FEATURED
SOCIAL ENTREPRENEUR
Silja Elena & The Topsy
Sanctuary, South Africa
At Topsy, women can die with dignity.
The Sanctuary is one of the few
places in South Africa where these mothers, living their last days with
full blown AIDS, can expect to be treated with respect and kindness. And
they know their children will be safe.
A short distance outside of
Johannesburg, in the Dipaleseng area of Mpumalanga Province, the Topsy
Sanctuary hides surrounded by dusty meadow and farmland. Founded by social
entrepreneurs Silja Elena and Duke Kaufman, the Topsy Sanctuary, a village
of 36,000 square feet of facilities, serves as a home for young people
whose parents have succumbed to the devastating disease that now grips
sub-Saharan Africa. Topsy also hosts a home based care program, which
enables the foundation to reach deeply into local townships, providing
medical assistance to those least able to pay and keeping watch over
families about to lose their parents. In total, Topsy serves just over
5000 people in the townships. The in-home medical treatment offered by
Topsy covers all ailments, partly so as to avoid the doctor and volunteers
becoming labeled and consequently ineffective as “AIDS Workers”. The
stigma here is almost as strong as the summer sun. In South Africa,
people have been mutilated and even killed for publicly acknowledging they
are HIV positive.
Size of the Issue
Women and girls in Africa and
elsewhere in the developing world, due to their poor access to education
and training, lower social status and lack of employment, are left with
weakened independence and power for negotiating use of a condom or
fidelity with men and with little economic ability to leave a dangerous
relationship. The UNAIDS 2005 Update states, “Widespread inequalities
including political, social, cultural and human security factors
exacerbate the situation for women and girls.”
With respect to orphans, the
prognosis is worse. UNAIDS estimates that by 2010 there will be 1.5
million children orphaned as a result of AIDS in South Africa alone. Some
will have contracted the disease themselves and most will grow up under
strong stigma and resulting discrimination. Children that have lost both
parents are more likely to drop out of school and end up as child laborers
than children that have one or more parents living. A study in the late
1990s in Kenya revealed
that 52 percent of AIDS orphans studied were not in school. These young
people must be allowed to become active participants in societies with
their rights protected and their needs met in a nurturing environment.
Prevention Challenge
We accompany Jana Oosthuizen,
Topsy’s sole staff doctor of 31 years old, on a home care visit to a
Balfour township, one of many dotting the countryside surrounding the
Topsy Sanctuary. This township is named Siyathemba, or “Place of Hope”.
Jana examines a woman coughing. We
stand in a line like eager interns, pressed up against a corrugated metal
wall in the one-room hut taking notes. A table, bed, couch and chair
crowd the room, and a young woman salvages a light bulb to fill the
overhanging socket. The stifling heat rises another few degrees.
Carefully pasted newspaper and beer labels decorating one wall offer a
lively contradiction to the somber discussion taking place. Jana is so
gentle, sitting with the patient, talking softly and often touching their
leg or shoulder. I am astounded at the family’s comfort level with the
watching eyes of so many white foreigners. Jana takes her blood pressure,
provides a prescription of pills and explains their use before concluding
the appointment. 
The woman coughing is bedecked
with red yarn tied around each wrist and ankle. I shoot Jana a
questioning glance. “The medicine doctors,” Jana explains, gesturing at
the yarn - one of many treatments prescribed by the local medicine men.
Myths and local cultural practices
are two of the stronger thrusts disabling the fight against HIV. We are
told South African black men believe it manly to have multiple sexual
partners or even multiple wives. Monogamy seems only to be a requirement
of the women. Prostitution is prevalent in towns where migrant workers
travel for work and live separated for long periods of time from their
families. HIV prevalence among sex workers in South Africa was
approximately 50 percent in 2000. Condoms are often considered an affront
to manhood, and despite condom dispensers and mass education campaigns,
their usage is still limited. Additionally, according to the 2002 UNAIDS
Report, the so-called “condom gap” - the number of condoms that are
needed, but not yet available, if all populations are to protect
themselves from sexually transmitted disease - is estimated at 2 billion a
year in sub-Saharan Africa.
Women have very limited sexual
rights or rights over their bodies in traditional South African black
society. We are told they are expected to provide for their men’s needs
and are often beaten or raped if they do not concede. Horror stories of
domestic abuse or gang rapes organized by a boyfriend to teach a
girlfriend a lesson are prevalent. Even boys as young as twelve years old
are forcing young girls to have unwanted sex. Often when a woman tests
positive for HIV, her man beats her thinking she has been unfaithful. Few
men bother to get tested. Those who get sick usually think it is for
another reason. The men often return to their own mothers when they can
no longer work adding to the burden of the women still living. When
husbands die, in some parts of Africa, it is customary for the brother to
take on the wives of his deceased sibling. The disease continues to
spread.
Half of young teenage girls in
sub-Saharan Africa do not believe that a healthy-looking person can have
HIV, according to the UNAIDS Report on the Global HIV/AIDS Epidemic 2002.
According to a Kaiser Family Foundation South African National Youth
Survey (2000), 39 percent of girls surveyed have been forced to have sex
and 33 percent say they are afraid of saying no to sex. According to the
UNAIDS 2002 Report, in South Africa, among young people aged 15-24, female
prevalence rates are estimated to be between 21 and 31 percent. Male
prevalence rates are only estimated at 9 to 13 percent.
The stigma against people living
with AIDS is so severe, that few people admit or even go so far as to
check if they are infected. There have been stories of villages beating
people to death who have been discovered to have HIV. But many women
understand the risk and many are aware of the appropriate prevention
methods. And yet women have no voice, they have no control over whether
their men stay monogamous, and they have relatively little ability to
refuse sex or insist on a condom.
Perhaps the most startling and
most disturbing myth and consequential practice is that sleeping with a
virgin will eliminate the disease. Men who fear infection often seek out
a young girl (sometimes a small child) to ensure they are virgins. The
incidence of reported rape in South Africa is one of the highest in the
world among countries not at war. But women told us that rape is often
only considered to have happened when the perpetrator is a stranger. Many
go unreported.
Back at Topsy, Silja is giving us
the background for a particularly powerful story: The social services
system in South Africa, called “Kinship Care” does not look closely into
the welfare of placed children, most of them AIDS orphans. Young people
are left with extended family as long as there is at least one adult to
take care of them. It does not matter if that adult is an alcoholic,
abusing the children or nonexistent. Many family members volunteer for
the responsibility because it means a stipend from the government. Though
there is no guarantee that the foster parent will actually remain with the
child in between payments.
In contrast, when Topsy identifies
a single mother (many fathers migrate to seek work given South Africa’s
nearly 40 percent unemployment rate) infected and dying, they will
conduct in-home treatment as long as possible. When her health
deteriorates to the lowest level, the mother and children are moved to the
Topsy Sanctuary where her children will live and be cared for after her
death. The mother can then die with dignity, knowing her children will be
safe.
There was one mother, Silja
remembers, that passed away before she could be moved by Topsy staff. The
mother had an infant girl, Thobile of about eight months, who the staff
believed might be at risk in the remaining family environment. The infant
had remained in the care of relatives only for the time period during
which the mother’s funeral was held. Silja set out immediately thereafter
to Siyathemba township to retrieve the girl and bring her to the
orphanage. She arrived in the local township to find a very irritable
baby, but was relieved to be able to transport her back to the Sanctuary
where she would find a new life.
Upon their return, the baby messed
her diaper. The caring foundation director addressed the infant’s needs
and noticed a concerning rash. She brought Dr. Jana Oosthuizen in to
examine the baby. Jana emerged from her office with a look of despair.
This precious eight-month-old little girl had been raped at her own
mother’s funeral. Shaking their heads in disbelief, there was nothing to
do, they felt, but love the child as hard as they knew how.
Unfortunately, the little child had given up on life. As Silja recounts,
the trauma had been more than she could deal with on an emotional,
psychological and spiritual level. Thobile stopped eating and died two
weeks later.
“Topsy has to exist,” Silja plainly states.
One Solution
As they wipe tears from their
eyes, you can see straight through to the passion in their hearts that
drives their work. It was five years ago when Silja and Duke felt
compelled to do something about the growing orphan tragedy, when Silja was
only 28 years old . Silja, now 33 and a single parent, believes that every
child deserves what she had growing up – loving care and a roof over their
head. Silja and Duke have committed to help every young orphan in their
care get to college. Already so many AIDS orphans line the streets,
begging for a coin to watch your car.
But at Topsy, the children are
playing and helping each other with their school work. Approximately 15
percent of Topsy’s children are HIV positive. They live in dormitory style
rooms that they are allowed to decorate themselves. Every child gets their
own clothes – there is no group sharing of clothes or uniforms that would
detract from the development of each one’s identity.
The walls surrounding the
Sanctuary are brightly colored with happy pictures of African animals and
people holding hands in hopeful unity. A beautifully constructed
playground stands as a testament to the dedication of a few young girls
from Europe who were so fulfilled by their volunteer experience at the
orphanage that they alone raised the funds and constructed the playground
for the young residents.
The first mother that passed away
at the Sanctuary had been discovered by the directors left to die in her
home on a concrete floor in winter with no mattress or blanket. There was
a 3 ½ year old child crouched beside her. Silja exclaims as she recounts
the story, “People deserve dignity! These women didn’t choose. They don’t
determine when, with whom or the protection of sex. They are caused to be
victims and don’t deserve to be ostracized.”
Topsy scooped her up and brought
her to the Sanctuary. Nearing her death, the woman asked Silja to come to
her bedside. She asked to have in writing a guarantee that Topsy would
take care of her son, as she had come to distrust the fate her child would
meet after her death. So, as requested, Silja drafted something in writing
for her. The mother died the next day.
Her son, Bongani, was also near
death from the effects of AIDS. At that time, the government of South
Africa prohibited the distribution of anti-retroviral drugs to children.
Silja said they reacted to the situation as human beings, rather than
fight the government for approval. They decided to take a personal risk
and give him the medication. He was the first child who received such
treatment at Topsy. Today, Bongani is six years old and the virus is
almost undetectable in his system.
Silja and Duke use the success
stories of children like Bongani and the tragedies of children like
Thobile to frame the desperate need that Topsy fills in the communities
they serve. “The beauty of Topsy for me,” Silja explains, “is that I can
see the innate goodness that still exists in human beings – the children
that do collections, the grandmas that knit colorful clothing for the
children, the individuals who donate 30R (approx. US$4) each month
consistently because they want to, not because they have to.”
Despite the tragedy that touches
many of the lives of their young family at Topsy, Silja is hopeful. Like
many social entrepreneurs, she is driven by something beyond this world.
A calling she has known for years and a partnership with another visionary
that she considers a gift. She says, “I am so enriched by this
experience, especially by the men, women and children who really make it
work.”
Jana states, “For me, visiting the
U.S. opened my eyes to [the West’s] ignorance. They deal with small
numbers of people, doing an excellent one-on-one service of which we can
only dream. We are like a group of people trying to empty the ocean with
a teaspoon. [But] when I get discouraged, I think of one person that might
be sleeping tonight because they do not have pain anymore, one child that
might pass a test tomorrow because she had a meal today, one staff member
of Topsy that might be smiling at her children because she has a secure
income. This gives me hope in this apparent hopeless situation.” ■
© 2005
Gretchen Wallace. All rights reserved |
