Rwanda: “I change the way people see disability and AIDS”

© Handicap International

“My name is Donatille. I’m 45. I have a visual disability and I’m HIV positive.” This is how Donatille, who works as an educator for Handicap International, introduces herself. Rejected by her own family, Donatille uses her work to change the way people see disabled people with HIV.

Donatille Mukarukundo was born in Gisozi, Rwanda. She had a traditional marriage in 1985 and soon gave birth to two children. In 1989, her husband died after a long stay in hospital. In 1990, her second child, then aged two, also fell ill before dying a few months later. The doctors explained neither the cause of the child’s death, nor that of her husband. Her family told her that they had been poisoned or “bewitched” by neighbours.

Back then, no one talked about HIV/AIDS in Donatille’s community: “I’d never thought about testing for HIV after my husband died because I was well and I felt fine.”

In 1994, Donatille began to have problems with her sight and saw several ophthalmologists. She was treated but eventually, over summer, a doctor told her she had an incurable illness and would go blind very quickly.

When she lost her sight, Donatille felt humiliated by her family, particularly her sister, who told her that she had become “incapable of helping her family ever again”. During those first years, when she had to learn to live with her disability, she felt alone, desperate and hopeless.

One day, a friend told her about an organisation called “Rwandan aid for people with visual disabilities”. This organisation welcomed her and placed her on a training programme to promote the social inclusion of people with visual disabilities. She learned how to grow food, wash herself, and iron clothes, among other things.

After this training, Donatille felt good about herself again. These new activities allowed her to take control of her disability.
In 1999, she was treated for tuberculosis, although no one made a link between her illness and the death of her husband and child. The doctors did not suggest she take an HIV test.

It was only in 2004 that Donatille took a voluntary test after attending a community awareness session. That’s when she learned she was HIV positive. Despite this news, she still didn’t begin an antiretroviral treatment. The staff at the health centre discouraged her because they felt she wouldn’t be able to take the drugs without help from other people.

Her relationship with her family went from bad to worse when she told them she was HIV positive. They rejected Donatille because she had “behaved badly”. Her family even refused to eat with her because they were afraid of catching the disease. “They gave me a separate saucepan, and I had my own cup and plate.”

“It drove me to despair, I hated my life. For two years, I felt totally hopeless. Over and over again, I wondered when, where and how I caught the disease.”

Eventually, in 2009, she joined the “Rwanda women’s network”, an organisation that provides advice to women with HIV. She took part in several discussion groups. Despite being the only disabled woman, she was fully included in their activities. She started to enjoy life again and felt less lonely. This was when she came across the teams working for Handicap International and its partners.

Thanks to Handicap International’s “Disability and HIV” project, she has been trained as a community worker to raise awareness of HIV among other people with disabilities. This has enabled her to meet other people and talk about her experiences: “I’m proud I’ve raised the awareness of so many people. They take the test and know their HIV status.” Donatille feels she has helped change the way her community sees disability and HIV.

As everyone who knows her agrees, she is skilled, energetic and courageous, and performs her awareness work with absolute conviction.

She has even decided to care for two AIDS orphans, who are themselves HIV positive. They go to school and Donatille looks after their welfare. On 8 September 2011, Donatille married again to a man who is disabled and HIV positive, like herself, and has set up a small pig farm that, she says, will enable them to “pay our health insurance for the coming year”.

Obviously, she still faces a number of problems. She doesn’t have any fields to farm and does not have a home. Sometimes she finds it hard to pay her children’s school fees. But, she concludes, smiling from ear to ear, “I follow my treatment every day, without fail, and I’m confident the future will be better for my family.”

* The aim of Handicap International’s “Disability and HIV” project is to improve access for people with disabilities to HIV/AIDS prevention and gender-based violence services, by training of professionals and community volunteers, building the capacities of partner organisations, performing local and national advocacy work, raising the awareness of people with disabilities and other members of the community, setting up self-help groups, and more. Handicap International works in the districts of Gasabo, Nyarungenge, Kicukiro, Rutsiro and Rubavu.