Zambian positive attitudes

While being deaf and HIV-positive can be a frustrating and isolating experience, Susan Mshoka believes that’s not to say you can’t live a positive life

I am 36 years old and live in Petauke, Eastern Province Zambia. I am deaf and HIV-positive.

I lost my hearing as a result of a severe case of meningitis during my childhood. Growing up and not being able to communicate was difficult, but I continued to try and live a normal life. I have two children, aged 15 and 12. Their father, my first husband, passed away in 1998. It was not long after I remarried that I fell ill. I started to get headaches, lose weight and developed tonsillitis. After an operation on the right side of my jaw due to my tonsillitis I was encouraged to go for voluntary testing and counselling. It took a lot of persuasion to get my husband to go with me. When we were both told that we were HIV-positive I was very sad and disturbed. I thought it was the end of me.

To help me come to terms with my condition I drew on the support of counsellors and people living with HIV and AIDS, but it was difficult to find the help that I needed because I was struggling to communicate. There are very few HIV/AIDS counsellors and healthcare workers that are trained in sign language and I can’t afford to hire an interpreter. This made discussing my problem that much harder, and visits to the hospital and clinic became difficult as I had to write everything down. In 2004 my health began to deteriorate rapidly. I was unable to continue working and with two children to support money became a problem. Not knowing who to turn to, it was in my role as chairperson for the deaf women’s wing of the Zambia National Association of the Deaf that I heard about the Zambian Federation of Disability Organisations (ZAFOD).

ZAFOD is a Zambian based civil society organisation that is working to ensure that disabled people are not excluded from HIV and AIDS services that should be open to all. They enrolled me onto an HIV/AIDS awareness training programme which helped me to accept my status by teaching me about HIV/AIDS and living with a disability. As part of the support received from ZAFOD, I was also given access to antiretroviral therapy which made me healthy enough to return to work, and to help supplement my income I was given the opportunity to take part in a new income generating project. The project involved me supplying payphones to local communities where there was no access to telephones and I used the profit I made to support my children.

I know that the skills and contacts I have developed through the support of ZAFOD will stay with me forever. I feel lucky that the training I received has allowed me to pass on my knowledge to help others. I now volunteer at a school for deaf children in Petauke to help raise awareness about HIV/AIDS issues, and my hope for the future is that I am able to become a full-time teacher. When I get the opportunity I also attend workshops in Zambia and the region to tell my story, so that people realise that being disabled and HIV-positive does not mean you can’t live a positive life.

I still worry about how I will be able to support my children, especially now as they are getting older. Unfortunately the payphone business that I was involved in was no longer sustainable but I know that the financial management and business skills that it helped me to develop will be beneficial in the future.

INFORMATION

The UK Department for International Development (DfID) provided support to ZAFOD through its five-year £20 million HIV/AIDS programme: Strengthening the AIDS Response, Zambia (STARZ). The money was channelled through the Zambia National AIDS Network which provides a grant-making facility to civil organisations working on HIV and AIDS issues. The STARZ programme came to an end in September 2009 and some of its successes have been documented in the short film ‘A Shared Future’ http://www.youtube.com/watch?v=OmZddSanMKI produced by HLSP, who also managed the STARZ programme on behalf of DfID.