Beatrice Were was infected with HIV by her
husband. Now one of Uganda’s most outspoken critics of abstinence-only
HIV prevention, she talks to Amanda Elliot about the absurdity
of sexual abstinence and the mystery of the missing condoms
Photo John Clarkson
Beatrice
Were still shudders when she recalls the events leading up to the death of
her husband from Aids-related illness in a Kampala hospital in 1991. Even
as her husband lay moribund and blind from meningitis, his family was busy
stocktaking their son’s modest possessions in his small house: a black
and white TV, a simple wall clock, the sofa, the crockery and even the fan.
But the moment Beatrice finally realised she was headed for big trouble was
when his family moved him out of hospital into a shed in the bottom of their
garden and handed his care over to a local healer.
“They were very sure he would die and they didn’t believe it was
HIV. They said he was better off with his family. They thought witchcraft
had made him ill and they blamed me.”
Hospital ‘a waste of money’
At the time, Beatrice was a young breastfeeding mother of two, with a three
month old baby and a toddler of four.
He was diagnosed with cryptococcal meningitis but, after three weeks on the
medical ward, Beatrice, an intelligent and inquisitive young bride, suspected
something was up.
“The doctor in charge asked questions that made me curious. My husband
became angry when I asked him if it was Aids. Eventually the doctors took
me to one side and told me he had HIV.”
Beatrice suspected she was HIV positive too but didn’t take a test until
four months after his death.
“I was very scared to have it confirmed. I was in a state of shock and
had more immediate concerns like having no job, no money and two small children
to look after.” But worse was to come.
“His family insisted he left the Government hospital where he was getting
the best medical care. Even my mother-in-law said she thought it was a waste
of time and money looking after someone who would never recover.
“It became clear they weren’t interested in me or my children.
They just wanted our possessions.”
A victim of inheritance
Her husband died in September 1991 and, after his burial, she attended a family
meeting at their ancestral home on the border with Kenya.
After a day and night of haggling it became clear that, according to custom
Beatrice and her children were to became the property of his younger brother.
“I went through the injustice of becoming a widow in Uganda.
I still get angry when I think about it now.”
The family was oblivious of the risk that Beatrice’s HIV posed to her
brother-in-law.
“His brother was so young. It was madness but it was the way they did
things; his father was polygamous.”
Beatrice ignited
Beatrice,
still desperate, grieving and struggling to feed her children, turned to her
father who told her she did not have to do anything against her will.
With help from a group of Uganda women lawyers, she successfully fought off
the family’s attempt to control her husband’s modest estate -
in a direct challenge to the custom of land inheritance.
Her father offered her a small building in his compound. She moved in and
slowly started to rebuild her life.
“I rejected them and their motives. It was 15 years ago but it feels
like it just happened. It ignited me. I am determined to let women know of
the injustice out there.”
Now an activist with international charity ActionAid, Beatrice sees the battle
against HIV as inextricably linked to the fight for the rights of women and
children.
Breaking free
Beatrice eventually got a job working as a hospital social worker while her
father, rather non-traditionally, minded the children. “He was a great
nanny,” she laughs.
A personal breakthrough came for Beatrice when she attended a conference organised
by GNP+ in South Africa and met other HIV positive Ugandans from TASO, the
Ugandan Aids Treatment and Support Organisation.
“It was a major turning point. They made me feel it was not so terrible
to have HIV. I came back wanting to open up, break free, live and be who I
wanted to be.”
On her return, she set up a small support group and later registered it as
an NGO. This was to become the National Community of Women Living with Aids
(NCWOLA).
By now Beatrice had a new job counselling people living with HIV in hospital.
But the burden of secrecy about her HIV status was too great to bear.
She finally disclosed her status during a speech to the 1995 ICASA conference
in Kampala.
“From that time I started my journey as a public figure and activist.
I put much of my activism down to the way I was treated by my in-laws.”
Memory books
As well as founding NCWOLA, which now has some 40,000 members in 20 districts,
Beatrice created the Memory Book project, an idea adopted across many countries.
This simple idea lets parents with Aids to prepare their children for bereavement
and communicate love, memories and prevention messages through a shared book.
Beatrice devised the Memory Book when confronted by her own need to communicate
her situation to her daughters. She has never been seriously ill but went
on treatments when her counts fell. ActionAid runs a medical programme for
employees that gives her access to HIV meds, but there were times when she
remembers sharing her ARVs with friends who could not get the drugs. In Uganda
only around half of the HIV positive population have access to drugs and three
quarters of these have to pay for them.
Slush fund for the right
Beatrice was a 19-year-old virgin when she married her husband, yet she still
became infected with HIV. So it’s no surprise that she is an outspoken
critic of the country’s abstinence-only HIV prevention policy.
“Uganda used to have the best prevention campaigns. There was information
on sex and catching HIV and stigma. Between 1992 and 2002 Museveni gave political
leadership and TASO was set up. They took prevalence from 30 per cent to six
per cent. It was seen as a breakthrough and was the big story at 1998 in Geneva,"
she says. But in 2003, President Bush launched his President’s Emergency
Plan for Aids Relief and Prevention (PEPFAR) which poured billions of dollars
into Africa, and especially Uganda. Money went to projects that promoted abstinence
and cut grants to those which pushed condom use. Beatrice, like many activists,
regards PEPFAR as a slush fund for the religious right that has divided civil
society in Uganda and across Africa.
“We welcomed the money to improve access to ARVs but there were strings.
Government policy changed.”
Tale
of the missing condoms
The ideological swing was swift. Museveni attacked condom use at the 2004
Bangkok World Aids Conference by denying they had contributed to Uganda’s
success. HIV prevention billboards stopped mentioning condoms and started
pushing abstinence only messages.
“The first lady, Museveni’s wife, whose office is funded by PePfAR,
started moralising about abstinence and stigmatising people who distributed
condoms.” Then the condoms went missing.
Before PePfAR, the Ugandan government would procure and distribute around
60-80 million condoms a year supplemented by 40 to 60 million more from donors.
In 2004 87.7 million condoms were distributed in Uganda. But by 2005 this
fell to just 30 million and distribution of free condoms halted. The country
needs around 120-150 million to meet demand.
What had happened? Beatrice says that the US restricted funding for condoms
to those in high risk groups which meant no more distribution in the wider
population.
Then the Ministry of Health recalled a batch of free government procured (Ingerbo
or Shield) condoms, after people complained they gave off a bad smell.
The condoms were sent for quality control testing which found holes in the
rubber. But further testing revealed the rest were fine. During the testing,
distribution was halted and 30 million Ingebos were impounded in a Government
warehouse. And, says Beatrice, as far as anyone knows they are still there.
“By then the government brand was so undermined that people would not
use them. Free condoms used to be available in clinics our people say there
are none in the clinics or in the refugee camps in the north.” All imported
condoms now have to undergo additional testing in Uganda.
Surge in infections
In May the consequences of this approach became clear when Uganda’s
Aids commissioner announced, that after years of decline, new HIV infections
had almost doubled from 70,000 in 2003 to 130,000 in 2005. The Lancet blamed
the condom shortage, while UN Africa envoy Stephen Lewis blamed US policies.
Beatrice says she now works for ActionAid Uganda because they are strong on
this issue. Earlier this year Beatrice took her message to the UK all-parliamentary
group on Aids and then in May to the UN special meeting on Aids.
Still bewitched
Beatrice has come along way since her fight with her in-laws. She now has
three girls, the oldest of whom is now 17. “I am very proud of her.
I have encouraged her to ask questions and get involved. ” And what
of her in-laws? “Occasionally they will contact me, but they still think
I am lying about the HIV because I look so well. They still think I bewitched
him.”
ActionAid: www.actionaid.org
National Community of Women Living with Aids: www.wougnet.org/Profiles/nacwola
Memory Book: www.memorybookproject.org
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