At the 1992 U.S. Republican National Convention, Mary Fisher shook the nation, taking the stage as the daughter of a powerful Republican leader, speaking openly about living with HIV and calling for an end to HIV stigma and bias. She's still speaking out as an HIV advocate and artist and has thoughts to share about this year's U.S. presidential campaign. TheBody.com interviewed Fisher about her journey and her life today as a long-term survivor.
Re-watching your 1992 Republican National Convention speech reveals its power as a real, core anti-stigma message that is so deeply relevant today. What was your journey to making that speech and what happened afterwards?
I believe that I was definitely in the right place at the right time, having grown up in a Republican home and worked for a Republican president. And my father was finance chairman for Bush. I knew a lot of people in the White House, and in that world, and on the Hill, and everything.
What led up to my being able to give this speech was that the president did want me to do it. But before it, we had done the platform hearings in Salt Lake City, Utah, sometime in May I think it was -- before August. I think that it was maybe a shock to everyone.
My father allowed me to use his name. He allowed me to use what he meant to the Republican Party in order to go to the platform hearings and to talk about how important it was to put HIV/AIDS (but at that time we just said AIDS) into the platform. That was a fight. It didn't really make it in too well. But it least it gave them something to think about.
It was a very much behind-the-scenes: This is important. But I think that many people believed in those days that I was the only Republican with AIDS. That was a scary thing for me. I mean, that was a scary thought, let alone that it could be possible.
My whole being had felt stigma in a way that I never had felt it before in my life. I knew that I really was in a unique place to do this.
I needed [my children] to know that their mom stood up for what she believed was right. I didn't want them to grow up with the stigma. I didn't expect to be alive five years from then. So for me this was my way of saying to my children, "Your mom is not a victim but is a messenger."
I also knew, because I had been lobbied by so many AIDS activists, that they were looking for someone like me to be out there. And I didn't believe that my story would be as big as it was. I didn't have a clue, actually. I knew Magic Johnson had just gone public. I certainly wasn't Magic Johnson -- maybe the opposite, in some respects. A lot shorter, I'm sorry to say.
I thought maybe they were just being nice. Because what could I do? I was an artist living in Boca Raton with two small children -- a white woman from a Republican family. I'd lost so many friends already. I had been divorced from their father when I was even diagnosed.
So we were going through all of that in our own lives. I know everybody remembers the '90s and the '80s differently when it comes to HIV and AIDS. But for us it was really about family. It was important to stand up for what I believed in. And I wanted my children to be proud of their mom.
Now that you look back, is there anything that you would tell your younger self or that has really surprised you through the years -- beyond, obviously, surviving -- that you wouldn't have expected?
I think that perhaps my older self would have said, "You could even speak out louder. You could have been not so afraid, in some instances, and you could have spoken out louder."
I have a wonderful friend, Larry Kramer. I was so afraid to meet him because he just screams all the time at everybody. And he gets attention. I just never worked like that. I was an always-behind-the-scenes person. So I was never a person who would be out there, screaming. And he was pretty right about that. He said, "It's OK. I'll scream loudly. You can do it your way."
I think if I had had even more courage, I could have screamed louder. I don't know. I can tell myself that now. I'm about to be 68. But you tell that to yourself as a 40-year-old person who's dying and has two small children, and has a family that is concerned -- you do things differently to be honest. They supported me, but there was a lot of concern about what kind of backlash would happen.
I just walked right through it. I don't know how I did it, to be honest. You just do it. And you make the decision. Then you move.
How do your children now reflect on those days? And what have they learned through going through this experience as a family?
They are amazing young men. We're very close, as a mother can be to two sons. They, I think, have great hearts. I do believe they would stand up for what they believe in, as well.
I know that they didn't feel ashamed of their mom or their father. And I know that it meant a lot to them, as they grew up. Quite frankly, I consider my whole world a blessing from all of this. I've met some incredible people. And, along the way, they've met a lot of interesting, wonderful people who have taken them under their wings whenever they needed them. We were in a community of people fighting to stay alive. So they met children, and they met people -- they met families. They got a lot of love from people who cared and understood what they were going through, even if I didn't understand it.
Community is the antidote to stigma, from how you're describing it. What's your sense of the HIV community today? Does it feel as if people are as close and working together, as connected? Has the community changed, in your experience of it?
Oh, boy. The community still needs to be a community. And I don't know if it is. I really couldn't tell you if it is its own community anymore. I think I'm still fighting the good fight.
But in America, I don't think I've ever seen people want to forget something as quickly, as badly, as they have wanted to forget about AIDS. Everybody says, "But I never hear about it!" People say, "Is it still out there? But it's cured!" All these things that are not true.
Where is everybody?
I know that we have at least over 50,000 new infections a year. How is that possible at a time when we all know what this is?
I know about countries in Africa and other places because I visit and I work in them. I see how that happens, because the epidemic is so rampant. But in America, how does that happen?
Hearing people say to me, "I just found out I was positive six years ago" or "three years ago," I wonder: How is it that they didn't know? What didn't we do? What haven't we done to tell them that this epidemic is still there, and that they're still at risk, and how to protect themselves?
There's no education in the schools anymore. They won't let you talk about it. Churches -- I don't think are doing this anymore. They shut us down, practically, in so many places -- which is one of the reasons that I started working in Africa. People weren't allowing us to talk in those days. They weren't allowing us to do the education we needed to do.
So they say we do AIDS education. But does anybody really say, "Well, what's the AIDS education that you do?" You can't do it once to children, to young people. You have to do it all the time. It's like learning about wearing a seatbelt; it saves your life. I don't hear that happening.
Now, I could be very wrong. Because in some communities I know that it's happening, because I do meet people that do education, and I thank them, thank them, thank them, with hugs and everything I could possibly do, to say, "Thank you for your work in staying in the field."
I know that there are amazing doctors that have stayed the course. I know that there are wonderful activists. Actually, I just was emailing with a friend a couple of days ago -- with Sean Strub. I was like, oh my God, he's still doing this. I was so happy. I was so -- you know, it made my heart kind of sing, to know that he was still doing it. Because mostly I speak to people that aren't in the community, to let them know that it's still happening. So I don't get the opportunity to -- the love, and the hugs, and all of that community love bubble that you get when you're working with HIV-positive groups or activists, because I'm out there trying to still change people's minds
People aren't dying in front of your face anymore. But people are still dying. It's still an epidemic. Sometimes I question what haven't we done to make people understand. Because now, OK; we have medications. You know, this medication is not so easy to take.
I don't find it very easy to take. I can't take the heaviest-dutiest of the medications.
I have to be monitored more closely. My health goes up and down. I just had cancer recently. Is that because my immune system is compromised? Probably. There's no cancer in my family. So we don't know. I don't have the gene and everything else.
But there's not going to be any research on that, really. You know? So you just move on. And you keep going. And you keep doing.
What I don't do very well, though, is I don't rest. I don't know how to do that well, unless I go to sleep. I don't know how to not do what I do. I'm an artist and I speak out, and I want to help. I don't know how not to do that.
As you've gotten older, what are you finding out about yourself, as someone aging with HIV, as so many people are? How are you staying healthy? What other challenges are you encountering? How are you handling this next phase of life?
How am I aging with it? I don't feel that old. And I feel well from HIV.
I don't feel sick. I take pills twice a day. I'm grateful for the pills. The last time I went on a [treatment] holiday, took a holiday from the pills, I went down so fast and realized I can't do this.
So I know that I need this medication. The side effects you live with. You live with whatever it is. I mean, how do we really know what the side effects are, besides the lipodystrophy and the stuff you can see? I know that you can be prone to other things that people without HIV wouldn't be as prone to: heart disease and all kinds of things.
I don't know what that means, except that if I see the doctor every three months or every six months, they check everything. And if I'm good, I'm good. And I go.
Right. You go live life.
And yet, if something happens, that's the doctor I call first. I don't know anybody with HIV that doesn't feel like that, even when you get a cold. And in the beginning when you got a cold, that was really hard -- I mean, before you were on medication. You get a sinus infection; you think it's all over.
Do you spend much time with other long-term survivors? Do you feel sort of a kinship?
Oh, I do. Definitely. Oh, I definitely do.
There is a kinship. It's as if you've been in a war together.
I also think that there's a kinship with the families of people that I meet. I'm very open about my AIDS, and I always talk about how I combine art and advocacy and how important that is. So I reach a lot of artistic communities and designers who have been through this war that we were just talking about, as well, and have lost a lot of friends -- even if they're not the long-term survivors.
I feel a kinship with all those families. I feel totally grateful to be able to share with them. Because I share my story, they feel more comfortable talking to me. I think that that's the blessing that I find in this whole epidemic. I get to hear those stories. I get to share with people. I get hugs, and I get love. And hopefully I give some back.
What are the untold stories of today that you want people to hear and do something about?
The stigma's not gone; people are still afraid to talk about it. They're still afraid to tell people. The stigma hasn't changed.
I think I could give that same speech today. That is scary, isn't it, a little bit? So for me that war hasn't been won. That part of the war has not been won.
Do we have a cure? That war hasn't been won, either. Are we trying to find one? Well, I just know that there are people that are looking, now at last. But I don't know that it will happen.
Fortunately, the war we've won is that we've been able to keep people alive longer, with a quality of life that allows us to be productive citizens. That's amazing. Raise our children. Keep our children. I do believe that we've won some wars against discrimination, although somebody might say, "Well, look at North Carolina; look at Georgia." Even Michigan. I don't know.
But I do remember times in the '90s, early '90s, when I would get calls from women who'd had their children taken away from them when their employers found out that they were HIV positive. I haven't heard that story in a while.
I do believe some of the stories have gotten better. And I believe the gay rights fight -- the all-over fight, not just the marriage fight -- certainly helps the AIDS community. But I don't think we can walk away from it.
And there are people that can't get medication. And there are people that don't have access to drugs or even to doctors who will treat them. Because they can't get there -- and they're afraid, especially women.
So are we winning the war? Well, I don't know. I mean, PEPFAR [the President's Emergency Plan for AIDS Relief] did a great thing. PEPFAR was amazing. I will forever be indebted to the Bush administration for that. I've watched people turn around their lives. I have been a witness. I think it has been remarkable.
But, so many times, it reminded me that I wish the United States was a PEPFAR country. That has always been my dream, that everybody here could also get medication -- for nothing, you know? Or a little-little. You know? For very little.
Anyway, that's a pipe dream, for sure. But PEPFAR's been amazing.
We've learned a lot. PEPFAR's learned a lot. But education is still important everywhere. We have to educate young boys, as well as young women. Are we doing a good job of that? Not so much. That's the war. That's really the war. It's the next generations.
We keep the babies alive now. They can be born negative. But then they get to be teenagers, and what do we do? It's very frustrating. It's anger provoking. It makes you want to go and say: "OK, never mind. I'm going to just take a boat and go somewhere."
It feels huge to me. So I just do my next speech. I just do my next book, or my next conversation, or my next interview. And hopefully I can be a small cog in the wheel to make it better.
I don't know. I don't think they'd want to hear from me at the [Republican National] Convention, but I may want to -- who knows?
Well, I think they should. That would be great.
They could just play it again! Play it again, Sam.
Interview lightly edited for clarity.
JD Davids is the managing editor for TheBody.com and TheBodyPRO.com.