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March 28, 2004

For Africa's Deaf and Blind, AIDS Is an Unknown Language

From: New York Times - USA - Mar 28, 2004


URU BURU, Kenya — To say AIDS in Kenyan Sign Language requires placing the index finger and thumb of both hands close to the face, which is supposed to be a re-creation of the skeletal appearance of a victim on the verge of death.

In other parts of Africa, other signs are used for the disease. AIDS can be conveyed by pretending to pluck clumps of hair out of one's head. Or by forming the letter A with both hands. Or by running one's fingers down the center of one's torso to indicate extreme slenderness.

Certainly most deaf people across Africa know there is an awful disease out there. But their knowledge is very limited. When it comes to education campaigns and prevention efforts, deaf Africans and other disabled people across the continent have been largely forgotten.

"AIDS is talked about so much in your world," Dominic O. Majiwa, a regional director for Africa at the World Federation for the Deaf, said using a sign-language interpreter. "Hearing people know all about it. But we deaf people often don't get the information."

The problem extends beyond Africa, but it is particularly acute here, where the disease is at its worst and where disabled people are still often shunned, hidden away and considered a curse. .

"These are the most marginalized of all people," said Nora E. Groce, a public health professor at Yale who is studying the problem of disabled people being ignored when it comes to AIDS. "The stereotype that many people have of disabled people is that they aren't sexually active. It just hasn't occurred to many people that they get AIDS, too."

The discrimination against disabled people manifests itself in numerous ways. AIDS education seminars are often held in buildings that are not wheelchair accessible. Deaf people, many of whom are literate in neither English nor Swahili, are turned away from AIDS testing centers because nobody knows how to communicate with them. Education campaigns, often on radio or television, do nothing to reach those who cannot see or hear the message.

"Deaf children grow up with the feeling that they're supposed to be quiet and be hidden away," said Julie Guberman, a deaf Peace Corps volunteer from Chicago who works at the Kibarani School for the Deaf. "They see people's mouths moving. But they feel they're not special enough to be involved in that."

The Peace Crops has a special program in Kenya that brings deaf American volunteers to schools for the deaf in remote areas of the country. Ms. Guberman and her husband, Jesse, who can hear but knows sign language, said they were surprised at how little the schoolchildren at Kibarani knew about the disease ravaging their country.

Making matters worse, some research indicates that disabled people, particularly women, are at a heightened risk of becoming infected. The rape of disabled women is a significant problem in parts of Africa, although statistics are scant. Researchers say the situation is aggravated by the mistaken belief that having sex with virgins can rid one of the virus that causes AIDS.

In Uganda, disabled women recently issued a report saying they were being preyed upon and then forgotten. "While the physically disabled women cannot run away from their abusers, the deaf, dumb and blind cannot shout or protect themselves," said the report by the Disabled Women's Network and Resource Organization.

The Ghana Federation of the Disabled found similar problems in a survey it released in January. One of the many grievances it described is that those in wheelchairs cannot gain access to most banks, post offices, government ministries and polling places.

Advocates for the rights of the blind in Malawi have issued a call for more H.I.V.-AIDS awareness messages in Braille.

There are signs of slow progress. Susan Mwikali, 23, appeared recently in a commercial aimed at disabled people in which she urged them to follow her lead and use condoms. Ms. Mwikali, the first runner-up in a beauty pageant organized last year for disabled Kenyan women, laughed heartily at the notion that disabled people do not have sex.

"Anybody can get AIDS, even disabled people," she said in the video in sign language, sitting beside Kenya's first lady, Lucy Kibaki. "The deaf, the blind, the crippled, we must all protect ourselves."

The problem is that the commercial has not reached many people. Organizers of the Miss Disability Kenya pageant do not have the $1,000 that television stations are demanding to put it on the air, and the stations have refused to broadcast it as a public service announcement.

Some grant money, however, is beginning to flow. Mr. Majiwa of the World Federation of the Deaf said he and other advocates in Kenya were turned down for years as they sought money from the government for AIDS prevention efforts aimed at the deaf. They knew deaf people with the disease. They also knew there was great ignorance among the deaf about how it was spread. But their proposals got nowhere.

Last year, however, there was a breakthrough. The government AIDS council gave them enough money to hold AIDS seminars for disabled people and to begin producing printed brochures featuring sign language.

The advocates, with financial support from the Centers for Disease Control and Prevention in Atlanta, have also set up an H.I.V. testing center specifically for deaf people in Kenya, one of the first in Africa. Since it opened its doors last fall, 500 people, most of them deaf, have come in for testing and information. Nobody is turned away.

"Many deaf people have died of AIDS," said Boniface Inyanya, chairman of the Kenya National Deaf H.I.V.-AIDS Education Program, using an interpreter. "Many of them are H.I.V. positive. Even more do not know enough to protect themselves."

Just as at other testing centers, patients line up to have their blood analyzed and wait nervously with a counselor for the results. But at the clinic in Buru Buru, on the outskirts of Nairobi, the results and information about how to deal with them are communicated in sign language.

To say H.I.V. positive, counselors first make the sign for AIDS. Then they shake their right fist up and down, meaning positive. Often, then, the patient begins to cry.

Copyright 2004 The New York Times Company