POZ Exclusives : The Mother of All Battles - by James Wortman

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May 14, 2008

The Mother of All Battles

by James Wortman

Suzanne Benzer

POZ: Your son Bobby contracted HIV in 1987. How did his diagnosis mold you into an activist?

Suzanne Benzer: My son was in college at Vassar when he, unbeknown to us, contracted HIV there. I had this powerless feeling like I couldn’t do anything for him. When I started doing AIDS work, I often said that mothers are supposed to take care of their children and protect them. When he was growing up, I sent him to the best camps and the best schools, and there was still nothing I could do to [keep him from getting HIV].

Back when he contracted HIV—it will be 21 years in August—death often came really quickly. But Bobby lasted 20 years. He died in November 2007.

Suzanne Benzer with her son Bobby Rosenthal

When I learned that he was positive, I attended a support group for mothers of adult children with AIDS and met many fabulous women. They came from all over; it was an extraordinary experience. I then got involved in Mothers' Voices [now a national advocacy group for mothers of positive children], which was a fledgling organization in the early 1990s. We would go to Washington and bring pictures of our kids. We were able to get in to places that the activists couldn’t get into because we looked like these senators’ or congressmen’s wives. And we became a really powerful tool.

I didn’t know if I could save Bobby. But I wanted to do whatever I could to try and save anybody else who was infected or could become infected. I joined ACT UP—which was in its heyday in those days—and I marched across the Brooklyn Bridge. I’m a child of the ’60s, so I love that stuff. Meanwhile, more and more people were getting infected, the face of AIDS was changing, and we broadened our scope to include everyone.

You said you were already an activist for other causes. How do you think AIDS activism has changed in the past quarter century?

I don’t see any AIDS activism now. When I was at Bobby’s funeral I saw a lot of the old crew and it’s just not the same. The sense of urgency is not here; it’s not an anxious time. I think what’s happened is that there’s this sense of complacency, because people aren’t dying the way they were. Bobby moved to [the predominantly gay San Francisco neighborhood] the Castro at one point, and it was unbelievable to see. It looked like the Holocaust there—all of these poor, thin, ravaged guys. You just don’t see that anymore.  I’m not in the thick of things now, but I’m not sure there still is a “thick of things” anywhere.

Also, [the AIDS relief focus on] Africa is taking a lot of pressure off people to do something here in the United States. I had once thought that in trying to protect my child, I am no different from a mother in Africa trying to protect her child. There’s that primal need to care for one’s child and make it better.

How has your activism changed your life?

Oh, my whole life has been changed. Without my son and without AIDS activism, I never would have known who I was at all. How tough and resilient I am. I grew up a person of privilege. And I never would have known the strengths that I have without this happening to Bobby. I think of it like the Holocaust. I had some family members killed over there, and I used to think that I’d be a chicken and hide. But I realize now that I wouldn’t. I’d fight.

What do you think Bobby would say about the work you’ve done if he were here today?

Well, he did a lot of it with me. We were sort of a pair. I know what he did say, that he was so proud of me, and that gives me some peace now that he’s gone. He and I were extremely close. And I know that he would say, “Way to go, Mom. You did a good job.”

What advice would you give other mothers in a similar situation?

Number one, don’t become a victim. Never go into that mentality. And help your child and stick with your child. And fight for what you believe is right. If you can’t save your child, and if you’ve saved one other life, then you’ve done your job.

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