Disability the sad face of HIV
Jun 01, 2008
SHE sits pensively on the black chair, fidgeting once in a while. She tries to hold her handbag, but it falls down. Her feet cannot fit in her rubber shoes, which have seen better days. She looks up, fights a tear, but fails, as tears drop down her weathered cheeks.
By Joseph Kariuki
SHE sits pensively on the black chair, fidgeting once in a while. She tries to hold her handbag, but it falls down. Her feet cannot fit in her rubber shoes, which have seen better days. She looks up, fights a tear, but fails, as tears drop down her weathered cheeks.
She wipes it off with her hand and starts telling her story. This is no ordinary story. It is a story of her daily struggle, the sad tale of a woman who has fought against all odds like thousands of others who face these struggles.
It started in January last year when the counsellor disclosed the sad news. At first, Immaculate Kadondi, a mother of two, from Tororo thought it was a bad dream. But the results were there.
She was HIV-positive. Testing HIV-positive in this era of ARVs is no longer a death sentence, but Kadondi’s case had a sad twist.
Her CD4 count was 26, a dangerously low level, the doctors said. Her doctor’s advice was to start on antiretroviral drugs (ARVs) immediately and she complied.
Three months later, a tragic thing happened. Her left side of the body went numb. She could not even lift her child. This was the beginning of her journey to disability.
Since then, a lot has taken place in her life. She had to leave her rural home in Tororo and move in with relatives in Kawempe, a Kampala suburb.
Every Thursday, she has to go to The Aids Support Organisation (TASO) in Mulago Hospital for treatment. Because she cannot walk, she has to depend on three members of her family to take her to Mulago.
Her sad story does not end here. Her husband tested HIV-positive so did her young son.
When she visited the hospital to seek medical advice regarding her paralysis, the doctor said some of her brain tissues were damaged.
“The scan showed that several tissues in the brain were damaged. The doctor recommended surgery, which he said was dangerous,†Kadondi says.
Kadondi is just one of the many people who have been disabled by the HIV virus.
Cases abound in the country of many people who have been blinded by a virus whose fight Uganda is slow1y losing grip of.
Sources at TASO say the organisation has more than 130 disabled people under their care. However, despite the large number, Betty Kwagala, a counsellor for people with disabilities living with HIV, says the organisation has no budget to cater for them.
“People with disabilities, who are living positively face many challenges. It is difficult for them to adhere to treatment because they have to depend on their families to take them to hospital, which makes them a burden sometimes,†says Kwagala, who is disabled and has been working with different organisation fighting for the rights of the disabled.
According to the commissioner in charge of the disabled and the elderly at the Ministry of Gender, Herbert Baryayebwa, the ministry has an officer responsible for HIV whose task is to ensure that HIV treatment and care is integrated into the ministry’s programme.
“We consider people with disabilities as the most vulnerable because of the challenges they face,†says Baryayebwa.
He says only 34% of people with disabilities know how to read and write. This means that prevention messages do not reach them.
“The deaf cannot listen to radio, while the blind cannot watch TV or read newspapers. This makes it hard to disseminate information to them,†he says.
Despite these challenges, the ministry does not have literature materials that can be used by this group.
Baryayebwa contends that use of Braille is limited to a few people with disabilities and there are no efforts to tailor messages to specifically reach the disabled.
“People have a negative attitude towards people with disabilities. Most people think they are not sexually-active, yet they are,†says Baryayebwa.
Most organisations that deal with HIV-related issues have no strategies to reach people with disabilities. The Aids Information Centre executive director, Ronald Byaruhanga, says the organsation had no strategy to reach out to people with disabilities, but they were working out modalities of reaching this vulnerable group.
“People with disabilities should be free to get all the services like others do. There is need to use sign language for the deaf. We shall embark on this project soon,†Byaruhanga said.
Reproductive Health Uganda (RHU) spokesman Charles Ogwel concurs that little has been done to reach the disabled. RHU despite having wide network in the country has not targeted the disabled.
“There is need for a special programme to tackle issues affecting people with disabilities,†says Baryayebwa.
The ministry should formulate policies and guidelines to effectively address challenges faced by people with disabilities.
SHE sits pensively on the black chair, fidgeting once in a while. She tries to hold her handbag, but it falls down. Her feet cannot fit in her rubber shoes, which have seen better days. She looks up, fights a tear, but fails, as tears drop down her weathered cheeks.
She wipes it off with her hand and starts telling her story. This is no ordinary story. It is a story of her daily struggle, the sad tale of a woman who has fought against all odds like thousands of others who face these struggles.
It started in January last year when the counsellor disclosed the sad news. At first, Immaculate Kadondi, a mother of two, from Tororo thought it was a bad dream. But the results were there.
She was HIV-positive. Testing HIV-positive in this era of ARVs is no longer a death sentence, but Kadondi’s case had a sad twist.
Her CD4 count was 26, a dangerously low level, the doctors said. Her doctor’s advice was to start on antiretroviral drugs (ARVs) immediately and she complied.
Three months later, a tragic thing happened. Her left side of the body went numb. She could not even lift her child. This was the beginning of her journey to disability.
Since then, a lot has taken place in her life. She had to leave her rural home in Tororo and move in with relatives in Kawempe, a Kampala suburb.
Every Thursday, she has to go to The Aids Support Organisation (TASO) in Mulago Hospital for treatment. Because she cannot walk, she has to depend on three members of her family to take her to Mulago.
Her sad story does not end here. Her husband tested HIV-positive so did her young son.
When she visited the hospital to seek medical advice regarding her paralysis, the doctor said some of her brain tissues were damaged.
“The scan showed that several tissues in the brain were damaged. The doctor recommended surgery, which he said was dangerous,†Kadondi says.
Kadondi is just one of the many people who have been disabled by the HIV virus.
Cases abound in the country of many people who have been blinded by a virus whose fight Uganda is slow1y losing grip of.
Sources at TASO say the organisation has more than 130 disabled people under their care. However, despite the large number, Betty Kwagala, a counsellor for people with disabilities living with HIV, says the organisation has no budget to cater for them.
“People with disabilities, who are living positively face many challenges. It is difficult for them to adhere to treatment because they have to depend on their families to take them to hospital, which makes them a burden sometimes,†says Kwagala, who is disabled and has been working with different organisation fighting for the rights of the disabled.
According to the commissioner in charge of the disabled and the elderly at the Ministry of Gender, Herbert Baryayebwa, the ministry has an officer responsible for HIV whose task is to ensure that HIV treatment and care is integrated into the ministry’s programme.
“We consider people with disabilities as the most vulnerable because of the challenges they face,†says Baryayebwa.
He says only 34% of people with disabilities know how to read and write. This means that prevention messages do not reach them.
“The deaf cannot listen to radio, while the blind cannot watch TV or read newspapers. This makes it hard to disseminate information to them,†he says.
Despite these challenges, the ministry does not have literature materials that can be used by this group.
Baryayebwa contends that use of Braille is limited to a few people with disabilities and there are no efforts to tailor messages to specifically reach the disabled.
“People have a negative attitude towards people with disabilities. Most people think they are not sexually-active, yet they are,†says Baryayebwa.
Most organisations that deal with HIV-related issues have no strategies to reach people with disabilities. The Aids Information Centre executive director, Ronald Byaruhanga, says the organsation had no strategy to reach out to people with disabilities, but they were working out modalities of reaching this vulnerable group.
“People with disabilities should be free to get all the services like others do. There is need to use sign language for the deaf. We shall embark on this project soon,†Byaruhanga said.
Reproductive Health Uganda (RHU) spokesman Charles Ogwel concurs that little has been done to reach the disabled. RHU despite having wide network in the country has not targeted the disabled.
“There is need for a special programme to tackle issues affecting people with disabilities,†says Baryayebwa.
The ministry should formulate policies and guidelines to effectively address challenges faced by people with disabilities.