Rebecca Scherpelz (Uganda)

Rebecca Scherpelz (Gulu Disabled Persons Union – GDPU): Rebecca is from Indianapolis, Indiana. She graduated in 2008 from Butler University with an undergraduate degree in International Studies and Anthropology/History. During her studies Rebecca led service trips to Uganda, where she lived and volunteered in Gulu and Kampala. Prior to her AP fellowship Rebecca spent over two years working with Best Buddies, an international non-profit that supports people with intellectual and developmental disabilities. After her fellowship Rebecca wrote: “I think I found what I want to do long-term. I’d like to go into a long-term career of recipient-donor relations, empowering recipients to speak up for what they need the most... It really made me think about what we give, from dollars to second-hand things, and how recipient organizations deserve the very best…not just leftovers.”

PWD are immune to HIV/AIDS…?????

23 Jul

It is no secret that there is a high prevalence of HIV/AIDS in Sub-Saharan Africa, as “An estimated 22.5 million ( people are living with HIV in the region – around two thirds of the global total.” Fortunately, people with disabilities (PWDs) are immune to HIV/AIDS, so HIV/AIDS awareness, education, and prevention is not applicable to them. The end.


In the 5+ weeks that I’ve spent with GDPU, a continuous concern and theme is the lack of support for PWD, specifically when it comes to HIV/AIDS awareness. In four districts covered by Nudipu’s ( 2010 baseline survey, an average of 61.5% of respondents – primarily females – had NEVER received HIV/AIDS services! Though some reports ( celebrate Uganda’s efforts in HIV/AIDS prevention (thumbs up!!), Gulu district remains a risk factor ( as numbers surged from 9.4% (2008) to 16% (2009). Gulu Municipality rates as high as 22.1%! Statistics like these plus the disparity in HIV/AIDS awareness for PWD increases the risk for ALL of Gulu. So why the void?

Logistically speaking, HIV/AIDS training isn’t accessible to PWD: training centers are not physically accessible to people with mobility issues; education materials are not available in Braille for people with visual impairments; educators and health care workers do not speak sign language to communicate with people who are deaf, etc. How does a person who is blind know that a condom is expired if it is not marked in Braille? How does a person who is deaf know that free condoms are available at the local health center if it was a radio broadcast?

While these issues of inaccessibility are disturbing and undoubtedly deserve attention, there is a relatively straightforward solution to train and sensitize HIV/AIDS educators on proper communication techniques to support these populations. GDPU is focusing on education, advocacy, training, and lobbying to help combat these issues, and slowly but surely, there is progress (stay tuned for a report from yesterday’s National Debating Competition on HIV/AIDS, featuring four Gulu primary schools. The theme: “HIV/AIDS doesn’t discriminate; people and services do!”).

Still, the deeper concern lies with the degree of ignorance that is caught up in misconceptions, myths, and abusive treatment towards PWD, especially in regards to sex as a way of transmitting and contracting HIV. For instance:
➢ Misconception: “PWD are not sexually active, so Disabled Person A couldn’t have HIV.”
➢ Misconception: “PWD cannot and SHOULD NOT have children. How will they raise them?” PWD often experience ridicule if they are pregnant, as people scorn them . Without supportive health care workers, PWD may avoid going to health centers for information at all.
➢ Myth: “PWD are immune to HIV/AIDS. In fact, having sex with a PWD can cure me!”
➢ Abuse: In some cases, their social isolation makes them targets for “casual” sex. A PWD might think, “Well, this person wants to have sex with me; there may not be another person who comes along.” In one case surveyed by NUDIPU, an HIV+ woman infected a total of 50 people when 25 married men engaged in unprotected sex with her, consequently infecting their wives. While some responsibility lies with the woman, the greater concern were the 25 men who abused her vulnerable situation under the auspices that (a) she is immune and (b) she would be lucky to have them.
➢ Abuse: Mobility and/or communication barriers make PWDs a vulnerable target for rape and sexual abuse, as they may have difficulty escaping, alerting, or reporting an attack.

The reality is that PWD have all of the same desires, interests, and rights as someone without a disability. They want to have sex. They DO have sex. They – like everybody – deserve to know about the risks of unprotected sex, especially in regards to HIV/AIDS. They – like everybody – are susceptible to contracting HIV in all of the same manners, sexual or otherwise. And above all else, they – like everybody – have ownership and agency over their bodies, including the right to say “NO!”.

Those who take on the important role of educating the community on HIV/AIDS also must take responsibility for making that information accessible: host the session in a building with a ramp; hire a sign language interpreter; provide materials in Braille; etc. Additionally, HIV/AIDS awareness should address the fact that PWD share the same desires, wants, risks, and RIGHTS as any other person. Otherwise, why host a training at all if you are going to (a) exclude a sexually active portion of the community that may – out of ignorance – practice risky sexual behavior; and (b) perpetuate the perspective among the non-disabled community that PWD don’t need the information.

The solution is two-fold. Education and empowerment:
➢ Education for PWD to understand the nature of HIV/AIDS;
➢ Education for the community that HIV/AIDS does not discriminate;
➢ Empowerment for PWD to know, understand, and practice their rights.

Posted By Rebecca Scherpelz (Uganda)

Posted Jul 23rd, 2011

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