August 2010

In July, CBM’s Monitoring and Evaluation Officer, Ijeoma Obidegwu, traveled to Vienna for the 18^th Annual International HIV/AIDS Conference and to attend the Disability Networking Space. The space was designed to highlight the devastating impact of HIV on persons with disabilities around the world and the need for the inclusion of persons with disabilities in all HIV outreach efforts. She spent time helping Specioza Mwankina, an HIV-positive Tanzanian woman who also has a disability, present her story to the international community. Specioza formed the Network for Disabled People Living with HIV/AIDS (NEDIPHA+) and is now a powerful advocate for HIV/AIDS education for people with disabilities. Her organization has benefited from CBM’s services through a joint partnership with the CBM-supported Comprehensive Community Based Rehabilitation in Tanzania (CCBRT). She sat on a panel discussion focused on AIDS and Disability at the country level with government representatives and academics to share her personal story.

Here, in her words, is Specioza’s story…

 

My name is Specioza Joseph Mwankina, and I am an HIV-positive physically disabled Tanzanian woman and a rape survivor. I have been living with HIV since 2003. When I was two years old, I became very sick, and my mother thought I had malaria. She took me to the hospital and I received two injections. After receiving these injections, I was not able to crawl or sit properly. At twenty-four, I went to Kenya to get an operation on my right leg. The doctor told me that I had polio when I was younger and that, not malaria, was the cause of my disability.

I came home to recover from my surgery, and I had very little physical mobility. It was during that time that I was raped by a family friend. I did not alert the authorities. In 2001, I started noticing that I would get bouts of malaria before and after my period. In 2002, I found out that I had fibroids and needed to get an operation to have them removed. In 2003, I scheduled an operation to have them removed. During this time I was working for a telecom company selling phone cards and other services. Before getting the operation, I went with a co-worker to a VCT clinic to get an HIV test. It was there I discovered I was HIV positive.

I found out later that I was infected through the family friend who raped me.

I disclosed my status to a fellow staff member. The staff member disclosed my status to other staff members without my permission. Within a short time, a lot of people in my workplace knew that I was HIV positive because they started mocking me and saying that people who are HIV positive need to be excluded from other people and be kept in their own separate place. I was not allowed to touch papers from other people’s desk. Often, I was suspended from work without pay without much notice.

With this type of stigmatization, I resigned from working in the telecom company to work as a full-time staff member with a Disabled Person Organization (DPO) because I thought I would get love and peace by working with my fellow disabled people. But when the director of this other organization realized that I was HIV positive, he started discriminating against me. He took all my working files out of my office. He started outsourcing my work to other people within the organization. Then I was idle once again. This situation went on for six months, and I fell in and out of various illnesses.

I was given sick leave, but by the third month I was terminated on medical grounds. They promised to give me a small amount of money to start a small business upon my recovery. However, they did not fulfill their promise nor was I given any severance pay. I wanted to commit suicide, but my parents helped me pull through. My younger sister came to live with me to offer care and support.

After I left the DPO, I joined Mbagala Positive club, but there was no person with a disability who was a member. I started searching, and I met three people who are HIV positive. I encouraged these individuals to join the Mbagala Positive Club.

With these three people, I started the Network for Disabled People Living with HIV/AIDS (NEDIPHA+).  The goal of this organization is to mobilize disabled persons to use counseling and testing services and to provide HIV awareness to people with disabilities. I am still continuing with my role as community worker and creating awareness in schools, offices and in public places about the prevention of HIV transmission as well as the care and support needed to address stigma and discrimination through radio and television ads. I am also working to create awareness about HIV/AIDS and disability.

Through my work as a community advocate, I was involved as a researcher on a document put together by the Tanzania Commission on HIV/AIDS called “The Forgotten,” which provided an analysis of HIV and Disability in Tanzania. This research provided the basis for a project implemented by CBM-US and the Comprehensive Community Based Rehabilitation in Tanzania (CCBRT) called “Making HIV/AIDS Strategies Inclusive of People with Disabilities in Tanzania.” Our organization collaborates with this project by receiving referrals of HIV positive individuals and by using the education materials developed by them. Most recently, CBM-US and CCBRT sponsored my participation in the 18^th Annual International HIV/AIDS Conference in Vienna where I provided a Tanzanian perspective on AIDS and Disabilities.

Thank you,

Specioza Joseph Mwankina