Stigma is a reality that Agnes Njakurwa faces nearly every day in her community in Same, a town in northeastern Tanzania. A mother of four, Agnes, and her family face compounding stigmas of disability, poverty, and HIV status.
Agnes has an adolescent son who is now living with relatives in Moshi, where he is a student. Her oldest daughter, Neema, 15, lives with her along with two younger daughters, an 8-year-old and a 1-year-old. Neema’s father suffered from alcoholism and left the family, subsequently passing away—leaving Agnes as both breadwinner and caretaker. She has since found another partner, but he, too, lacks financial resources.
Neema is living with a developmental disability. She is loving and engages well with her family but has limited mobility and unique communication needs. Agnes is an excellent caregiver. However, Neema’s condition requires constant attention, which makes it difficult for Agnes to leave the home to find work.
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“I don’t have a permanent job,” says Agnes. “Unless someone calls me to wash for them or clean their home, I cannot feed and care for my family.”
When Agnes does secure a job, she needs to also find childcare, which is incredibly difficult, and often impossible, when faced with the stigma and discrimination that is all too common toward individuals with developmental disabilities. While many single mothers can rely on their relatives or neighbors for this type of support, Agnes has found that most are unwilling to help, due to Neema’s condition.
According to international studies by the U.S. National Institutes of Health, the stigma around developmental and mental disabilities can be profound and have harmful impacts on the individual and the family directly affected. It can deprive individuals of basic needs and marginalize them—leading to barriers to physical, mental, and social well-being, including educational attainment, which has its own repercussions. In too many cases, prejudice against persons with disabilities also accelerates poverty, which carries its own stigma.
In too many cases, prejudice against disabilities also accelerates poverty, which carries its own stigma.
These challenges were compounded eight years ago when Agnes was diagnosed with HIV while she was at the hospital giving birth to her daughter Hosiana, who also tested positive for HIV. Agnes worried that she and Hosiana might die from an AIDS-related illness, leaving no one to care for Neema.
“I was hurt when I learned that Hosiana is HIV-positive,” says Agnes. “I kept on asking myself who will help Neema? But I received counseling from sisters, doctors, and nurses from the hospital that I should not worry, and that my child Hosiana will grow well and study and can be healthy.
“I was visited at home [by HIV counselors] and I was coming to the clinic more often so as to continue checking my health. Everyone was giving me hope and emphasizing to me about staying on my medication. God helped me because I received the services and counseling. I followed the instructions. Hosiana and I took our medication.”
Agnes was reassured that she could still have an HIV-free baby by staying on her medication and following other prevention of mother-to-child HIV transmission (PMTCT) protocols, including attending the antenatal clinic regularly if she were to get pregnant again.
“As I was proceeding with the services, I was told not to worry: the possibility of having an HIV-free child is there. When my HIV-positive child reached an age of 7, I became pregnant again and proceeded with medication for preventing the child from getting the disease from the mother. They told me that I have to give birth in the hospital so that they can help me. Then I went to the hospital and stayed for two weeks, and the child was born safe without HIV.”
Still, the layers of stigma remain and can be painful. Agnes does her best to stay positive and provide a good example for her children.
“It is necessary that you do not receive that bad energy and pray to God that He closes your ears so that you do not take all that to the heart,” says Agnes.
“When I am happy, my family is also happy. I have taught my children to never be picky about food and to love everyone, despite the fact that some are not good people to us. Even when my children are not welcomed and others do not share food with them, they should not feel bad—because it’s life, and it shall pass.”
“When I am happy, my family is also happy. I have taught my children to never be picky about food and to love everyone, despite the fact that some are not good people to us.
“When I learned about my HIV status, I thought my life was over,” Agnes continues. “But it wasn’t. God has a plan for me.”
Agnes has bundled her perseverance into a message of hope for other women as a trained community volunteer with the HIV unit at Same District Hospital.
“I speak to other women with HIV like me. We talk and encourage one another and counsel others whom have no one to talk to. I advise them to never give up; to check their health; and, if they are HIV-positive, to follow instructions and start using medication.
Stories about the people who benefit from public health programs can sometimes downplay the continuing prejudice and deprivations that individuals may face. The HIV program at Same District Hospital is one of Agnes’ few lifelines. But Agnes’s situation remains difficult.Her challenges with income, relationships, and a sense of belonging serve as a reminder that stigma is toxic, whether around disability, income, or HIV status.
