Speaking Out Against Stigma

April 11 is the second annual International Day for Maternal Health and Rights. Any discussion about women’s access to health care should include a reflection on the obstacles and threats posed by stigma.

Despite the strides that the world has taken since Elizabeth Glaser was infected with HIV in 1981, stigma toward HIV-positive women continues. For example, according to the 2013 UNAIDS report, HIV-positive women in India frequently face rejection from their families and ostracization from their communities. Their children may be taken from them. As a result, many HIV-positive women fall into depression and some commit suicide.

One young woman once at risk of that fate is Banita Jena, a 26-year-old living near Bhubaneswar, India, a commercial hub on the Bay of Bengal. In 2009, Banita got married and two years later was happily pregnant. She looked forward to welcoming the new child into the home that she and her husband shared with his parents. Unfortunately, the delivery did not go smoothly. Banita started bleeding badly during labor and was given three separate transfusions. Despite the frightening situation, both mother and infant daughter survived the delivery.

However, after Banita and her new daughter were discharged, the infant became chronically ill. A counselor at the care center referred Banita to another hospital where a doctor suggested that the infant might be infected with HIV and advised Banita that she and her husband should be tested for the virus. The test results showed that Banita was HIV-positive while her husband was not.

It is likely that Banita was infected from the blood transfusions. Although the medical blood supply is safe in much of the world, HIV transmission through blood transfusions continue to occur in India because of inconsistent screening practices.

Banita’s husband assumed that his wife had been unfaithful; he abandoned her and their baby in the hospital.
 
“He had the notion that [Banita] might have done something wrong, [that] she is not good, and so she has got HIV,” said Chandan Kumar, a counselor with Solidarity and Action Against the HIV Infection in India (SAATHII), a partner with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). 

When Banita returned home with her infant daughter, her in-laws refused to let them into the house. Banita’s husband refused to see her.

Fortunately, Banita found support with the Kalinga Network for People Living with HIV/AIDS (KNP+), a partner with SAATHII that helps negotiate day-to-day struggles. In this case, KNP+ tried to reason with Banita’s in-laws and open a dialogue. But they were unsuccessful.

“[The in-laws] were very clear in their intentions not to take her back,” says Chandan. “We made a second visit, asking them to take her back but in the meantime her child had died. And this visit also was a failure.”

The legal team working at SAATHII helped Banita file a claim for her property. In the end, her dowry was returned. She also received some money for her daily maintenance. It wasn’t as much as she had expected but it was something to help her live during this transition.

Now Banita works at an HIV treatment center as a counselor with KNP+.

“I can show that HIV-positive people can lead a good life,” she says. “I went to live a healthier life with my message to the positive people and to society: never lose hope. That is my message. Nobody knows about HIV; they only know about AIDS,” says Banita. “They don’t know about the treatment processes … how you can live long … what is home-based care … what is positive living?”

“Since we are [HIV-] positive—and we are dealing with people who have tested positive—who else is a better role model for the client?” asks Pravasini Pradhan, the president and founder of  KNP+. “We tell them, ‘Look … I am HIV-positive. I can live a healthy life with dignity.’”

Banita has helped conduct village meetings of up to 100 participants to stop “whispering campaign” by informing both genders about the realities of HIV and AIDS.

“I was nervous,” Banita admits, but she quickly adds that through her KNP+ support groups she has learned to express her feelings and is now confident speaking in public. She says that education is the key to removing the stigma of HIV.

“Banita has become empowered” since she started working with KNP+, says Chandan. “Male counselors can’t go where she goes.”