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Growing Up Positive

Nikki wraps her arm around Angel in a gesture that is evident of a long and caring friendship. These fifteen-year olds swap stories about surviving freshman year at their respective high schools. It’s August at camp, and in just a few weeks they’ll be back in the grind. Angel has grown tall and shapely since last year. Nikki jokes, “Girl, give me some of those looks!”

Eddie chats with L. J. on the sidelines of the basketball court. It seems that Eddie will be attending the same inner-city Washington, D.C., school as L. J. in the fall. A cloud of uneasiness settles between these camp acquaintances for the first time since they met several years ago.

Andre is an energetic eleven-year-old with a football-player’s body and a baby face. He muscles his way into the line and teases the other youth. It’s hard to be angry with someone who smiles and laughs so much, but his aggressive behavior has earned him a “final warning” from the camp director.

These young people are typical urban teens — gifted, sassy, growing, and searching — and like the other campers at Safe Haven Maryland, they share another commonality: they’re growing up HIV positive. They don’t look sick, and much of the time they don’t feel sick. But these kids — and their family members, communities, and our society itself — are not well.

Good News
Twenty years ago, as AIDS began its tear into pockets of American society, we saw a frightening and devastating disease wreak suffering and death. Children became infected through tainted blood transfusions and withered before our eyes. A young boy, Ryan White, and his family fought community hostility and brought to national consciousness the need for education and tolerance.

Because of advances in the treatment of this viral infection in the 1990s, Americans with HIV are living longer, healthier lives. The National Center for Disease Control (CDC) estimates that more than 405,000 Americans were living with the HIV virus in 2003.

In 1991, the CDC estimated that from 1,000 to 2,000 infants were being perinatally infected with HIV annually in the USA. As a result of a national effort to screen and treat HIV-positive mothers and newborns with zidovudine (AZT), the rate had dropped by 67 percent in 1997. The District of Columbia Department of Health notes a 91 percent decline in newborn infection in the past five years. Good news!

What we have now is a “bubble” of young people born between 1988 and 1998, infected with the virus but having benefited by anti-retroviral treatment —  living, not dying. Each year we hold camp, the average age of our campers goes up and the average state of their general health also sees improvement.

Secret Lives
While these children live burdened lives, they’re generally not in sickbeds. They attend school while their infected parents try to blend in to workplace and community. With but a few exceptions, their HIV status is unknown to everyone but the closest of family and their clinicians. And they and their family members expend considerable energy keeping their secret.

“I’m moving across town,” shared the mother of one of our campers after some neighbors recently discovered that HIV affected her household. “I lived in this neighborhood for years and always had friendly relations. The other day, a neighbor pulled her child away from me — like I had the plague. I can’t risk losing my catering business because of people’s ignorance. The last time my son was in the hospital, they asked me, ‘How’s your son... We haven’t seen him lately?’ and I told them he’s away on vacation.”

As our campers grow into their teen years, they become acutely aware of the stigma and fear that surround their situation. While all teenagers struggle to fit in and be accepted by their peers, these kids have an additional challenge that isolates them when they most need support. What if someone at school figures out the association? The risk looms large and is reinforced by the adults in their lives.

As safe as we try to make their week of camp, once they return to their communities, it’s another story. Many of the kids have an unspoken pact to not recognize or associate with each other if they cross paths outside of camp. We can’t even give them a souvenir all-camp photo to take home or hang in their locker.

Affected by HIV
One of our volunteer camp counselors arrived at training wearing a bright red T-shirt from a popular AIDS awareness campaign. On the front it screams “HIV Positive” and on the back it says “You’re either infected or affected.” What this slogan implies is what we see all too well in our camps: the impact of HIV and AIDS goes way beyond epidemiology.

Our campers are affected as well as infected. Many have already lost one or both parents to death or are living with family members who are chronically ill. Even when an infected parent is doing well, children are burdened with worries about them. Poverty and social instability are frequent companions in HIV-positive families. Because a growing trend in the transmission of the virus is through injection drug abuse, some of our campers are children of incarcerated parents, adding another layer of stigma to their lives.

At its 2005 meeting, representatives of the Children Affected by AIDS Camps Network discussed the changing face of their programs. As immediate health concerns are being managed through improved therapies, these youth and family programs are changing from “medical” specialty camps to a focus on social and behavioral needs. Issues such as sexuality and marriage, planning for career/college, improving interpersonal skills, and managing grief are the topics that are emerging amid the typical recreation and retreat programs. Kids affected by HIV certainly need support from medical teams, but their other needs are just as great.

Positive Ministry
Caring for persons living with HIV/ AIDS — whether children or adults, locally or globally — begins and ends with the realization that we are all affected and that our human community must work for a cure and for healing. It’s not about them, it’s about us.

The United Kingdom’s National AIDS Trust has an active campaign to combat prejudice and misunderstanding. Slick posters and flyers get in the public’s face, bearing slogans like “Not until you’re diagnosed HIV positive do you discover how sick people can get” and “Could you look me in the eyes if you knew I had HIV?” We know that in our own churches, prejudice and misunderstanding abound. This prejudice binds us — to sin — and we, too, are in need of healing.

Often, caring ministries develop around a relationship with an affected individual. Someone comes forward with a need — or is thrust onto the scene — and the reality of the situation touches others in a personal way. So, how do we have a relationship with individuals whose lives are secret and protected? How do we introduce this need in our congregation, knowing that it will inevitably open some of our own wounds?

As you might guess, one way would be to support a camp program for children and/or families affected by AIDS. There are a number of benefits for everyone. Lutherans have a strong commitment to the value of outdoor ministry and, in fact, house and/or help manage several of these camp programs directly. Other camp programs could benefit from the gifts that Lutheran camp or outdoor ministry leaders have to share. Congregation members offer all kinds of talents and experience from fundraising to activity leadership to nursing.

An interesting result of this albeit narrow engagement with the AIDS community is that, once folks become involved with our camp programs, they rarely stop there. Several camps, including our partner on the East coast, Safe Haven Project, Inc., are extending work to Africa. Many camp volunteers across the country are getting involved in public speaking and community education efforts. While they begin by engaging with a small segment of the population, they learn first-hand of the greater needs. The ripple effect can be amazing.

We suppose that within ten years we’ll be out of the AIDS youth camp business as we’ve known it, as our campers grow up alive and hopeful about the future. Perhaps we’ll see a cure that will kill this virus, or a vaccine that will at least prevent its spread. Perhaps enough people of faith will fuel an epidemic of love, tolerance, and support that will bring about a deep and lasting healing for us all.

Katherine Miller-Holland, an ELCA diaconal minister, is Coordinator of Volunteer Services and Camps for Lutheran Social Services of the National Capital Area.