Double jeopardy calls for tailored interventions:
In the final part of our series on disability, OUR REPORTER finds that contrary to popular opinion, disabled persons are just as sexually active as anyone; however, they need specific interventions to help tame the urge among them.
Within months, Daniel Odede has changed from one of the most inspiring members of the disability community in the Teso sub-region to a man desperate for help. When we meet, by moonlight at his mud-and-wattle house in Soroti town, it is telling that Odede's pillar of strength appears to be Grace, his 12-year-old daughter.
"The children know everything," says Odede, his voice hoarse from a niggling throat infection. "In fact my daughter is the one who keeps encouraging me to take the tablets. She can even go and pick the medicine and bring it and say, 'Daddy, swallow'."
Odede has several children from various mothers, although only two now live with him. So, it was to Grace, and her seven-year-old brother that, news of their father's condition was delivered about three months ago.
"When they first got to know that I had HIV, they were very scared; they thought that maybe I would die the next day. But when they realised that I can live with these tablets, they are now okay," Odede says.
The children may have taken the news rather stoically, but their mother did not. She has walked out on them, and Odede must now figure out how to raise the children.
"The direct challenge is social inclusion; when my wife realised that I had this problem, she decided to isolate me," says Odede. "Whenever people hear that you have [HIV]; they tend to think that you are somebody who, maybe, is not even good to sit with, especially a person like me who already has another condition [disability]."
For a man like Odede, the adage that it never falls but rains seems to ring true. For most of his 55 years on earth, life has been a struggle albeit one with which he has coped tremendously. From what his parents say, Odede was about two, and happily growing up in Oale village, Katakwi sub-county, when a severe attack of measles left him paralysed, meaning he could only crawl or be carried.
Yet he carried on - or was carried on, by relatives - to school, until he completed O-level at Masaba SS in Mbale in 1974. In 1994, Odede, who moves in a wheelchair-tricycle, organised his disabled colleagues to form Soroti Disabled Bicycle Repairers Association (Sodibra), with him as leader. Sodibra has since lobbied donors in and outside the country, and constructed a commercial building, which houses a workshop and generates rental revenue.
Yet on the day we met, Odede had been up and down looking for guarantors to enable him get a bank loan. He hopes to launch little Grace into business - of making chapattis especially during holidays - so she can contribute to the family's upkeep.
"Yes, I have worked with the group [Sodibra] but you can't expect everything from the group; the liabilities for the group are for the group," he says. It says something about the man that although he was instrumental in setting up a group that has done well, he is not keen to exploit it for personal gain.
He admits that as a disabled person, life was hard enough; but now it is getting even harder. First, he says, complications appear to be increasing all at the same time. His asthma seems to be getting worse; his eyes need an operation at Mengo hospital to remove cataracts; and his throat infections are incessant.
"I have realised there is a lot of negative attitude towards [disabled] persons with HIV. When I report there, they serve those able-bodied people first and then I come last. Sometimes I put them under pressure, but when I relax, they can forget me," Odede says of the service at Soroti hospital, where he regularly gets septrin tablets.
According to Robert Odongo, programme assistant at Soroti District Union of Persons with Disabilities (Sodipu), the disabled often find it harder to access services on HIV than the able-bodied. Blind people will, for instance, not see all those billboards about HIV; the deaf will not pick the radio and TV messages - unless a special effort is made to integrate sign language.
And when there are meetings about HIV or other health issues, it is rare for the blind and the deaf, for instance, to be specifically invited, never mind facilitated to participate effectively. Odede is only thankful that little Grace and her brother can push him to the hospital - at least for now.
"Sometimes we find it difficult even to visit the clinic because of our movement," he says. "I wish the government could put emphasis on persons with disability with some people to serve them from their homes."
In a recent article for The Observer, Joseph Malinga, who speaks for the National Union of Disabled Persons of Uganda (Nudipu), brought out another dimension of the problem of HIV and disability. Many service providers, he argued, do not consider the disabled when designing HIV-control interventions. In part, this is because of a stereotyped view of disabled persons.
"Another misconception is that PWDs are asexual. While adolescents with disabilities are not strangers to social isolation, they are by no means any less sexually active than their able-bodied counterparts," Malinga wrote. "In fact in some cases, disabled youth have had double the rates of sexually transmitted diseases."
According to Sodipu's John Robert Odongo, HIV among the disabled is fuelled by cynical stereotypes not least among able-bodied men. Many men, he says, think that disabled women are not that sexually active and therefore pose a lower risk of HIV. These men will not want to be seen with disabled women, but at night, they sneak into their homes for sexual gratification.
"The way men take women with disabilities, as women who are not to be married, is a problem," Odongo says. "They pop in and go off, leaving disabled women with multiple sexual partners and at a higher risk of HIV."
Efforts to speak to officials at the Uganda Aids Commission were futile, as they did not return our calls by press time. However, Health Minister Christine Ondoa admits that rates of HIV infection are significant among the disabled, as they are among the vulnerable populations in the country, who need particular attention in HIV programming.
"In our National HIV Prevention Strategy which we launched last year, we have taken care of all those groups," the minister said yesterday.
However, while there is a lot of attention to vulnerable groups in the strategy, the document does not make a single reference to disability. For Nudipu, this exactly, is part of the problem; disabled persons who are living with HIV, like Odede, need tailored interventions.
This Observer series was prepared with support from the National Union of Disabled Persons of Uganda (Nudipu).