The current edition of POZ magazine has an article titled “All Grown Up with HIV”. It features 4 individuals who were infected with HIV as youth. Two were infected perinatally and two were infected behaviorally as teenagers. I’m featuring the 2 individuals who were infected perinatally as that is the topic of this blog.
Thirty years into the epidemic, a new crop of kids faces adulthood—with HIV. From babies born with the virus to teens who acquired it behaviorally, members of this new generation struggle to navigate survival while making their way through the world. The stories of these four brave young people are examples for how to succeed in spite of HIV. They also serve as cautionary tales, reminding us of the price we pay for not teaching our children well. Let lessons be learned.
Lafayette Sanders, 24, West Philadelphia,
Perinatally Infected
Having found power in disclosure and self-advocacy, musician Lafayette has found a new life. Now that he has broken down his own stereotypes about HIV, Lafayette is trying to help other people do the same.
I was in the doctor’s office. I was 13; it was a few months after my mother passed away. My grandmother took me for a checkup, and I was then told about me being HIV positive. My grandmother knew what I didn’t: My mom died of HIV, HIV that she passed along to me. They told me, and I took the meds but didn’t learn anything about HIV. At that age, I had no idea about the stigma or life spans. Having to take medications was like taking vitamins: You don’t know what it’s for, you just do it ’cause it’s good for you.
And then high school hit. I started to hang around kids my age, and everybody was talking about sex, and HIV came up in the picture. I wanted to tell them I was positive, but I didn’t know that much about it to tell and to be able to defend myself. I didn’t want to be looked at as different. So I didn’t disclose. There were so many feelings, and I was so angry for so long. It took me a long time to get over the anger at my mom—that she didn’t tell me herself, when we were so close and shared everything, and then to find out this big thing and to deal with it on my own. I was angry at her, God, myself, everybody. And then there was my grandmother. My grandmother was the primary guardian to my sister and me after my mother passed. My sister, who is not HIV positive, was too young to remember my mother’s death. My grandmother, who is a sweet and caring woman but also very traditional, put me in a box of fear. She made me believe that disclosing my status would change how people treated me, how they looked at me. It wasn’t true, to me—I knew someday people would understand and accept me for me.
When I was maybe 17 or 18, I woke up every day thinking about HIV and [I wanted to make it go away, to pretend it wasn’t there] so I stopped taking medication. I would hide it, pretend. I was young and irresponsible. And I was having sex.
The turning point came with my last two girlfriends. I disclosed to [the first one] right off the bat. Still we were reckless and irresponsible, and she got pregnant. She had a miscarriage, and to this day she’s negative. Second relationship, almost the same thing. She had an abortion. I was sitting in an abortion clinic, and I thought, “How the hell did I end up here? I’m reckless, and the people I’m with are reckless.” That was my wake-up call, the moment of “You have to get your shit together.”
I hooked up with iChoose2live [a youth organization designed to encourage self-esteem and awareness about HIV and other issues]. I thank God for everyone He has placed in and out of my life. He uses who He chooses when He chooses. If it weren’t for me meeting [hip-hop artist] Lee Mekhai at a show in Philly, I wouldn’t have found out about iChoose2live and the founder Shenille Melton. That opened a lot of doors for me as far as reaching the youth.
Since I had already taken a course for certification in HIV Peer Education through Philadelphia FIGHT’s program, Project TEACH, I thought about disclosing my status. For 10 years, my grandmother was the voice discouraging me from disclosing. I was secluded. She drilled into me that disclosing was not safe, that “the neighbors are gonna look at you this way, no one is gonna look at you the same way or accept you.” But as I began to educate myself about the virus, how it works and what it does, I began to lose the fear of disclosing. Then after I linked up with iChoose2live, I came out in a big way through interviews and the work [I did with that group].
My grandmother kicked me out when I told her I would be doing an open interview about me being positive with The Philadelphia Inquirer, which [was published] on September 13, 2010. [At that time,] I had no job, no money, I was struggling. But a lot of positive things came from my disclosure. People emailed me to thank me for being honest about my HIV status. I was intrigued and blessed that my story could help others. I started speaking to groups at the children’s hospital. Kids looked up to me.
I’ve learned that kids in public schools aren’t being taught what they really need to know. HIV is that disease that’s swept under the rug; no one talks about it. And youth are spreading [the virus] because they’re uneducated, misinformed and not being reached out to enough. I honestly think there should be mandatory classes in all middle schools through college for educating about HIV/AIDS [and other sexually transmitted infections].
Positive people my age need to be out there. You can’t have a 48-year-old man talking to kids about this. No one listens. You need someone like me, someone who is living with [HIV]—then it becomes more real. It’s a great feeling to be able to do that. And that’s just me! One person. Imagine if everyone was doing it, if everyone got together. We may not be able to stop this pandemic, but we can inform, educate and empower, and we can slow down the rates of HIV transmission.
I would like to write a book about my life living with HIV and just my life in general. I know my story and experiences within these past 24 years can help educate, empower and change other people’s lives—people of all ages. My story will heal lives all over and most importantly let everyone know the power of God. He’s the only reason why I’m still alive and healthy.
I’m looking forward to the future, staying healthy and changing people’s lives.
Paige Rawl, 17, Indianapolis, Perinatally Infected
She is a high school student, an athlete, a teen. Having encountered and overcome enormous stigma, Paige has flourished—making a place for herself in a world that hasn’t figured out how to make a place for youth living life with HIV.
My name is Paige, and I’ve been positive for 17 years. My mom unknowingly passed it on to me, and she found out her status right before I turned 3. She contracted the disease from my father—we’re not sure how or when he contracted HIV. That’s just the way it goes.
My mom told me I was positive when I was in fifth grade. But I didn’t get it. I took the pills because that’s what you do when you’re young and your mom gives you pills. And then middle school happened.
In sixth grade I confided in my best friend; I told her I’d been HIV positive since birth. Within two weeks, she had told her sister and other people, and they told others, and eventually the whole school knew. Everyone. People threatened to beat me up; they left a note on my locker saying “No AIDS at [school name].” They gave me a nickname: “PAIDS.” They told each other not to drink after me, as if HIV was contagious [that way]. I went from [being] popular to having no friends.
In eighth grade, I made the soccer team. I was going to be part of a team. Then someone told my coach I had AIDS. At our first away game, my coach approached me on the bench, in front of other players, and asked, “By the way, I heard that you have AIDS. Is that true?” I said no, because I don’t have AIDS, I am HIV positive and there is a difference.
I was so upset. This was a coach. Someone who should know. I told mom, who confronted my coach at school. She admitted to asking me and went on to say, “The soccer team could use my HIV status to an advantage, and the other team will be afraid, and I can score goals.” I withdrew from the school and finished out my year with homeschooling.
My mother has been so supportive. And my family. I didn’t have to disclose to them; my mom told them before she even told me. But you need support of different kinds. Since the bullying, the coach, the discrimination, I’ve started seeing a counselor and started taking an antidepressant. It’s OK to look for help, and it’s OK to get help.
I realized that I can help other people too. I wanted to take a bad situation and turn it into something good by helping others know about HIV and the precautions they should take. So I became a peer sex educator and a certified HIV/AIDS educator through the American Red Cross.
I also started looking for support groups and even tried to start one. I searched the Internet, I asked questions, and I was referred to Camp Kindle [a free summer camp for kids living with or affected by the virus]. Meeting other kids [like me] has given me people to talk to, people who can relate to what I’m going through.
These days, I am open about my status to everyone. I take the time to speak to my peers, raise awareness and share my story. Funny, after disclosing to my former best friend in sixth grade and it spreading through the school, it just became easier to tell people who didn’t already know. For the most part, there’s a positive response. The fear that I should not have disclosed my status so soon just doesn’t exist anymore.
I know firsthand that there are still big misconceptions out there about how you can and cannot contract HIV. [We need] more education among youth in the U.S., and there should be more support groups. Youth need to see themselves reflected in what’s taught, in the information they are given.
The hardest part about living with HIV is the stigma that goes along with it. But I have hope. Two years ago, I was the freshman class president, on the JV cheerleading squad and on the soccer team. Last year, I was part of the student government and on the varsity squad. I volunteer, I share my story, I travel. I have hope.
This adorable little girl has been in care since 2007, as her birth parents passed away and her grandparents were impoverished. She is an observant little girl and is extremely shy and scared of strangers, as noted by the Waiting Child Program Manager on a March 2011 visit. She has not had any formal education, but appears to be a bright child and is starting school in May 2011. Her motor skills are appropriate, and her language is on track, though she does not talk much. She tends to lack self-confidence and need a lot of encouragement to try things. She is HIV positive and responding well to medication. She is described by her caregiver as generous and caring and is mostly independent in her self-care needs. The right family for this child will understand the medical and social ramifications of HIV, and be able to advocate appropriately. In addition, they will need to be very patient with the transition into their home, as she will likely fear them and withdraw. She will need a calm, understanding and encouraging family to help her thrive in a completely new environment. http://holtinternational.org/blog/2011/11/with-room-to-grow-she-blossoms/
It’s hard to find recent scientific and clinical studies about life expectancy of people living with HIV/AIDS in the western world. Keep in mind that life expectancy varies so much depending on when a person is diagnosed, how diligent the patient is with medication compliance, as well as their social situation (nutrition, street life, drug use, accessing medical care, mental illness, prostitution, co-infections, etc). 
This pretty little girl is sociable, kind, affectionate, active, open, cheerful, and easily comes in to contact with both peers and familiar adults. Her development is consistent with her age. She is developing cultural hygiene practices: careful eating, uses a napkin, washes herself with a towel, asks to use the potty, and can partially dress and undress herself. She is developing well physically. She quickly assimilates new ideas, although she gets distracted or bored in the class. She has a good memory. She loves reading books with adults, looking at pictures, playing with dolls, and playing board games. The loves to swing, play in the sand box, and draw with chalk. She tends to be independent and is happy to perform tasks. She was born in May 2009. Of course such a clever and beautiful girl should have been taken into a family long ago, but she has an diagnosis which has prevented her from finding a family in her country of birth. We do not believe it is HIV, but something similar, perhaps Hepatitis.
