Already blind, Catherine Mwayonga was written off by doctors as having six months to live after being diagnosed with HIV. Fifteen years later, she now helps other disabled HIV-positive Kenyans to demand better treatment and adapt to life with the disease.
When a visitor walks up the stony path to Catherine Mwayonga’s home in Thika, 30 minutes from the Kenyan capital, she hears their footsteps and raises her voice – bold and husky – to usher them in. She’s sitting on the sofa, knitting a sweater for a newborn baby and counting the stitches with her fingers. “Karibu sana (welcome),” she says.
Mwayonga, 62, the mother of six grown boys and two adopted daughters, is blind. She lost her eyesight when she was 7, after a cow kicked her in the head and threw her against a tree. She is also HIV-positive, which she only discovered when she overheard a doctor talking about her to his colleagues: “The patient on bed 12 is HIV-positive.”
Mwayonga remembers hearing him announce her status as she lay still on the cold bed, pretending to be asleep. “He said it in English, assuming that I did not understand,” she says. “It shocked me.”
That moment led to years of fear, denial and confusion as Mwayonga’s disability – one that had long ago become a natural part of her full life – suddenly became an impediment to coping with her illness. Everything from getting information from doctors to taking medication was a struggle. But 15 years on, Mwayonga has overcome those challenges and now devotes her time to advocating for HIV-positive people with disabilities, calling for more respect and improved resources.
The first case of HIV was discovered in Kenya in 1984, and the country’s infection rate currently stands at 5.6 percent. Figures from the Kenya National HIV and Aids Estimates shows it has the fourth highest HIV prevalence in the world, with about 1.6 million people infected with the virus.
For two years before her diagnosis, Mwayonga had pleaded with doctors to test her for HIV/AIDS. In 1996, after a decade of illness, her husband died from what Mwayonga later discovered were AIDS-related complications. She knew the risk of her having contracted HIV from him was high. “In 1999, I would have malaria today, typhoid tomorrow, but nothing specific,” she says. “I would ask why they were not testing me for HIV/AIDS. They would say the disease would not get [disabled] people like me. But I asked them: Aren’t I a human being?”
By the end of 2000, Mwayonga was ill more often than not. She had been teaching at the Thika Primary School for the Blind for 40 years, but now could only make it to work one month out of every three. “When I started vomiting, losing weight and having diarrhea, the doctors said my body was overproducing bile and I was put on ulcer medication.”
In March 2001, Mwayonga started having breathing difficulties and was rushed to hospital, where doctors told her she needed a blood transfusion. When the lab technician came to her bed to draw her blood, “I told him, I hope you will test me for HIV with that blood sample,” she says.
“Who told you about HIV/AIDS?” he asked her. That was the last she heard about her illness until the doctor announced her status as she pretended to sleep.
The poor handling of her situation continued, she says, when a doctor finally broke the news to her personally. He told her she had only six months to live, that she should sell her property and distribute her money to her family.
Devastated, “I told them it was very unprofessional how they were handling my case and how they had given my life an end,” she says. Some other doctors assured her that with the right diet and treatment, she could live with the disease for many more years. But she was never given or offered counseling to help her deal with her new, life-changing health status, nor given any tips on how to disclose the news to her family.
Instead, when she was discharged from hospital, she was handed an array of drugs to take daily. Because the antiretrovirals (ARVs) are not marked in Braille, she would often get her medication mixed up. “Every day, I felt tired and sleepy,” she says. “I was overdosing on the drugs. I had muscle wasting.”
This episode of her life, which she describes as a near-death experience, prompted her to share her status publicly in 2010. “Having HIV when you are disabled is a double dilemma,” she says. “Your privacy is infringed, your status is made public, and accessing and using ARVs is a hurdle. It is a major jungle for disabled HIV patients.”
There are places in Kenya, such as the Disabilities Programme at Liverpool VCT, an NGO where people with disabilities can access HIV testing and counseling services and get help from service providers specifically trained to work with the disabled. But there are very few facilities like this catering to disabled HIV patients.
So when Mwayonga isn’t teaching at the school, she devotes her time to filling that healthcare gap. As the head of the Thika branch of the Kenya Network of Positive Teachers (KENEPOTE), an organization of teachers living with HIV/AIDS, she helps organize regular outreach events to dispel myths on HIV, fight stigma and call for better inclusion of people living with the virus. She counsels elderly people on how best to break the news of their HIV-positive status to their children and grandchildren. She visits high schools to give talks on HIV prevention and treatment. And she opens up her home to anyone looking for help or advice on reproductive health.
But even simple advice like “use a condom” comes with complications. “When you tell a blind couple or someone visually impaired to use condoms, it is like an insult,” she says. “Because the packaging and instructions are only meant for those with sight. They wouldn’t know if the condom has expired, where to open it, and may not wear it correctly.”
Ultimately, Mwayonga wants the Kenyan government to pass legislation obliging manufacturers to put Braille, as well as large-sized letters, on condoms and packages of ARVs. She says all HIV testing centers should have a counselor who knows sign language to serve deaf clients and ensure their confidentiality.
In 2011, Mwayonga was among 15 women recognized by the National AIDS Control Council and the Network of People Living with HIV in Kenya (Nephak) for their championing for the rights of women living with HIV in Kenya.
“The disabled can also get HIV,” she says, stressing the importance of including the disabled in any policies or programs designed to tackle HIV prevalence in Kenya. “We cannot be left out.”