When did you first realize that you were African American?
I first realized I was black from my first notion of realizing that I was a person. I think five, six. I have family members that look Caucasian and I saw the better treatment they got and the better lifestyle they had. Nicer clothing, prettier hair. Oh my God! I so dealt with that shit! I tell you what, a girl loves her weave, she loves her natural hair at times. But you know what, today it's like, with all of these things that we have, I can still be me. My hair doesn't make me. My color doesn't make me. My color is who I am. I am black. But that's not who Michelle is. You don't identify me because of the color of my skin, the length of my hair, the shape of my body -- no! Identify with who Michelle gives you. And who I give you is who I am.
To what extent have you experienced racism in your life?
In many different capacities. Through work, through public transportation, through health care.
How have you learned to deal with it?
I call it when I see it. I don't have a problem saying to someone, "Is it because I'm black that you're doing this -- or is it just because you're a mean, obnoxious person?" I gotta call it. I would say, "I'm asking this because I want to give you an opportunity to explain to me why you didn't want to write the prescription for me, or you're giving me this second-class drug, when you know yourself that my insurance covers this." That's the kind of stuff that I would say.
What is the biggest challenge facing African Americans today in terms of HIV?
We feed into victimization. I still hear from a lot of my brothers and sisters of color, "You know, because I'm black, the man -- the white man did this to me, the white man did that to me." Well, the white man is going to continue to be the white man. Strive for the best that you can because you can be the best. You can! I am an immigrant in this country, surviving without a green card. I have made this choice in my life that I am not going to let the system victimize me. No way!
What HIV risk factors are of special concern to African Americans?
Poverty! Poverty is one of the main risk factors out there today. And you know what? The poorest person can have the richest outcome in life. Believe it or not. But we just gotta be able to believe in ourselves and believe, "You know what? I deserve better." Too many of us have become comfortable in this way of life.
I have these in-depth discussions with my kids and my nieces and my nephews and even their friends. I say to them, "Why do you guys walk around with your pants falling off of your butt like this? Do you know that's a look that came from the prison system? Why do you want to perpetuate a look like that?" And they say, "Well, we're in the ghetto -- what else you expect?" I say, "You know what? Because you are in the ghetto doesn't mean you have to act like you're in the ghetto. I'm in the ghetto, but when I walk out of here today, honey, believe me, they're going to look at me. If I have to be in a room with President Bush, guess what? He's going to look at me and call me Ms. Michelle Lopez! Because he wants me to call him President Bush, he's going to address me in the appropriate manner. He is not going to look down on me as this poor black girl from the community. No! Because I'm going to hold my head up high and I feel just as equal as he is."
Are there any specific aspects of African-American culture or identity that give you strength?
Oh yes, indeed! The ancestors that have opened doorways that have paved pathways for us. Sometimes I say to myself, "Harriett Tubman and Martin Luther King and Malcolm X." These are just well-known and prominent ancestors, but we have ancestors who our children have yet to learn about, who put up a fight and did not let themselves be victimized.
You know, the opportunities that we have today our ancestors didn't have, but they paved the pathway for us. We have become so complacent now. We have lost some of that. So for me, truly, I uplift my ancestors every day. I embrace them and thrive on their strength. I just want to go around the country to all my poor black brothers and sisters and say, "People, you are its citizens. Make America respect us for who we are."
What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?
Equal access for all. We used that terminology for a short period of time and then we stopped. I shouldn't have to wait until there is something called AIDSwatch or the Congressional Black Caucus is having this meeting. Each and every day, we should be able to say to our leadership, "I need equal access." If it's prevention, treatment, services, whatever, it shouldn't just be one part of the country -- it should be equal access for all.
Do you think the Bush administration is doing enough for the black epidemic?
Definitely not! They have turned their back. For us to have a white president or vice president say, "Oh, do we have a crisis going on in the African-American community with HIV and AIDS?" He questioned that! This man literally stood and said it at a debate. So what are you telling me here? You have closed your eyes on a certain aspect of your community because you don't care!
African-American communities still today do not understand the power of the vote. Because, you know, if I had an opportunity today to vote, believe me, I would be one fierce voting person. People do not understand that if, within six months of someone going into office and you voted for them and they have not addressed one of the things that they had said while they were campaigning that they were going to do, they have an opportunity to get that person pulled.
We should be teaching black America to understand the power of a voting citizen. These are the things in our poor minority communities that we don't have in there.
How would you grade Bush's performance?
Oh, my God! Can I tell you something? His performance is excellent! It's excellent to the population who put him there. The people who did not vote for him -- OK, we did not put him there. The people who put Bush there -- guess what? He's servicing their needs.
What are some of the main myths about HIV that you hear in your community?
That there is a cure. That celebrities like Magic Johnson have a cure and they're just not giving it to us because we're poor people. Or that the virus was made in a lab. Or that there is just one pill that we can take that can cure it.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
More and more, I am really seeing the complacency with my people. They are beginning to accept HIV as another way of life. Because we are poor black people, this is something that should happen to us. But my hope is for us to realize that it's not that this is another way of life for us.
What has been your experience with HIV treatment?
I have gone through a learning process where I came from nothing and I am finally beginning to gain something. I have better doctors today. But yet still I know if I compare myself to a gay white man, I can tell you he has better access to specialists, better opportunity to get appointments in a timely manner, better opportunity to have doctors who will work with him and have dialogue with him and be able to give him information he can really put to use. You know, there are certain tests that, as a woman living with HIV today, I should have already had. I haven't. I am nowhere within the range and the reach that many gay white men with HIV have.
Do you have any other illnesses that have complicated your health and your treatment?
I am diagnosed with endometriosis [abnormal growth of tissue outside the uterus, causing chronic pelvic pain] and fibroids. So I live a life walking around in a lot of pain.
Have you been really ill as a result of this or HIV?
Not within the last two years. I think I have gotten better control over it. Also too, I am someone who does have herpes. I get outbreaks. Again, I don't know if it's just that I don't have enough of the knowledge base or preventative care, but there are times when I go, "Oh my God. I'm in so much pain."
What HIV medications have you been on?
I've been on quite a bit of the cocktails. Within the last year I have weaned myself off mental health meds. My spirituality today has played a very large part in how I handle situations, or what I tap into when I begin to feel overwhelmed.
How do you feel about your meds now?
I understand it a lot better today, so I make my treatment choices with the support of my doctor. It's a partnership.
Any persistent side effects from the meds?
From GI [gastrointestinal] discomfort to skin reactions to neurological reactions. Right now, in fact, I deal with a lot of pins and needles running through my arms and the right side of my body.
I had a negative reaction to Crixivan [indinavir] when it first came on the market, and also to Sustiva [efavirenz, Stocrin]. I almost had my children taken away from me because I had a neurological reaction to Sustiva and the social worker just had no clue that this was a new drug the woman is taking, and one of the side effects is that it will affect her neurologically. I was put in the psych ward for eight days. Thank God, my children told the social workers, "Ya'll are not taking us nowhere. Mommy's taking new medications and Mommy's going to get better."
She even commended me afterward. She said, "You have opened up my eyes, because we're going to work with other women who will be taking the same drug, and thank you for giving us a chance to really learn about this drug, because we would have taken these kids away from you."
How would you rate your ability to take your meds on schedule?
I am 95 percent compliant.
Do you have any special rituals or preparations that help you remember to take them?
I put my medications right by my makeup because I love makeup! This is a lipstick lesbian!
How did you choose your current doctor?
I chose my doctor based on me getting their professional background, their knowledge base, and their history of treating people with HIV.
How often do you see your doctor?
I see her every three months.
Do you think you are getting the best care possible?
I know my care can be a lot better.
Is your doctor an African American?
No, she's Caucasian.
Do you think an African-American doctor can understand and treat African-American patients better?
We need to have more African-American doctors who specialize in HIV. I have interacted with some African-American doctors who treat people with HIV, and I gotta be honest, they were not nice. Their bedside manners were horrible. There's a class thing that goes on in the African-American community. When you are a "professional," a classist thing comes up.
I interact with doctors of many different backgrounds. I have interacted with many African-American doctors, and they are very classist. They talk down to us. They wouldn't interact with us. But I will tell them in a minute, "Excuse me. Hello! Keep that class stuff. Take it someplace else, because right now when we're at the table, guess what? I am your equal." So, I address it when I see it.
What kind of relationship do you have with your doctor?
I share with her my feelings toward my care and treatment. If I don't understand something, I tell her, "I look to you to explain this to me. So if I come to have a visit with you and you're just sitting here with a piece of paper in front of you, you know, where is my chart?" And if she doesn't have my chart, I question it. "How come you're here providing care for me? Do you remember what we discussed the last time? Do you remember the last blood work? I need to have a copy of that. And I need to be able to discuss this." I want to know everything that she's learned about me. She's going to explain it to me.
Do you have a particular health regimen that helps you stay well?
My mental health and my physical health, they both must be within the same wavelength because I'm not just going to treat the virus. I am not a virus.