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 Monday 13 July 2009
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Mary Muthoni, "Disabled people living with HIV face so many challenges"
December 2008 (PlusNews)

Photo: Helen Blakesly/IRIN
Mary Muthoni is living with HIV and a disability
DAKAR, Mary Muthoni is physically handicapped and gets around on crutches. She talked to IRIN/PlusNews at the 15th International Conference on AIDS and STIs in Africa (ICASA) taking place in Dakar, Senegal, about the triple stigma she has experienced.

"I learnt of my [HIV] status in 2000. I didn't want to be tested really, but I'd fallen sick and the doctors didn't know what was wrong with me.

"I was counselled, but I still didn't accept my status. I refused all treatment, and in my mind the only option I had was to commit suicide. I thought, 'Here I am, disabled, a woman, a mother, and now HIV positive. How would society take me?'

"The hospital called my mother [without my permission] to tell her my status. She then told everyone back home and when I arrived, the atmosphere was hostile. My siblings didn't react well; at meal times, if one of them cooked, they would give food to everybody else, but I was left out. My mother did help me, but if she was out at work, often I'd be ill in bed with nobody even to bring me a cup of water.

"I had a lot of problems back then, but the biggest problem was within myself; suicide was still in my mind. But, in time, I realised I had to swallow the bitter pill. Slowly, I came to accept my status; I became empowered. I was able to receive treatment and to go out and talk about being HIV positive.

"What I face is a triple stigma. I'm disabled, and many people in Africa see that as being a burden to society. I'm a woman, and am seen as the weaker sex, which doesn't often have a voice here. And I'm HIV positive, with all the issues that brings.

"But I'm able to fight these stigmas. I've now got knowledge about HIV and that means I have power. I've been able to change people's attitudes to my situation by talking to them about it.

"People tend to assume that as a disabled person I don't have sexual desires, that I'm asexual. It shocks them that I am HIV positive. I explain to them that I still have the desires of every other human being.

"Disabled people living with HIV/AIDS face so many challenges; getting the treatment they need can be difficult. A visually impaired person, for example, needs leading by someone so, for that person, there's no anonymity or confidentiality about their status.

"All too often, staff talk to the person leading them and not the patient. Deaf people need a sign language interpreter, so they have no confidentiality either.

"Sexual abuse is a terrible reality for disabled people. They are targeted because they are the easiest prey - that's often how they become HIV positive.

"Poverty is a problem too; getting a job is so hard. So if some disabled person is on the streets begging, if he sees an opportunity to earn money [doing sex work] he most likely will do it. The illness is spreading within the disabled community.

"One of the biggest challenges we face, though, is being excluded. We're put under the section of 'vulnerable groups' in prevention programmes and meetings. But when those groups are talked about, disabled people aren't specifically addressed. If we were, I think HIV prevalence rates would go down."


See also: BURUNDI: HIV policy ignores the disabled


[The above testimony is provided by IRIN, a humanitarian news service, but may not necessarily reflect the views of the United Nations.]

IRIN welcomes editorial and photographic submissions for inclusion on this page, reserving the right to select and edit as appropriate.
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This material comes to you via IRIN, the humanitarian news and analysis service of the UN Office for the Coordination of Humanitarian Affairs. The opinions expressed do not necessarily reflect those of the United Nations or its Member States. Republication is subject to terms and conditions as set out in the IRIN copyright page.