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Ignoring the facts on AIDS and disability

Fisiwe Malinga, 12, scratches her grandmother Zodwa Malinga's head. Wheelchair-bound after a stroke, she is unable to do anything for herself. Yet, six grandchildren are staying here with her. Several of them are orphans due to HIV/Aids and the rest were Eva-Lotta Jansson/IRIN/Red Cross
The exclusion of disabled people living with HIV in Africa is so entrenched that they were even marginalised at the latest international conference on the disease, according to disabled rights activists.

Rights groups claim that many of their members were shut out of the opening ceremony of the 15th International Conference on AIDS and Sexually Transmitted Infections in Africa (ICASA) held in Dakar, Senegal, last week, because they could not access the room. The only entrance to the amphitheatre that did not have stairs was reserved for the President of Senegal.

"Our members in wheelchairs or on crutches just couldn’t get in. We went to see the guards but were told to go away," Hendrietta Bogopane Zulu from The Africa Campaign on Disability and HIV & AIDS, an umbrella group that lobbies for equal access to HIV information and services, told IRIN/PlusNews.

Overlooked

Africa has an estimated 80 million disabled people - around 10 percent of each country’s population, according to a 2004 survey by the World Bank - but disabled people have largely been left out of responses to the epidemic.

"Even at this conference, in the meetings and discussions, when they talk about ‘vulnerable groups’ they talk about prisoners, MSM [men who have sex with men] and sex workers ... everyone but disabled people," said Bogopane Zulu.

Part of the problem is knowing just how many disabled people are living with HIV. "There’s a real lack of statistics about the prevalence [of HIV] among disabled people," she said. "No one asks the right questions; they don’t think to note down that he or she is handicapped when they’re collecting data."

The Global Survey on Disability and HIV/AIDS, conducted by Yale University and the World Bank in 2004, found that individuals with disabilities were often excluded from HIV prevention efforts because it was assumed they were not sexually active, and therefore at little risk of infection.

Mary Muthoni from Kenya, who is physically handicapped and HIV positive, is accustomed to people expressing shock when she tells them her status. "People tend to assume that as a disabled person I don’t have sexual desires, that I’m asexual ... I explain to them that I still have the desires of every other human being."

''People tend to assume that as a disabled person I don't have sexual desires, that I'm asexual...I explain to them that I still have the desires of every other human being''
The World Bank survey found that disabled people had "equal or greater exposure to all known risk factors for HIV infection" than able-bodied people, and were just as likely to be sexually active, to be homosexual or bisexual, and to use drugs and alcohol.

They were also three times more likely to be victims of sexual violence, and to experience physical, sexual and emotional abuse than people without disabilities.

"Sexual abuse is a terrible reality for disabled people," Muthoni said. "They are targeted because they are vulnerable; they are the easiest prey - that’s often how they become HIV positive."

Besides their physical vulnerability, disabled people are also victims of practices such as "virginity cleansing" – the belief that having sex with a virgin can cure an HIV infection.

Poverty is another factor that predisposes disabled people to HIV. The World Bank estimates that people with disabilities make up 20 percent of the world’s poor due to their lack of education and employment opportunities. The need to secure an income can contribute to risky sexual behaviour like sex work or staying in an abusive relationship.

Lack of money can also act as a barrier to receiving HIV/AIDS treatment. The need for a carer to accompany a disabled person to a health centre doubles the cost of transport and may be unaffordable on a regular basis.

Information gap

Disabled people are also more vulnerable to HIV infection because of their poor access to prevention information and treatment. According to The Africa Campaign on Disability and HIV & AIDS, only about two percent of disabled children in Africa receive a formal education that would allow them to be exposed to school-led HIV/AIDS programmes.

The resulting low literacy rates among disabled people, combined with the difficulty those with hearing, visual or intellectual impairments experience accessing mass media messages, reduces their chances of learning how to protect themselves from HIV even more.

"In a demonstration about how to use condoms, the condom is sometimes put on the finger. If a deaf person hasn’t got a sign language interpreter, they may think a condom is worn on their finger! I’ve heard of this happening," Muthoni commented.

Nothing about us ... without us

Citing the universal slogan of the disability movement - "Nothing about us ... without us" – disabled rights activists at ICASA called for greater inclusion.

Read more:
 "Disabled people living with HIV face so many challenges"
 Disabled in the north missing out on HIV services
 HIV policy ignores the disabled
 Disability is much more than a physical constraint
Bogopane Zulu argued that disabled people should be at the centre of HIV/AIDS prevention and treatment efforts. "We need to recruit disabled people right from the beginning of decision making on programmes," she said.

"While there’s still a lack of planning and resources, while there are still no sign-language interpreters, clinics with only stairs, and no blind-friendly leaflets, we will remain excluded."

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This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions

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