A Pioneer Activist on World AIDS Day

Debra Fraser-Howze talks about the rowdy, heart-wrenching early days in the fight against the epidemic.

Debra Fraser-Howze

[After the original session was closed due to the melee, another was scheduled and] the Fruit of Islam walked in with suits and bow ties and said [to the room of doctors, activists and protesters], “We are here to protect the community’s right to hear the science.” It was the first time that we were able to hear the facts on this 076 trial, with the protection of the F.O.I., and lo and behold, it is the biggest success in the fight against HIV and AIDS. We have reduced the virus’ transmission from mother to child in utero, and now we virtually have no babies born in the United States with HIV and AIDS (pdf) because their mothers are HIV positive.

This directly deflates the idea that “this segment of the community doesn’t believe in medication.” When the rubber hit the road … the community showed up. Now it’s time to come together again to help the Obamas move us in the right direction. If we ask for a seat at the table, we’ll be given that, and I am certainly willing to help.

TR: When Magic Johnson introduced the OraQuick at-home test, he said the biggest problem African Americans face with HIV/AIDS is shedding stigma around knowing their status. But how has the stigma changed since the epidemic began?

DFH: Twenty-five years ago, I would visit black gay men in the hospital, and some of their mothers wouldn’t even come to see them. Since then, the education around this disease has gotten so much better. From 1981 to 1983, I held babies at Harlem Hospital that would be there today and gone tomorrow. They were called the border babies, left by mothers who would deliver, discover that they had full-blown AIDS and would leave the baby at the hospital because they felt that that was the best place for them.

We were so unaware and uneducated about this disease. These babies were piling up, and the hospital staff was begging people to come hold them because newborns also die from lack of being held. It was an excruciating part of the epidemic. Both black and white AIDS victims would linger in the hospices, and we’d have to suit up with masks and, in some cases, entire body suits to visit them. All of these things happened at the beginning of the epidemic so stigma was the least of our issues …

Will we rid ourselves of the HIV/AIDS stigma because it’s a disease that is associated with sex? Americans don’t do well discussing sex openly, especially African Americans, because we’re relatively conservative around sexuality. But we have to move past all of that. For Christmas, I will be giving my single daughter one of our OraQuick AIDS tests, wrapped with a bow and a note that says, “I love you this much and I want you to love yourself.” When we all get to that point, we’ll be OK.

Hillary Crosley is the New York bureau chief at The Root.