We recently had the pleasure of interviewing Doreen about her experience as a cyclist and AIDS activist. Without getting too personal, we have to admit it was a very emotionally moving and life-changing experience. She is an incredibly inspirational and insightful person. We need a million more Doreens in this world. To categorize her as unique and special doesn’t do her justice. All I know is that if I had a lesbian sister I would certainly want to introduce her to Doreen and hope for the best!

What follows is the interview we conducted with Doreen. It changed my life. I hope it changes yours as well…

Thinking about when you first became involved in the HIV/AIDS movement and community, was there a specific event or a particular person that sparked your interest and caused you to get involved?

“It goes way back to when we first heard of HIV/AIDS. I worked at a clinical laboratory that processed blood samples. We had to make safety kits for drivers that contained bleach, gloves, and other items for precautionary measures. The workers didn’t know what to do if they were exposed to blood, sweat or other supposed transmission methods such as needle sticks. We just didn’t know at the time how HIV was transmitted. One day while working I heard an excruciating scream from the processing room. It was a Sunday so there was no one else around. There was a woman, a co-worker, who processed blood samples in the other room. I ran into the room to see what had happened. She was holding her hand. She was wearing double gloves. She said, “There was a needle in the bottle. Someone left a needle in there! I just stabbed myself with the needle and that’s an HIV positive tube!” She just looked at me with tears streaming from her eyes and she said, “Who is going to take care of my baby?” I lost it. I had to leave the room for a few seconds and compose myself. I called the General Manager to see what we could do. We didn’t know what to do because there was no protocol for it. HIV wasn’t talked about, even in a laboratory that processed HIV positive blood samples. It was oddly taboo to talk about it.

I was in the process of leaving that job. She didn’t come to work for a month or so afterward and by the time she returned I had already left so I didn’t ever find out what had happened to her. But I can picture her at her desk. I can hear that awful scream. I can see the tears in her eyes. This was a person who did nothing wrong. Simply by accident she punctured her glove with a needle. It could have happened to anyone. And I heard about all the guys contracting AIDS and I realized, they didn’t do anything either. They did what every human being does, and that’s have sex. No one did anything wrong. It’s so odd that people are so afraid of kissing, hugging, or touching. So I was appalled. There was an AIDS walk I heard about and it was the very first year so I joined that, and my brother signed me up for the bike ride. My brother said something to me before the orientation. He said, “You know Doreen… let’s go make history.” I laughed and said, “How are we going to make history? We’re not Martin Luther King or Cesar Chavez or anyone like that.” But I thought about it and said, “Who knows? Why not?” And I will forever hear that woman’s cry in my head. And I thought, if that’s what it’s like: ‘Who’s going to take care of my baby? then how can I not do something? And what about all the other mothers out there crying ‘Who’s going to take care of my baby?’ So I said, let me go do this because my family is huge. So big. And I know it’s going to touch us sooner or later. And it did. My two cousins who were HIV positive and passed away. And then my brother was HIV positive. So I thought, “How could I NOT do this?” And I continue to do this to fight to make everyone aware. Anyone who will listen, because education is so important. A lot of people just didn’t understand how HIV is transmitted. We’re not a very understanding world. We judge, and who are we to judge? So we need to just go out and get the job done. And that’s to help people and be humanitarians.

What attracted your brother to the AIDS ride?

I can’t really speak for him but I know as his sister that he’s just an all-around good guy. He thinks ahead and is always focused on the future. He knew HIV/AIDS wasn’t going to go away. He just brought me in and said, let’s go make history. He said, “We’ve got to start doing something now.” He just brought me in. Wow! How wild is that!

As you look back on your participation in the Every Ride, Every Mile ride, how has this event had an impact on your life as both an activist and bike rider?

Well, I’m one of two people who have ridden every mile of every ride. But honestly, I never thought of the mileage. I’ve always been an athlete. I was injured in the late 80’s and couldn’t be as athletic as I wanted to be and it was hurting my mental state. But I realized this is something athletic I can grasp onto and at the same time actually help somebody.– that I could actually help somebody live by living myself. And so I said, “You know… I’m going to just go out and do this.” But it was a struggle because it was very painful for me. But at the same time I wasn’t HIV positive. I didn’t have the thought, “am I going to die today?” in my head. A person who is HIV positive thinks every day, “How am I going to keep living today?” And instead I think about, “What am I going to do today?” Those two thoughts are totally different. And riding and being athletic is fun for me and I’m going to be able to save a life! Funny story… My sister and nephew think about the mileage and they calculated two or three years ago that between training and rides I did about 90,000 miles! I thought that was incredible because I don’t think about it. I keep journals of my riding so they were able to calculate it. I look at all those miles and I think about the lives I have saved with each pedal stroke and it makes me feel so proud to be a human being.

As bicyclists, we all have a favorite mile of road we’ve ridden. What was yours?

“Going into Santa Maria when we get that tailwind going over those rolling hills. Oh my God! When I top out doing 33 – 35 mph during that part of the ride it’s the most incredible feeling in your body! And I have no one to thank for that feeling but AIDS/LifeCycle. I mean, who wouldn’t do this ride? What a journey! You never want that road to end! Up to that point, going through Greenfield, there’s an extreme headwind where you’re fighting to keep upright and then to turn right and experience the reward of this beautiful ride for all your hard work. It’s so profound. It’s like the struggle you go through to fundraise and train and then you get this beautiful tailwind at the end. We all have that wonderful feeling inside.

Thinking about the opening and closing ceremonies in past years, is there one special memory you have from those events? And, when and how did you first learn of Positive Pedalers and what motivated you to participate in the organization?

Of course, I always have to go back to the very first ride I did because of all the extra work I had to do because of the car accident I had. I remember the moment I started on the first ride. My whole body was shaking. I was so proud to be there. We didn’t have an audience that first time. We didn’t need one. We were our own audience. We were our own power. We were our own journey. I learned so much on that first ride. It was so profound for me. I trained with people from all over the USA and the world. I was not the fastest because I had a mountain bike and I was dealing with an injury. I didn’t have the nice bike and I didn’t have the nice clothes. I just went out and did what I could do with what I had. I always arrived at the end of each day when it was dark. I know what it’s like to be last. I know now as a training ride leader to be there for that last person and to not let them ride or walk in alone because I was alone, but I wasn’t alone. I learned for the first time in my life that I was never alone. A lot of the guys I was with were positive and we didn’t have the Positive Pedalers back then. When I went to those opening ceremonies all the guys I was training with were all around me and I remember thinking, “Oh my god, look at me with all these guys and we’re going to go do this.” And look at them! Look at them! You look at them and you think, “Oh my God, they have to take all that medication…” and I hate pills. I don’t know how they do it! And I don’t need pills and I can ride. And how are they going to do this? I was recovering from the accident but I was getting better. But they were stuck with this disease that would kill them and I wasn’t sure what they were working towards. Even they don’t know what they’re working towards. They just wanted to stay alive for that next day. Andy, Allen, Jonathan, and Ginger… And Tim and Tim, and all these people I trained with were remarkable These are the guys who trained me and help me be positive about my attitude. And I wasn’t in their shoes… their cleats. That opening ceremony brought it all to me – the true meaning of that first ride… What it was all about.

There was no one there to applaud us as we rode out except the medical team! But they were wonderful! And we were our own energy. My inspiration in that moment was the thought that I was going to help the guy next to me on the ride to live; to be able to live. What I was working for didn’t really hit me until I heard Andy tell the radio station that he was HIV positive. I think it was the love and support that his brother showed to Andy; to be there for him. That was the profound moment for me. It’s why I also ride. There’s a lot of Andys out there who don’t have brothers there to support them. I thought, “My gosh… who is going to take care of all those guys? Who is going to love them and care for them and take them through their journey, their life, their next day?” When I got into LA with my brother we were both tearing up a little bit because all of a sudden we saw 3,000 people there cheering us in. We were numb. We were stunned. We were tired. We didn’t know what was happening. It was all happening in slow motion. I was scared.

A woman grabbed my shirt and I was scared because I thought she was going to hit me or something. Along the ride there were people throwing shit at us and calling us bad names. They would throw garlic and tomatoes and stuff at us, and yell at us, “You faggot… you this, you that…” So I thought this woman was going to slug me! And I thought, “Oh no! I don’t want to hit a woman back!” She was crying and I felt she was angry at me. But she mouthed as she grabbed me, “Thank you for riding for my son!” Her husband was next to her and he said, “Thank you… thank you for riding for our son! From the bottom of our hearts, we love you so much! Nobody else cared but you guys did!” I thought, “Wow…”, but all I could say was, “You’re welcome.” I will remember that moment in my life forever and more. And you know what? They were a Latino family. She said, “Thank you for riding for my Mijo.”

Every ‘Thank you’ after that just made me feel more and more proud about what we had done. When Jonathan Pon put Pos Pedalers together I was blown away because they earned it. They didn’t need to do it. They just needed to get healthy and stay healthy. We didn’t want them to ride but at the same time they needed to do it to empower themselves. And Jonathan empowered the Positive Pedalers. He gave them something to live for. We were losing so many wonderful people so fast. I thought, “Who’s going to be the wonderful artists? Who’s going to teach us about tolerance?” Because it’s the people we were losing that gave us the understanding of tolerance.

The last words I heard from Jonathan were about ordering him a T-shirt for the ride. He called and left a voice mail on my machine asking me to remember to order him the correct size t-shirt. I kept that message until I lost my phone. And that was just two and a half years ago. I kept the message for so long because I thought, “I can’t lose him. I can’t lose that voice; that message. I can’t lose what he had inside of him.” He had that courage and strength we all aspire to. He had inside of him something so Zen-like and positive that I couldn’t lose that. I needed to hold onto that. I work every day to be like Jonathan. I wish I could be like Jonathan. He was a great guy. When we did the Memorial ride for Jonathan we put it together as fast as we possibly could. It was about doing a ride for someone who was HIV positive, who was a positive Pedaler, and who rode to help himself and others live. How could we not do something in his legacy?

It’s important to note that people don’t understand about the new medications. They think that because there are all these new medications that everyone is fine and the crisis is over. No! No! It’s not gone away and it’s not going to go away for a long time. There’s no vaccine. Even with the medications they have there are so many side-effects and it goes way beyond that. If you were to take even an Advil or Tylenol every day there are terrible side-effects. A lot of these medications that people are taking are newly approved by the FDA and there are no long-term studies to describe the effects. The only thing that’s been around longer than any of us is aspirin and they’re still learning new things about aspirin so you can’t imagine what HIV positive people’s bodies go through with all the medication. It’s beyond me how HIV positive people are still walking on two legs. It’s beyond me.

As you know, Jonathon Pon founded Positive Pedalers in 1995. The first Positive Pedalers Board was formed that same year. Jonathon passed away in December 2001. Are there any memories you have of Jonathan and the work he did that you’d like to share?

The work that he did was to support everyone. He was all about educating all of us, constantly, about what it was like to be HIV positive. I couldn’t imagine how this beautiful, healthy man could not finish a leg of the ride. Jonathan was so persistent with making sure that people outside the ride knew that HIV wasn’t going to go away and that we needed to continue supporting our HIV positive and HIV-effected human beings. And that’s every human being on the planet.

The Positive Pedalers mission statement is, “We are a group of people living with HIV/AIDS eliminating stigma through our positive public example.” How do you see your role within Positive Pedalers supporting the organization’s mission statement?

As a training ride leader, and as a rider, I think safety is most important because you never know what’s going to happen. It’s top priority to be safe while riding your bike. With the safety speech I’m giving I’m also letting them know that we’re doing this ride for someone to stay healthy. I let them know, “Please stay healthy yourself in order to give that HIV positive person life.” We do this ride for the Positive Pedalers. We do this ride for the person who isn’t able to pedal. I ride with a keychain in the back of my saddlebag that says, “Buster.” People ride by and say “Hi Buster!” And I’m like, “My name isn’t Buster… it’s Doreen!” It was given to me by Claudia years back when we first started the rides. I remember it was the third year into California AIDS Rides and the travel agent called me up and said, “Doreen, you still don’t have anyone in your hotel room!,”and I said, “I know! Can you get someone for me? I don’t want to have to pay for the hotel expense alone!” So he called me a few days later and said, “I found somebody! They just registered for the ride!” So I thought, “Did they train?? Oh my God!” Well, it was a woman named Claudia and we met at the hotel before the ride. She brought along a friend and we talked a little bit. I found out that her brother was HIV positive and her family had not told her that he had passed away because they were ashamed he was positive. He died alone. The family lived in Ohio and Claudia lived out in Orange County and she didn’t know he was so sick. He didn’t want his sister to be told he was that sick. And that’s where the stigma comes in. They think, “I don’t want to tell anyone and I don’t want anyone to know. I don’t want to be ashamed of myself and I don’t want my family to be ashamed of me…” But her family was ashamed. She told me that the family cremated him and didn’t tell her. She was beside herself after that experience so she went online and found the ride and practically begged to be on the ride. She explained that she needed to do something to help her feel better about herself. She felt like she had let her brother down. She said I’ll do anything, even pick up trash. This is a woman who was an executive at her company and she didn’t care what she would do – she just needed to do something. So… she literally picked up trash. I tented with her because I didn’t have a tent mate. She was a roadie. Tent mates that are roadies are great! She took care of everything for me!

I went to get ready for the ride and all of a sudden I heard my voice being called out. It was Claudia and she was running toward me and she was crying. I automatically thought, “Who hit her? Ha, ha!” I asked her if she was all right and she said, “I forgot to give you this!” I said, “What’s that?” She said, “I was going to ride but I haven’t trained. But I made this key chain for my brother and it has his name on it, “Buster.” Will you ride with him?” We both cried. I put it on my saddle and I rode with Buster all week long. I said, there are going to be some bumps, there’s going to be some complaining, but he and I are going to be friends by the end of this ride!

Do you still have the key chain on your saddle?

“There’s a story here… I would hear Buster, the key chain, banging as I went up the hills and I would talk to him… At the end of the ride I gave the key chain back to Claudia. I said, “Here’s Buster’s key chain.” She said, “Thank you for riding with Buster. I needed someone to ride with him because he needed to go on this journey as much as I did.” The following year she trained for the ride. We had exchanged addresses the previous year. A couple of weeks before the ride the key chain came in the mail. She said, “You rode with Buster last year. I made my own Buster. Could you ride with Buster again?” So I rode with Buster again but at the end of the ride I gave her back the key chain. She gladly took it.

The next year she couldn’t ride. But she sent me the key chain again. So, I did the ride with Buster again! I saw her at closing ceremonies and I gave Buster back to her. The following year she was doing the ride. In the mail, again, before the ride, I got a letter… and I thought, “Okay… this is Buster…” but it wasn’t. I saw that inside the letter there was a small, soft, baby-blue blanket. I opened it up and inside the blanket was a little, tiny bracelet. It was one of those little block baby bracelets and it said Buster on it. There was a letter inside and it was from Buster’s mother. The letter said, “I want to thank you for not being ignorant. Thank you for being such a supporter of my son. I was ignorant, I was selfish, and I did not support my son. He was sick. He needed his mother and I was not there for him. You were. I want to thank you from the bottom of my heart for riding for my son all these years. Thank you, thank you. Please ride with Buster.”

When I saw Claudia at the ride, I ran up to her and I said, “This is baby-blue Buster!” But she didn’t know her mother had sent me the bracelet in the mail. And she said, “Oh My God…” We cried. So, she rode with key chain Buster and I rode with baby-blue Buster. At the Closing Ceremonies there were 10,000 people there. I don’t know how we found each other, but we did. I wanted to give her bracelet-Buster but Claudia said, “No, Doreen… you gotta come with me…” So, I walked with her and there they were. It was Claudia, and Buster’s mother, sister and brother, her daughters, and her brother-in-law. We all had tears in our eyes. We hugged forever. We all knew why we were there. We were crying for Buster because we all knew that Buster had finally brought that family together. He brought enlightenment. He brought together this family’s diverse journey to make them understand that HIV/AIDS is not going to go away.

It takes courageous people to understand that it’s not going to go away by cremating someone. That life is in the heart and life is in the soul. And he brought them all together to show them that truth. It was an incredible moment and an incredible feeling.

It’s about the Busters, the Jonathan Pons, the Paul Hulses… those people and all of us get to share this amazing journey that’s so incredibly empowering. Every single person experiences it. Whether it be the riders, the roadies, the families, or the people along the ride that come out. Other people want to feel that. This ride gives everyone an opportunity to grasp onto that journey. Not just people in the gay community but people everywhere. It allows them to feel free to understand why we ride. We all ride, positive or not, so that people can live. These people I rode with allowed me to understand what tolerance is. They gave me that opportunity and I took it. And that’s why I ride.

AIDS-related stigma and discrimination refers to prejudice, negative attitudes, abuse and maltreatment directed at people living with HIV and AIDS. They can result in being shunned by family, peers and the wider community; poor treatment in healthcare and education settings; an erosion of rights; psychological damage; and can negatively affect the success of testing and treatment. Looking at HIV and AIDS-related stigma from your point-of-view, how have you personally been affectedby it and what can the HIV/AIDS community at large do better to proactively continue the fight against discrimination in coming years?

Education is important but it’s more about communication. There are so many channels of communication out there now; the internet and such. We need to utilize as many of those channels as possible. Whether it be Youtube, Twitter, Facebook, or whatever. There are so many people out there who are HIV positive who are not gay. It’s just incredible that still, to this day; we still have the stigma that AIDS is a gay disease. It’s like we’re in a box and people need to think outside the box. It’s not a gay disease. It’s the world. We’re in it. Live it. Stop denying it. There’s no reason not to. Whether it’s because of your religious background or whatever.

All religions are about love, caring, and kindness. Well, what happened to all those values when we’re looking at the gay community or AIDS? What happened to those words within your religion? Did they just go out the door? They shouldn’t! They should be out there… in the forefront. I think people just take those words for granted; love, caring, kindness. You can say them, but do you feel them? When people look at someone who is HIV positive it’s like they’re confronting the black plague – like they can’t go near them or touch them. Where’s the kindness? Where’s the caring? Where’s the love? Man. We’re human. We’re all going to die. We all eat… We’re all human.

There was a scientist who attended the conference in Africa. He had a tremendous impact in the fight,He said, “We’re all the same. We have arms. We have legs. We have a mouth. We have eyes. We’re all the same.” And we are. We’re all the same. And there should be no reason that we should think that we’re not, because we are. And what is normal? We don’t know. Don’t ever try to think you know what normal is. Normal is a figment of everyone’s imagination. Educating our own is important. There are cultural boundaries we all must deal with in order to get the information across to people; the right information. Don’t lie to yourself. Be true to yourself and to one another and the world. Love is free. If you’re paying for it you’re living a lie.

AIDS stigma and discrimination exist worldwide, although they manifest themselves differently across countries, communities, religious groups and individuals. They occur alongside other forms of stigma and discrimination, such as racism, homophobia or misogyny and can be directed towards those involved in what are considered socially unacceptable activities such as prostitution or drug use. Thinking specifically of the Latino/Latina Community, what changes need to take place to foster a better understanding of HIV/AIDS in the Latino/Latina community?

We all know that a lot of Latinos are Catholic and religion has a lot to do with the thought that being gay and homosexuality is wrong. I don’t know if we can change it. But what we CAN do is give them the information. It’s because we know that children grow into thinking like their parents. We can educate the children that it’s okay to be gay and a homosexual. But it’s not okay to not help someone who is sick; whether it’s cancer, or AIDS, or lupus. It seems normal and okay to go out and support and help all other diseases, but what’s wrong with AIDS? There’s the stigma that it’s a gay man’s disease but it’s not. It’s almost like we have to forget about the older generation – the older generation and move on. Because if we don’t then we’re stuck in that little box. We have to move on to the next generation. AIDS has been here for so long it has already effected the new generation. It has already effected the new Latino generation. It hit us hard this past couple of years. And it’s because their parents didn’t want to bring that information into the home. Therefore they lost out on the information. They don’t want to bring into the community either.

Are we afraid to go into east LA? Are we afraid to go into Compton? I’m afraid too but at the same time I’m not afraid! I think I’m not afraid because I’m older and if I were younger I might be afraid, but you know what?… Every time I think I’m afraid I think of Cesar Chavez. What makes me proud as a Latina woman and a Chicana woman is the fact that I saw someone of my same color do something positive for my nationality.

I grew up in the 70’s. Chavez was one of my heroes and he still is to this day. And because of that I’m not afraid to go into the community and stand up. Sure, I’m afraid of being shot at or punched… and sure, I may be injured and bruised, but they can’t bruise or injure my heart. And that’s because it’s not going to hurt me mentally or hurt my heart. It would hurt me if I didn’t go out and ride. That would hurt me. I work at UCLA. When someone comes up to me and says, “Hey, are you that girl that rides?” I say, “Yeah!!” Most people want to know how they can get involved and I’ll sit with them and talk about it. It’s amazing because even if there’s someone around who is not participating in the conversation they’ll usually join in. If you take the time and have the patience to talk to people they will listen and they will come. It’s about not pushing. The more you push the more negative people become. It’s like merging into traffic. You have to be patient and wait. People will come to you. You can’t tell people, “You gotta listen to us or else!”

HIV and AIDS is happening in the jails and there are a lot of Latinos in the jails. They’re proud Chicanos and Latinos and they have the stigma that says, “I have to be brave and strong and that AIDS is a gay thing, for faggots, for weak men, and I’m not that way.” But no one said that you WERE that way. AIDS is just a disease like cancer. Please… get it together and understand that you are not a homosexual if you think helping someone that has AIDS means you’re going to become a homosexual. Everyone has pride but I think it’s really strong in the Latino community. In the Latino community we have a specific pride. There’s a stigma in the Latino community that the women are Santitas, and they’re weak and the men are powerful. That the women are only supporters but it’s not like that. We live in America; in a world that is not like that. We don’t live in the little towns in Mexico where the man is the worker and laborer. We live in a community where everyone supports each other. And we need to maybe get them to try and understand that. It’s a whole world… not a small Mexican town… and we need to support each other. But maybe we can’t communicate that to the current generation. Maybe we need to focus on the next generation. It’s so hard to break down walls. You can’t go to east LA and say, “Gay Power!” You’ll be shot. But you don’t have to communicate that message. The language we use is going to have to be so much different. Cesar Chavez used a language that was so welcoming. We need to find that same kind of language. We have to give people the understanding that we’re not there to harm them or influence them and “make” them homosexual.

Anything else you’d like to add?

Be the person who makes a difference.