I was to be inherited by by a Senior Two dropout

When Beatrice Were’s husband died in 1991 leaving her with three children, she thought her world had crumbled. Then 23, hers was not only a battle of coming to terms with losing a spouse, but also accepting her HIV positive status.

She had got the news of her sero status three months back while nursing her husband who had been admitted in Mulago hospital with an illness she had assumed was malaria. Were was also two weeks pregnant with her last born baby.

With no machines to check the disease, Were said they spent a long time in hospital without the doctors telling them what her husband was suffering from. He had, however, been diagonised with crytococo meningitis, a major symptom of HIV/Aids.

But even with this clear sign, she says the doctors would still not confirm the likelihood of this disease. Because Aids was a new disease, Were’s in-laws thought she had bewitched her husband. “Up to now, they say ‘that woman bewitched our son otherwise how else would she still be surviving up to now’,” she says.

At her husband’s burial in the village, her hair was forcefully cut off while she slept and she was told it was customary for all widows and orphans.
“I pleaded with them to leave my hair because I had to go back to town and look for a job but they asked if their son who had died was not educated,” she recounts.

Rescuing myself
The Samia culture into which she was born and married dictates that a woman stays at the man’s home at least four days after his burial. On the fourth night after her husband’s burial, her children mysteriously went missing and she was left alone with an old woman in the middle of a bush where they had a temporary hut that had been constructed for the duration of the burial as culture demands.
Having grown up in Makindye, a Kampala suburb, Were had never interfaced with her culture so everything around her was new. It was total shock, therefore, when she learnt that she was supposed to be inherited by her brother-in-law, a Senior Two dropout that she and her husband had been paying school fees for.

Her relatives had left her behind because that is what culture demanded, and most of her friends were keeping their distance after finding out she was living with HIV. Left alone in the middle of nowhere, with no idea where her children were, Were now just waited for the worst to happen. Maybe, her throat would be cut next.

“That was when I decided to lose it and save myself or else be eaten up by culture. I started shouting on top of my voice, abused everyone around me starting with the old woman they had left behind to be in charge of the widow inheritance ceremony,” she recalls.

With disappointment in her tone, she says, “I had just lost a husband, was still coming to terms with being HIV positive and had a three-months-old baby I had delivered by Caesarian and now these people wanted me to be intimate with someone!”

As violently as she could, she threatened her in-laws that she would report them to police until they returned her children. When she returned to Kampala, she was thrown out of the the house by the bank where her husband had been employed.

She relocated to an old one-bedroom house on Sir Apollo Kaggwa Road, Makerere. The following days were difficult days of sometimes surviving on a meal a day with her children because the husband’s benefits from his job became difficult to collect. Her father-in-law refused to offer her any help, reminding her that she had been offered a husband who she rejected.

Life after rejecting a husband
In 1992, she sought and secured a place as a volunteer with the Uganda Red Cross Society in Makindye. She walked to and from work since she was not paid, but this job which let her interface with and counsel other people living with HIV, gratified her. “I chose to work with people living with HIV because I felt that nobody else would employ me.

“Besides, I thought I was dying soon, so, I decided to work with people with a similar problem,” she explains. Less than a year later, she was employed by a priest from Nsambya Home Care to be his translator. Soon, a position for a social worker fell vacant and she was able to fill it, finally having a proper paying job.

With her mother back to the village, her dad used to keep her children while she went to work. She eventually got benefits from the late husband’s workplace and her dad gave her a piece of land on which she built a two-bedroom house with support from the priest. In 1995, at a meeting organised by Major Ruranga Rubaramira, she met a man she had seen at her husband’s workplace and they connected. They began dating and wedded in 2000.
“At that time I was just looking for companionship but when medication that can prevent mother to child prevention was discovered, she took precautions and gave birth to her last born.

“I delivered her through a C-Section and followed all the other doctor’s orders to make sure she is negative. She is now a teenager,” she says.

Work experience
Were became an international export to different conferences and became the first African executive director of International Community of Women Living with HIV in United Kingdom (UK) in 2001 on a two-year contract.
From UK, she got a job with ActionAid as a national coordinator on HIV/Aids. She then worked as an executive director for UgaNet and the Global Campaigns, and policy advisor on HIV/Aids for Oxfam International where she retired from in 2012.She says her situation shaped what her role in the HIV/Aids struggle. She says after conflicting with her in laws, she felt the zeal to conquer anything that comes her way. Talk of making the best out of a bad situation!
She adds, “For the 23 years I have known I was infected, I have not been bedridden over any illness.” All her children are negative.

Starting Nacwola

While working in Nsambya, Were realised women had pycho-social problems such as isolation, worrying and these connected to past situations. She decided to start mobilising women and they often met at her home.

She then started the first support group of Women Living with HIV/Aids in Uganda. She named the group National Community of Women Living with HIV/Aids (Nacwola) in 1992. Then, there was only the Philly Lutaaya Initiative and The Aids Support Organisation (Taso).

She got support from World Health Organisation, which gave them tailoring machines, and United Nations Development Programme (UNDP) gave them Shs40m and the organisation started.

They soon extended their services to all the other places that had homecare services such as Mengo and Nsambya, and got a mobiliser in each area to join Nacwola. Nacwola is today operating in over 25 districts in Uganda.

Nacwola exposed Were and she began speaking at global conferences. The first time she publically disclosed her status was in 1993 at an international conference on HIV and STD’s in Africa at Nile Hotel, now Kampala Serena Hotel.

The fight against HIV/Aids and its evils

Who was the first person you opened up to about your status?
My daddy because we grew up as his friend. At one point he was concerned about why we were always in the hospital so I told him.

What is the most challenging encounter you have faced in your work?
Whenever I lost people I had grown to love, I would breakdown, cry and even throw up. But the strangest of them all was when I had to counsel a woman of my mother’s age and with the same name.

Her story traumatised me a lot because she had separated with her husband for seven years but when her husband fell sick, her in-laws pleaded with her to come back and nurse him. Unfortunately, when he recovered a bit, he raped her and she got infected. It was hurting seeing this woman helpless.

What is the most hurting thing you experienced in your work?
There is a boy Raymond who died in 1996. He was born positive and used to fall sick often. He hoped to become an engineer when he grows up but never lived to achieve this dream.

One day while lying in the bedroom sick he overheard, his grandmother and uncles discussing where they will bury him. He came and told me and it hurt. He died after sitting his Primary Seven exams and when results came back, he had scored five aggregates and got admitted to Kings College Budo. I wanted to see him transform.

What is your take on women wearing miniskirts?
I think miniskirts are not a problem but the attitude we have towards women. After all even people who wear gomesis get infected! Why should you look at a miniskirt and think about sex?

What are your future plans?
Though I do private counselling, I have now settled down to rest. The doctor advised me to take a break because I had strained my back. Watch the space for the rest.