Disability is not inability
She believes that being disabled does not limit one to attain their goals in life. Little by little Mary chapo Blind and HIV positive is slowly turning into an activist. She is determined to raise awareness on challenges facing persons with disability living with HIV and AIDS. Eight years ago she started taking ARVs and five years later she lost her sight yet this has not stopped her from speaking for the blind.
Chapo a widow lives in Kamwala Township south of the capital Lusaka. She stays with her parents and two children. She has learnt to use a stick as her guiding tool each time she takes a walk. Her children a boy (16) and a girl (12) are very supportive and assist her to catch a bus early in the morning on her way to school, where she is learning how to read through Braille at Zambia national library for the blind.
39 years ago Mary was born, a normal child like any other baby. Growing up with her parents, she could play; go to school, ready with her own eyes. At age 20 she got married and had two beautiful children. Chapo had no idea that at one point in her life she could loss her sight and be numbered among the disabled persons in Zambia.
“I have failed to understand why I lost my sight” She says
Chapo is one of the very few HIV positive women with a disability who can speak public about the vulnerabilities surrounding disability and HIV. Being blind has not stopped this middle-aged woman from opening up in pursuing her passion for the blind and children. Persons with disabilities living with HIV and AIDS face a lot of challenges including stigma and discrimination.
At first chapo admits that it was difficulty for her to reveal her status but now she is free.
“I have a free mind and have supportive family” she says.
When its time to take her ARVS she calls her daughter who pass a bottle of drugs to her put in a bag hanging by the wall in her bedroom. One could mistake her open eyes to be visible when in the actual sense they are not.
“At the hospital I was told my blindness came as a result of the TB drugs that I earlier took before starting the ARVs, but am not satisfied with the information I was given” says Chapo
In her desperate search for help, Chapo was approached by a man working for an organization in Canada. The man promised her a house if she allowed him to write about her and take 21 photos of her.
“He took 21 photos of me, wrote a story about me and published it on the internet, promising to buy me a house”. The promise that was made to her has been fruitless as the man has not been seen since then”.
Persons’ with disabilities living with HIV are left out in so many areas affecting them. In most cases women are taken advantaged of and do not get the help they need says chapo. It is from this background of vulnerability that has prompted chapo to start organizing the formation of an organization known as Zambian national. women of the blind.
2.7 percent of Zambian population is disabled. People with disabilities are extremely vulnerable to HIV and AIDS because of activity limitations. There are no available disability specific HIV and AIDS interventions and statistics showing the demography of individuals living with HIV/ AIDS. In addition people with disabilities are excluded from IEC materials and other underlying interventions (Disability HIV and AIDS trust).
The lack of information and statistics on the needs of people with disabilities by HIV service providers and policy makers here has lead to the exclusion of persons with disabilities in many HIV and AIDS intervention program.
Elijah Ngwela (blind) director for Zambia disability HIV and AIDS, human rights program (ZAHRP) is one of the few persons with disabilities who has made a positive contribution to awareness raising on persons with disabilities living with HIV. Ngwela says persons with disability in particular blind people face a lot of challenges such as low literate rates; Bind people can not read and are unable to understand HIV issues, for instance the correct use of a condom. Blind women are victims of rape because of their status in society and luck self esteem.
“Persons with Disabilities have difficulties in accessing health systems; blind people can not read instruction on condom use and leaflets on HIV and AID. Disabled people’s organizations do not get the necessary funding” says Ngwale.
Chapo who is in the processing of registering an organization also wants to form a support group of blind women living with HIV and Aids. She says, though she has found other blind people who are HIV positive to be come members of a support group, they are still holding back because of self stigma.
The pupil in her eyes slightly turning blue, Chapo does not believe in begging on the streets. She believes that if given the tools disabled people can do it. Though Jobless she is able to support her children in some way as she is a business woman. She does not have an income but use workshops allowances and money donated by well wishers to sell some bed shirts her friends buys for her from south Africa.
“Many blind women line up on the streets to ask for help and nothing is been done to address such issues” she says.
Lending by example as a business woman, once her organization is registered, Chapo wants to empower blind women with skills to help sustain their lives. She is working with different organization such as heifer and a pastor to ensure that her organization becomes a reality.
“I want to help blind women understand their rights and help vulnerable children because I understand what they are going through” she says