
At four years old Aishetu’s mother gives her a special gift, HAU. Together, they use HAU to create a unique necklace that Aishtu proudly wears. Shortly threeafter, Aishetu’s mother dies of AIDS, leaving her older sister, Desta to care for her.
aids in ethiopia:
born without rights
3.
Gabra uses HAU to help explain their motherâ&#x20AC;&#x2122;s death to Aishetu. Desta continues to teach Aishetu about HIV/AIDS with the help of HAU. As Aishetu matures she finds comfort in her necklace, a gift from her mother, and is always reminded of the lessons her sister taught her through HAU.
4. At fifteen Aishtu marries and
continues to find comfort in her necklace. The lessons learned from HAU help Aishtu make difficult choices, and she is guided and comforted by the necklace that makes her always feel accompanied by her mother and sister.
5. Aishetu births a son and gifts him
HAU, following her motherâ&#x20AC;&#x2122;s example. She uses HAU to teach her son about HIV/AIDS, and the way it affected her mother. She and her son bond over their shared adornment as he ages. Through this process, a tradition is born..
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. 174
Africa, HIV-positive rally
aids in ethiopia:
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Example organizations: Pathfinder International CARE UNICEF UNAIDS UNAIDS campaign, World AIDS day 2006
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
aids in ethiopia:
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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.
project sources
bibliography
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aids in ethiopia:
born without rights