BARBARA ARANDA-NARANJO: Let me thank the people that put on the conference—I know it's a lot of work—and specifically to Sabrina Matoff and Frances Ashe-Goins for inviting me to work. I'd like to make a clarification on my bio. Two weeks ago, the good lord has called me to a different job. And so I have left the federal government and am now a professor at Georgetown University and continuing my public health work with AIDS. In the time I have with you, what I'd like to share with you and a responsibility I have carried for some time in working in HIV and AIDS for almost 20 years, it has defined my nursing career as a public health nurse. And the responsibility that I carry are to be the voice and to share the stories of the many patients and clients and family members, specifically women, that have walked with me. I've walked with their journey, and they're walking in my journey. So I'm here to do the best I can to share with you what they've shared with me. And what I have learned of all of the books I've read and the degrees I have, I can say there is no better teacher than the patients and clients that I have been honored to serve.

All of us have a context in which we live our lives, and that context shapes what we think, what we feel, what decisions we make. Our cultural beliefs shape how we look at that context, our cultural beliefs, our social support, the families, the friends, and the colleagues in our community. But what happens when our experience with our context is negative, and the resources that can help us appear alien and removed from our cultural beliefs and way of life? Let's look at the context of healthcare and clinics, where most of our people get their care, if at all. Do we want to visit a clinic where I feel worse after I leave? Do we want to see a provider who, through their body language, blames me for my circumstances? Do I want to go to a clinic where people look at how I am dressed or how my children are dressed? Let me tell you about the women I have served over 18 years and the lessons they have taught me about living with HIV and feeling disconnected in our healthcare system.

I title this "Moments in a Woman's Life." I've been working in a coposcopy clinic, and that coposcopy is for women who would get abnormal pap smears who are HIV positive. And one of the reasons I work in that clinic is I had a colleague—and I'll just say it's an inner city clinic, because it could be an inner city clinic in many urban areas—but I had a nurse colleague who was the nurse director. And I said, "I'm here in DC now, and I want to get connected with my community." I said, "What can I help you?" And he says, "Well, could you do a coposcopy clinic?" I'm a nurse. I'm not a nurse practitioner, and it requires either a nurse practitioner with training or a physician, she said, because most of the women who are HIV positive who get abnormal paps have nowhere to go in the DC. And if they do get to see them, if they're uninsured, they have to wait a year. I said, "I will find a way to do this." And I was fortunate to be able to talk to another colleague of mine who was an OB/GYN physician and ask her, "Would you volunteer with me four hours a week to do a coposcopy clinic?" And she said, "Yes." I said, "I've run clinics before. I've seen 60 patients a day in inner city, the ghetto in San Antonio." I said, "You be there. I'll make it happen." She said, "Okay." So in these clinics, you could imagine that many of the women that I see, their first encounter with HIV/AIDS is when they're being diagnosed with PCP in the hospital and being told, "You have AIDS." So they're not happy to come to the coposcopy clinic because one of the reasons they're taking that coposcopy is to determine if they have cancer or not. So our women usually say, "I can't take one more piece of bad news, girl. I have CMV. I have neuropathies. I barely can walk. I'm trying to take care of my mother, my sister's child. She's in jail. I'm trying to work, and now you want me to take a coposcopy, and that I might have cancer? Shoot me!"

There was a woman, a young woman, who came and said — I usually as I intake them say, "Do you know why you're here?" Some do and some don't. Again, we volunteer, so we can be a little bit slower in trying to work with the women in this clinic. When I explained the procedure, she said, "I want my spouse in there and my mother." I said, "I understand." I said, "Well, I don't know if the room is that big. Second, I have to talk with the physician. And third, you know, I usually don't like spouses because when they faint, I'm not picking them up." She said, "I understand," she said, "But I've got to have one of them." I said, "Well, let me talk to the doctor." So I went in and talked to the doctor because we're trying to be sensitive.

It's not just about color; it's about the person's life experience. What are they comfortable with, and can I accommodate? I think that's one of our roles as providers. That doesn't happen. So I talked to the doctor, and I said, "Listen. Here's the situation. I think I can handle the husband if we can sit him down next to her. If he freaks out, we'll just have to tell him to shut up or lay down or something." She said, "Okay, have one." And so I came to tell the family, and the mother said, "I'm going to be right out the door, and I’m going to come in and get your BEEP if I hear screaming." So I was like, "Okay. Okay. Okay, we can get this done." So we brought in the husband, and I said, "Sir, you know, we're going to do this procedure. Have you ever been in a room when a woman's either having a pap smear or a baby?" He said, "No." I said, "Okay. If you feel faint or sick and you fall, don't feel that I'm going to be not caring, but I will not stop the procedure. I need to complete it." So he sat next to her and we began the procedure. And during the procedure, he kept saying, "Oh, stop crying. You're not a baby." And the doctor said, "That is not support." But I think what we learned in that scenario, and what he learned as a partner, is the consequences of our actions. And sometimes as providers, the most teachable moment, the most preventable moment, the moment for that whole community is what happens when we have community people come in and how we treat them and what they will go and say. And so we got through the procedure, and it was difficult for this young girl. And everyone experiences—and people who say, "Oh, there's no feeling down there in that cervix," that's bull because people in their mind feel the pain. And if they feel it in their mind, it's going to be difficult for them. So we got through the procedure.

Next, the woman who could not speak English and was left in the stirrups for three hours. When we do the coposcopy and we find that there may be cancer, then they're sent on to have conization of those cells. And we don't do that at this clinic, so we refer them to the different hospitals. And she was sent to a hospital and was to have the conization and was on the stirrups for three hours waiting. She got down herself and said, "Listen, I've been waiting for three hours." They said, "Oh, an emergency came up. You need to come another time." But this happens. It's not just here. It's in many places. The woman who had borderline mental retardation and people who were insensitive to her, we're still trying to find what happened to her. The woman whose mother died of ovarian cancer, and if it wasn't for the persistence of some of our clerks, it took us 20 times to get her to come into the clinic. But when she was first told that she needed to have the coposcopy, somebody at that time should've said, "What does this mean to you?" because her mother had died of ovarian cancer and she was scared to come in. And you see familial tendencies, and we did do the procedure, and was found to have early cancer. But we can do something about it. She doesn't have to be the case of her mother.

The women who were starving in the nursing home. This woman was going to come with me today, but she's having trouble getting teeth. And she said, "I just can't speak out correctly, but tell them my story." She's HIV infected, and this was before heart therapy, so it was only mono therapy. She got very ill, and her family had to put her in a nursing home. And she begot contractures, wasting, and she was dying. But her sister began to come to see her and just kind of give her sips of water, and she began to get better. However, she couldn't speak. So every day when the trays came—and they were in a room with four other people with HIV—the trays would come and the trays would go. No one would feed them. So she was cognizant she was getting better, and she realized, "I'm going to die of starvation, not of AIDS." But she couldn't speak. Her sister then came a little bit more and tried to feed her, and she began to be able to talk and say, "I'm hungry. I'm hungry." But can you imagine that they weren't—and these were people my color, your color. They would take the trays away. As she got better, she began to advocate for the other HIV infected patients who could probably eat, and they discharged her because she'd become a nuisance in the nursing home.

A couple of things I'd like to leave you in the time that we have. What can we do? What I'd like to charge each one of us, professionals, people who are peer outreach workers, is if you can give three to four hours a month in your community, because if you wait until the government funds all the things we need, our communities will be dead. So I'm saying three to four hours, and let me tell you when you know you're really volunteering. I volunteered at a juvenile detention center, and it was hell because I didn't know really how to work there. But that was a need I had in San Antonio. I came home one day, and I told my mother, "It's not getting into these kids. I don't know why I'm there." She said, "What'd you do extra?" I said, "Extra? I'm already in there, locked up with them, trying to explain. They don't want to listen." She said, "Well, it's the extra that made the difference. The rest of the time, you got paid and paid well while you were doing your work. What'd you do extra?" And that's what I'm saying.

Those of us who live the lives, especially vulnerable and minority communities, we know. We can flex the sensitivity, but we need to be there. We need to be there in those clinic offices in our communities, just three to four hours. And I titled my talk, and I want to tell you the title here at the end, "Will You Stand in the Gap?" I would like to leave you with the words of one who stood in the gap, not just for women, but for all of us living in the United States. As long as there is poverty in the world, I can never be rich, even if I have a billion dollars. As long as diseases are rampant and millions of people in this world cannot expect to live more than 28 or 30 years—and we're talking about our colleagues in Africa and South America, in India—I can never be totally healthy. Even if I just go and get a good checkup at the Mayo Clinic, I can never be what I ought to be until you are what you ought to be. This is the way our world is made. No individual or nation can stand out boasting of being independent. We are all interdependent. Thank you very much. Can anyone remember who said these words? He was a great friend of all of us here, and that was Martin Luther King, Jr. Thank you.