New Vision - December 14, 2004
Alice Emasu

Nobody explained to her the cause of their deaths.

Mukasa, a resident of Gayaza in Kampala, had depended on the scanty HIV/AIDS information from her five primary-school-going children.

Mukasa's children, particularly, her second daughter, 13, hardly missed a day without sharing information she learnt at school on what HIV/AIDS was and how it was spread. She presented the information through posters, audiotapes using sign language.

Unlike Mukasa, Fiona Nambooze, also a deaf mother in Kampala is ignorant about HIV/AIDS. "AIDS is the same as fever. It is a curse from God to punish couples. It has no cure, but when one is in the good books of God, your life will be spared," she says through Hellen Nambuusi, a sign language interpreter.

But Joyce Nakato's plight is even worse. She is a deaf mother operating a grocery in Kampala. She failed to communicate with Women's Vision because she could not understand the interpreter's sign language.

Mukasa, the Gender and theatre co-ordinator for the Uganda national union of the deaf is lucky because her parents sent her to school. And her children can share with her the HIV/AIDS information they learn at school.

Many deaf people, paricularly women, only get to know about HIV/AIDS after they lose a family member. Unfortunately, due to the stigma and discrimination deaf people face, many fear to approach neighbours and friends and rely on the mercy of God to fight HIV/AIDS.

"I was shocked and puzzled after my uncle and aunt died mysteriously. I was determined to know more about the dreaded scourge. I proceeded to the Uganda Aids commission where I learnt HIV was mainly spread through sex with an infected person."

Mukasa recalls being helped to learn the basics about HIV/AIDS, its spread, prevention, symptoms and signs, positive living, prevention of mother-to-child transmission and the vulnerability of women to HIV/AIDS by Grace Akello, HIV/AIDS trainer then at the Uganda AIDS Commission.

The communication barrier due to lack of a national sign language, Mukasa says, has perpetuated the vulnerability of deaf women to HIV/AIDS.

A few deaf people, who know about HIV/AIDS only know the basics like its definition, which they only learn by searching for information from family, friends, literature and the internet. This is usually possible among the elite group.

Few deaf people understand sign language. Yet there is little effort by the Government to utilise services of those few to train the deaf," regrets the soft-spoken, highly versatile woman. The population of the deaf people is today estimated at 1,000 women and 1,500 men.

She says many deaf people are ignorant about AIDS because their family, especially their parents, think they are not sexually active.

Mukasa says also husbands of deaf women underlook the sexual needs of their deaf wives because they think these women cannot get sex from other men, a practice she says exposes many deaf people to HIV/AIDS. "When AIDs gets into the deaf people's community, it spreads like fire. Deaf people tend to associate a lot sexually amongst themselves."

Mukasa, who has begun training deaf women on care and counselling for people living with HIV/AIDS, regrets many deaf people do not understand the national sign language.

"When I visited Masaka last week, I was shocked to learn that majority of the deaf could not understand me. A number of them preferred to use gestures. You had to do it repeatedly in order to make them understand a point. the situation is worse for the deaf women in moroto because most of them have never been to school," she says.

The discrimination of the deaf is what Mukasa thinks is a stumbling block in the fight against HIV/AIDS. Society doesn't address the deaf people by their names, but by the stigmatising name 'Kasiru' (the daft). The most affected are the women because society doesn't expect them to produce normal children.

Many people think that deaf women produce deaf children and this deters deaf women from having stable relationships with the men, who approach them thus exposing them to HIV/AIDS," observes Mukasa whose five children are not deaf.

She cites a nasty scenario when she visited Kampala City Council offices to encourage them to incorporate the deaf and blind people into their HIV/AIDs programmes. "My pleas were rejected. I was told it would be costly for them to hire interpreters. My efforts to speak to the Mayor were also frustrated by the junior staff, who could not allow me to access him.

"How I wish I could meet President Museveni and the Kampala Mayor face to face, to make them understand the plight of the deaf."

Margaret Baba diri, MP for people with disabilities says there is no specific HIV/AIDS programme for the deaf and the blind.

She says the challenge is for the deaf and blind to benefit from the HIV/AIDS campaign messages. But this requires the Government to hire or train more sign interpreters.

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