Todd is currently on a month-long speaking tour with the "Road to Hope" tour, a nationwide educational campaign that is the result of a collaboration between Hope's Voice and the Student Global AIDS Campaign. "Road to Hope" speakers will provide HIV education and testing at colleges and high schools across the United States, and introduce the Hope's Voice "Does HIV Look Like Me?" awareness campaign nationwide as it travels. For more information on the tour schedule, visit the Hope's Voice Web site at hopesvoice.org.
Who have been your mentors? Who do you look up to, and why?
First would be my parents, who made me who I am and taught me to stand up for myself and to work for what I want to see in the world. Second is Pedro Zamoros -- when I was growing up and watching MTV, his was the only face and voice of HIV that I had. I dedicate a lot of my work to his bravery. He was the first and only one doing what he was doing for young people, and even now there are so few youth doing what he did.
Really, though, everyone who has fought this same fight is my hero. That includes the activists who founded ACT-UP, and lots of the civil rights heroes. I believe HIV is a civil rights issue; I see a lot of parallels between our struggle and the struggles of other civil rights workers in history.
What made you decide to speak out publicly about your HIV status?
After I was diagnosed, I went through a long period of time where I didn't think about it or look in the mirror or anything. I felt a deep sense of shame and regret, because I'd made a decision that turned out to be a mistake. But everyone does that -- everyone makes that kind of mistake. I wasn't going to go back in the closet, so to speak, and keep secrets from everyone -- and I was tired of seeing my friends become HIV positive, tired of sitting around and watching it happen. It's a tragic situation, but I don't believe I need to live a tragic life.
What do you think is unique about your story?
My story is not really a unique story at all. It's a lot like the story of all the other 24-year-olds who are living with HIV, and that's exactly why it needs to be told.
What do you think is unique about the audiences you try to reach when you speak out?
Well, my agency speaks to everyone. When I look out at an audience, it's not one color or gender or sexuality. Lots of programs target specific groups. While I believe that needs to happen to some degree, our programs aren't built just for one population. We want everyone who comes in to feel connected -- that's our mission.
What's the best thing about sharing your story with others?
People realize that HIV/AIDS affects them. I could go to a class and talk and give statistics and all that, but when you talk with students about their world, they leave feeling respected and educated. One-half of new infections are in young people under age 25 -- we're losing the battle, and we need to get real! When we speak with students, they do feel connected. We get e-mails and letters; they feel a personal connection to HIV/AIDS. I met a young woman tonight who still thought you could get HIV from sharing a glass of water. She now has a connection and can protect herself and educate others.
What's the worst thing about sharing your story with others?
I think the worst thing is that you might rather be more selective about who knows you're HIV positive. When you're that much of an advocate that's not really an option. That can be emotionally challenging -- so few people are out, so everyone comes to you for counsel. Some days you just want to feel normal and to be able to have some privacy.
What do your relatives feel about you speaking out?
I don't think it's easy for them. I do know that most of my relatives know, and my immediate family is concerned and worried -- they call me all the time to make sure I'm doing okay and I'm healthy. They also know that I've always stood by what I think is right, and they believe the same things that I do, so they are very supportive of my work. I couldn't do it without their support ... like I said before, my mom and dad raised me to be the way I am. I'm also inspired by my siblings. My sister is 21, a good mother and a good friend. My 12-year-old brother was born with special needs, and his attitude is "You can let it get the best of you, or you can get the best of it!" That's an inspiration too.
What do the people you date feel about you speaking out?
Well, anyone I date knows what I do, so they run if they can't be supportive, right? It's one of the first 10 questions that's asked on a date: "What do you do for work?"
What have you learned since you began speaking openly about your HIV status?
I think the main thing I've learned so far is the power of the human spirit, and the willingness of people to see the best in even the worst situations. I know that sounds corny, but it's true. I took for granted a lot of the best things in my life, like my family and friends and access to decent healthcare. It's humbled me to have all those blessings available to me now that I'm dealing with all this as an HIV-positive person. I feel focused and moved to make a difference. I'll never say I wanted this, because of course no one wants it. But I believe all things happen for a reason, so I can continue to live and not let anything stop me from going forward with my plans and my dreams.
Can you describe your feelings when you were first diagnosed? Did you feel differently a few months down the road?
I get that question all the time, and it's overwhelming to try to put it into words. I was 20, healthy, strong, honestly, I thought I was the last person who could be HIV positive. I felt shock, despair, regret, loss of my will to live ... and there were times when I also felt happy.
The biggest feeling was this sense of being absolutely alone. I was only 20 years old, with HIV, and I felt like no one else my age was going through this and no one would understand and I'd have to go through it all alone. It's important for me to remember those feelings now, so our program can make sure no young person who comes to us has to feel that way. I needed someone I could relate to, and I want to provide that now.
It was a roller coaster -- I think that's the best way to describe it. It was an emotional roller coaster, and it led me to some crazy places. I feel like I lost that whole first year after I was diagnosed, and that's just such a waste. No one should have to walk out after diagnosis feeling alone like that.
How long do think it takes to really process the diagnosis?
Oh, it can take one day, or it can take 10 years. It just depends on the person.
It depends on their beliefs about HIV, and what's going on inside them
-- it has a lot to do with what's already inside. Having a face and a
voice to put with HIV would help.
Any tips for those who are newly diagnosed?
You are not alone! This is not your last day; you are going to wake up tomorrow. There are people out there who are living and following their dreams, and you should do the same. Use everything you have to your advantage -- get educated, talk with people. Pay attention to what you're doing to your body and don't let life slip by.
What do you believe is the biggest risk factor for anyone right now?
Complacency. "That won't happen to me,""I'm too healthy to get HIV,""I only had sex once." Whatever lets people believe that the whole rest of the world can be affected by HIV, but not them. The complacency is the scariest thing I see.
What do you think is the first thing someone who has just found out they have HIV should do? What's the second thing?
First, you need to know that you have a choice: You can ignore HIV or you can take care of yourself. Second, find resources for yourself. You have to initiate contact with whatever can help you, whether through e-mail or a web site or an AIDS organization or talking with a person. You have to learn to be your own advocate -- get educated, and talk with someone you can trust. Cry if you have to. There's nothing wrong with crying or saying "I'm afraid" or getting help.
If HIV were a person, animal or object, what would it be? Why?
I think it's like the ocean. Some days are rough -- it's stormy and the waves are rough and you don't know if you're going to make it. But there are also days that are calm, when you wake up feeling like you can handle it.
What do you think is the biggest problem facing HIV-positive people today?
The general lack of understanding and compassion towards the HIV positive. There's a stigma; we're treated like lepers. I don't look at it any different than cancer, really, and people with cancer are treated with respect and compassion. But we're still fighting for that compassion.
What is the biggest change you'd like to see in HIV care?
There's still real horror stories from the medical community. I read about people having to move across the country in order to get adequate care; I hear about young people whose nurses won't touch them. I heard recently about a 22-year-old man who was admitted to the intensive care unit, who knew this was his last night. He was crying all night for his mother and his boyfriend. The nurses wouldn't even sit with him and hold his hand. That's not a death with dignity, not by a long shot. The medical community needs to have a lot more understanding and compassion for us.
What's the biggest change you'd like to see in HIV education?
In education, well, where to begin? There's a major lack of adequate sexual health education in this country. There's at least one state where it's illegal to say the word "condom" in schools -- what's that about? Condoms are not about religion. Condoms are about protection. Our agency calls for progressive, comprehensive education in the schools. Parents need to look at their children's textbooks, because a tiny minority is making the education decisions for everyone right now. The strongest schools are those that talk to their students and make sure they're getting what they need, the same way an agency will talk with their clients to make sure they're getting what they need. We all have to get involved with the schools!
When you look into your crystal ball, what do you see in the future for people living with HIV?
At this point, I don't know. At this point, we're in a lot of trouble. There's a movement starting and all my work right now is to move that along, but I don't know where it's going to end up. All HIV-positive people need to get loud so everyone can hear us. Maybe 10 years from now, those who are making decisions for HIV-positive people will be in a better place than they are now. There are days when I think it's going to be okay, but there are also days when I don't.
How do you maintain a positive outlook?
You can either laugh or cry, I choose to be positive about it. People look up to me, and I work with amazing people who do amazing work, and we're doing a good thing together. I surround myself with loving, supportive people, and the feedback we get from the students helps too. I'll be having a bad day, and then get a call or email from a person who's been affected by my work, and that helps me keep my perspective.
What was your first CD4 count and viral load count? What is your current CD4 count and viral load count?
Oh, I have no idea what the first ones were. I know I was not in need of medication at that time, though. I'd rather not say anything about my current counts.
What HIV treatment have you been on, if any?
I haven't been on any medications.
How often do you see your doctor? How did you choose your care providers?
I see him every three months or so for my baselines. A friend of mine referred him to me.
What kind of relationship do you have with your care providers?
It's good! When I'm speaking with students who are going into medical fields, they always ask me, "What can I do to make healthcare better for people with HIV?" I tell them, "Give your patients five extra minutes." Although it'll add an hour onto their day if they give five extra minutes to 10 patients, it makes a huge difference. My doctor takes that five minutes to check in with me about my life and my work before we get down to the nitty-gritty about why I'm there, and that's part of why I stay with him.
Do you have any health or wellness regimens that you feel helps you stay healthy?
I try to stay balanced and I try to keep a positive outlook. Living a balanced life is the major thing. I work out, eat well and try to keep a good mindset. I want to let my body and my mind fight the virus for now before I try anything man-made. I'm young and real healthy and got diagnosed early, so that's what I'm doing for now.
DATING/MEETING NEW PEOPLE
How has your dating experience been since you were diagnosed with HIV?
Oh, dating! Well, for me it's been relatively easy because I'm an activist. I don't wear it on my sleeve, but I'm so out about my status because of my work that most of the people who ask me out already know.
What is your strategy for meeting new people?
I don't really have a strategy. I guess if I did, it would be "The right person will come along." I guess for me, dating partners have just happened -- usually at the most inconvenient time, I might add. I haven't really worked at it, because I'm always meeting people.
How soon do you disclose your HIV status to the person/people you're dating?
Most of the people I date I meet through activist work, so most of them already know I'm positive. If they didn't already know, I'd do it right away. That's what any activist does. It's much harder to be left by someone you know well and care about than by someone you barely know.
Any tips for dating that you can share with other people who are positive?
I think the main thing I want to say is "Be proud." Being HIV positive doesn't mean you're not going to be able to have good healthy relationships. Be honest and be proud. Too many young people think that when they find out they have HIV, their dating life is over and they're going to die alone. That's not true! Don't give up on your dreams or your plans for your life. If your dream is to have a partner and a family, you can do that.
What was your first reaction when you were told you'd received this award?
Shock! I love the work I do and I'd do it for nothing. To be honored for doing that work is a huge thing. I hope it'll bring more recognition to what we're doing and cause more people to call us to come into their schools.
Who would you dedicate this award to, if you could?
I dedicate it to all the young people who are fighting the same battles I am.
Could you share a little personal information about yourself?
I don't know what to say, really, so I'm just going to plug Hope's Voice. This is our Mission Statement: "Hope's Voice is a national HIV/AIDS organization committed to promoting the education and prevention of HIV/AIDS to young adults. Hope's Voice uses open dialogue and peer-to-peer education, through both speaker appearances of young adults living with HIV/AIDS and progressive programs to send a crucial message: HIV/AIDS does not discriminate. At Hope's Voice we aim to raise awareness and help young adults create the social change that is needed to end this epidemic." If there's any young people out there who are willing to be open and share their experience with other youth, they should give us a call.
Where did you grow up?
I grew up in Salem, Oregon. In a bubble.
What did you want to be when you were a kid?
Oh, I wanted to be a lot of different things. I think the biggest one was to become an adoption advocate.
What kind of work do your parents do?
My mother is a homemaker. My father is a dentist.
What kinds of work have you done?
Well, before all this I did a lot of accounting, credit analysis and general accounting. I did that for quite a few years.
Who were the most influential people in your life, both professionally and personally?
I'm so close to my family. I can't think of many people besides my family. I couldn't do this work without them.
What do you like to do in your spare time?
Other than work, you mean? I play piano, and I love to dance and travel. Mostly I just like to be with the people who are important to me, my family and my close friends.
Do you have any children?
I don't have any yet, but I want them. I've always wanted to be called "Dad," and that's something I'm looking forward to in the future.
No. I know I'm a gay man and everything, but I'm not real pet-friendly.
Where do you live? Describe your community.
I live in San Francisco, not in the Castro but in a lively, diverse neighborhood. It's a progressive community and I love living in the city with all it's craziness and fun.
If you could live anyplace besides where you live right now, where would you live?
I'd like to live overseas sometime. There's parts of Europe I can see myself living in. I'm a mover by nature, so I'll get there eventually.
What's the biggest adventure you've ever had?
This tour! Definitely this tour, right now! It just gets more and more interesting as the days go on and May 7th won't be the end of it, I know that already. This is just the start of a long adventure.
What are you currently reading? What book or author, if any, has had the biggest impact on you?
Just a while ago I read this book called Gay Dads. I'm 90% sure that was the title, but I can't remember right now. Anyway, it reaffirmed my desire to be a father and to go through those struggles to have a child.
What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?
I pretty much like any kind of music that gets me up and makes me move. There's no one kind I especially like or dislike.
Anything else you'd like the people reading this article to know about you?
My final words? My final words to young people are just that you're not alone. With half of all new infections taking place in people under age 25, we all have a role to play. It's our crisis to face, and everyone has a role to play, even if that's just educating yourself and talking with your partners. Stay strong, and know we're here to stay. Hope's Voice will exist as an agency for young people as long as there's an epidemic going on.
Interview by Laura Jones