Julie’s Story: The ‘double curse’ of being disabled and HIV-positive

Julie’s Story: The ‘double curse’ of being disabled and HIV-positive

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Julie’s Story: The ‘double curse’ of being disabled and HIV-positive

Written by Nancy Fulwiler, Centers for Disease Control-Rwanda

Julie's Story

Julie is a 45-year-old mother in Rwanda with one medical condition that’s easy to spot. She is blind. She uses a cane and large sunglasses cover her eyes.

Her other medical issue is less obvious – she is HIV positive.

They are distinct and separate problems. But in Rwanda, blindness as well as other disabilities stand as a stubborn barriers to treatment and even information about HIV.

Julie knows.

“For many years, I was married and I knew my HIV status – and it troubled me a lot,” she said.  “I hated myself so much. Also, people used to talk about me, wondering who infected a blind woman, and I would feel ashamed to mix with people. I had a double curse of being blind and HIV-positive.”

That “double curse” has finally been acknowledged. A consortium of interests with funding from PEPFAR CDC/Health Resources and Services Administration have joined together  to create programs specifically tailored to helping disabled people like Julie who are also HIV positive.

Though the precise size of this group has yet to be determined, we do know that it has long been marginalized. The new program, “Strengthening Communities to Integrate People with Disabilities in the National HIV & AIDS Response in Rwanda,” is working to reverse that history and provide equitable access to HIV prevention, care, and treatment to people with disabilities.

The program, which is being coordinated by the Nobel Prize-winning nonprofit Handicap International, relies on “peer educators” to find, counsel and help patients get the care they need.

In short, it relies on people like Julie.

A Handicap International health worker with a family in Ethiopia. Photo credit: Molly-Feltner/ Handicap International.

Julie received HIV services through the CDC/HRSA project and was later trained as a peer educator by the Rwanda Union of the Blind (RUB) and Handicap International.

While in training as a peer educator, Julie learned about ways to prevent mother-to-child HIV transmission. That knowledge had a personal – and dramatic – effect.

“I decided to have a child, took all the prevention medicines given at the health center, and I now have a beautiful child who is not HIV positive. I am doing well also with my small business,” she said.

So is the program. More than 1,200 people with disabilities who are infected and/or affected by HIV have been helped so far.

A prime reason for its success is the focus on peer education; using people like Julie as frontline workers dispensing information, services and care. Peer education has played a key role in linking people with disabilities to HIV services such as voluntary counseling and testing, preventing mother-to-child transmissions, and social support groups.

The approach has increased participation from people with disabilities while reducing the stigma. The interaction is based on strategies that reduce discrimination, promote positive living, strengthen civil society, and emphasize the benefits of accepting disabled people as part of regular, mainstream everyday life.

Participants themselves reap benefits in some unexpected ways. Just ask Julie.

“I developed self-esteem. I was encouraged by other people in the same group,” she said. “I started teaching other blind people and felt good and worth about myself. I went for more counseling sessions and I am a peer counselor encouraging other people with disabilities to seek service.”

Learn more about Handicap International’s work here.


Julie’s Story: The ‘double curse’ of being disabled and HIV-positive

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