KAMPALA, UGANDA -- Rose Akware, 26, is one of Uganda’s nearly one million disabled women. She is both deaf and mentally disabled. Like many disabled women here, Akware has had no access to public health messaging about HIV/AIDS or safe sex.
She says she knew nothing about safe sex or reproductive rights when she conceived her daughter last year.
Akware met the father of her child three years ago after receiving money from her own father to open a small shoe store. The man, who Akware would not name, pretended to be deaf and mentally disabled too. Soon they were lovers.
When she fell sick a few months after their relationship began, he told to her to go to the hospital. There, she found out she was pregnant. Five months later, just before the baby was born, he revealed that he was neither deaf nor disabled. He took her money and all the shoes in her store and disappeared.
The search for him was futile because Akware cannot communicate with her neighbors and, at the time, she had no resources.
Akware soon began to fall sick frequently, but she was refused services at the health center many times because no one could understand her. Eventually, she found someone in her community who was willing to try to translate for her and, with the help of her new friend, Akware finally received services at the clinic. It was then she found out she was HIV positive. Her daughter was born HIV negative, but will require more testing throughout the first few years of her life.
Akware told The Press Institute, through a translator, that she did not know how people contracted AIDS or got pregnant. She says there is “a lack of information” for people like her in Uganda who are mentally and physically disabled.
Throughout Uganda, most communities have a stigma against disabled women. They are assumed to be asexual and rarely receive sex education. Public health messages are also not available for people who are deaf or blind.
In Uganda, nearly one million women are classified as disabled. But the local health centers here are not staffed or equipped to care for disabled women. What’s worse, many women here report being abused or ridiculed by nurses in the local health posts. So as the number of disabled women having unplanned pregnancies and other dangerous health complications, including the spread of AIDS, continue to rise, the National Union of Women with Disabilities of Uganda, NUWODU, has begun to educate the disabled community and has created tailored public health messages for the first time.
Christine Kyomuhendo, 28, is mentally disabled. She says she has always dreamed of having a relationship with a man, but cannot share her thoughts with anyone, including her mother. Kyomuhendo cannot care for herself. She is bathed by her mother, who still cares for her on a daily basis. “I am not worthy of any man’s attention because of my disability,” she says.
When her mother leaves, Kyomuhendo admits that she has had multiple sexual partners over the last few years. But her boyfriends are often married and have been abusive.
Her last boyfriend, a married teacher, used to send a bodaboda, a motorcycle taxi, to pick her up and take her to a secret location. She says he would tell the community that she was his sister. She was willing to go along with his stories, but soon, things got complicated.
When she got pregnant, he asked her to terminate the pregnancy. She refused.
While she says she was excited about the possibility of having a baby, she did not seek prenatal care and admits she did not know how to take care for herself. She never told her mother and a few months later, she delivered a premature stillborn.
“I never thought that my daughter needed to know any information about AIDS or pregnancy because I knew that she would never be sexually active” says Kyomuhendo’s mother, who asked not to be named.
In addition to unplanned pregnancy, many disabled girls are also frequent victims of rape. Philomena Akwero, 18, who is mentally disabled, has been raped multiple times. The first rape, last year, led to the birth of her now 10-month-old daughter.
The second time she was raped, it was by a married neighbor.
While the father of her daughter disappeared when confronted about taking responsibility for the baby, Akwero’s married neighbor was arrested and served a short prison sentence for rape.
Today, Akwero’s biggest battle is with her family. She says she loves her daughter and wants to have more children, but her parents disagree. “I don’t want my daughter to have sexual relationships because she incapable of taking care of children,” says her mother who contacted their local health center about having her daughter sterilized. The center would not perform the operation without Akwero’s consent.
In some cases, the children of disabled women are hidden by parents from the public. In the Masaka district, one child of a disabled parent was reported to have been inadvertently starved by the parents. Richard Khaemba, program coordinator of NUWODU, says many disabled parents do not know how to take care of their children. “A girl of 17 years may not even know her body parts as she has never bathed herself,” he says. Such a girl may not even know what is happening to her when she is raped, Khaemba says.
While rape and the pregnancies that often result are major issues for the local community, advocates say that the inability of local health centers to accommodate disabled women and young mothers is fueling the problem.
A nurse once told Josephine Babirye, who is crippled in one leg, “Quickly climb the bed. Why do you pretend not to be able to get to bed, you do when you want to have sex? If you cannot climb the bed go back home.” She says tried to get on the bed, but could not until someone helped her.
The dehumanizing treatment given to disabled women in medical centers has forced them seek medical assistance from traditional birth attendants who are not capable of establishing pregnancy complications early or providing HIV testing.
According to Khaemba of NUWODU, most of these women are yearning for someone to show them love. “These women stand a higher chance of getting sexually transmitted diseases because they cannot negotiate safer sex,” Khaemba says. He has pioneered a new program, Sex by Choice not by Chance, which educates disabled women about their sexual rights.
There are several nongovernmental organizations working to assist the disabled in Uganda. The Uganda National Association for the Blind, UNAB, has been providing school fees and materials, trainings, recreation activities, and empowerment to children and adults with disability in Uganda. The National Union of Disabled Persons of Uganda, NUDIPU, is an indigenous umbrella NGO that brings together all categories of disabilities including physically, sensory and mentally impaired people. NUDIPU has recruited more than 47,000 councilors with disabilities at the village and district levels to spread public health messages. Among those, 50 percent are women seeking disability sensitive provisions in the national constitution and several parliamentary acts. The group says they are also hopeful for Presidential appointments of disabled persons to positions of authority like minister of state, a resident district commissioner or a presidential adviser.
There are currently laws against the discrimination of disabled people here. Uganda is a signatory to the UN Convention on the Rights of Persons with Disabilities. However, Khaemba says the implementation of these laws remains a challenge.
