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True Colors of the AIDS Epidemic

Trekker Stephen takes it all in at the Carson National Forest

I cried last night.

I wasn't expecting to. I just did. I watched the Oscar winning documentary, Common Threads: Stories from the Quilt, and it all came out - tears, memories, and emotions. It was hard to catch my breath as I watched and listened to the stories of those who have lived with and died from Acquired Immune Deficiency Syndrome (AIDS) in the United States. There is no other way to write it: AIDS is a tragedy. It is a worldwide epidemic that has taken many thousands of lives. It is not easy to talk about and it is not easy to learn about, but it always present, and the past twenty years have shown us that it is not going away.


A quiet moment in a crazy week

So, let's get serious. AIDS is a disease brought on by the HIV virus. The virus attacks the human autoimmune system and makes it difficult for the body to protect itself from illness. It is a blood born virus that first became a health issue in the U.S. in 1981, when 335 Americans died from mysterious symptoms that baffled physicians.

The street, the district where it all started

The first deaths from AIDS occurred in San Francisco and ravaged the gay community in the Castro district. From that point forward and throughout the 1980's, the AIDS epidemic was considered a primarily 'gay disease'. Although most of the initial deaths from AIDS were centered in the gay community, it also affected intravenous drug-users who shared needles and hemophiliacs who had received infusions with untested, contaminated blood.


By 1987, AIDS was spreading rapidly, and 46,000 Americans had died. Despite indisputable evidence of a national health crisis, there was no sign of support or recognition of the epidemic's magnitude, from the US government or the National Institute of Health.

In May of that year, Cleve Jones was sitting with Mike Smith on his back porch in the Castro district. There, the two of them talked about the 1000 people who had died from AIDS within a ten-block radius of where they were sitting. "Almost everyone knew someone who had died from AIDS," Mike told me, as were sitting together in a corner cafe. It seemed like everyone was dying.

Motivated by fear that history would forget the important people whose lives had been taken by AIDS, both Mike Smith and Cleve Jones organized the AIDS Memorial Quilt project. From Mike's back porch, the two of them invited the families and friends of people who had died from AIDS to memorialize their loved ones in a quilt panel. In order to preserve the memory of their loved ones and let their stories be told, they promised to sew these panels together and display them during the annual March on Washington.

That's Stephen with one of the founders of the AIDS quilt, Mike Smith!!!

"We were frustrated with what was going on in the rest of the U.S. We wanted to send a message out from the Castro to combat the assumption that only gay people get AIDS," Mike said. "We wanted to get people talking about and sharing their experiences with AIDS". When they sent out their initial invitations for quilt panels, they had no idea their project would become so large. Parents and friends of AIDS victims flooded the Castro post office with overnight mail and what started out as a local project quickly spiraled into a nationwide campaign.

The AIDS quilt (a.k.a. The Names Project) has become the largest grassroots community project in the world.  If put sewn together today, it would extend for more than 42 miles

The AIDS quilt is a moving experience. Mike told me that at its first display in 1987, "The AIDS quilt touched people in a way that nothing else had. It changed the vocabulary around AIDS and set a common language amongst people that AIDS is not just a gay issue." It brought it home for people and made it real.

As the AIDS quilt was being laid out on the national Mall in Washington, D.C., a different, more vocal sort of protest was going on across town in front of the Food and Drug Administration building. There, a group of ACT-UP activists were protesting the FDA's detrimentally slow procedures for AIDS drug testing. According to ACT-UP protester, John Underwood, the organization primarily consisted of gay people from throughout the U.S. who "felt like their community was dying off and knew they had nothing to lose." Direct action and protest became their only means for survival.

"When you walk through the rows of the quilt, it's impossible not to come out a different person"--Mike Smith

The combined effects of ACT-UP's rage and of the AIDS quilt's compassion effectively brought the reality of AIDS to the forefront of US culture. Finally, "the issue of AIDS became personal to a lot of people," said Mike Smith. The American people began to open their eyes to the AIDS epidemic and to realize that their government had been criminally negligent in its attention to a national health crisis. The national attention from community based activism forced the US to reckon with the epidemic and, in 1988, to launch a nationwide public health campaign against AIDS, the last developed nation in the world to do so.

All good backbones could use another vertebrae.  Are you ready?

Even in 2001, AIDS continues to expose a lot of social problems in the U.S. When I asked how the disease affects Americans today, Mike Smith mentioned the new advances in drug treatment and said that "AIDS has become a manageable disease for those Americans that can afford it. With the right medication, people can live for ten to fifteen years. AIDS is still a death warrant for others. Most of the people who die of AIDS today are in the inner city and poor and don't have the resources to pay for their care."

AIDS is very much a children's issue as well. Today, I spoke with Kristen Klaasen, the director of a Colorado support group for children and families with AIDS, called Angels Unaware. She told me a story about a three year-old girl with AIDS whose neighbor, upon finding out that the little girl was infected, forbid her from sitting on her lawn. The neighbor was afraid that the little girl would infect her with AIDS.

Trekker Stephen gets chummy with John Underwood, an 80s era ACT-UP protester

Sound bizarre? Well, "It's stunning how even today people are afraid of it," Kristen said after relaying that story. "More people have friends or know families with AIDS than they think," because a lot of kids are afraid and ashamed to tell anyone that they or their parents have it. That's why Kristen and the rest of the volunteers at Angels Unaware believe it is important to open up a dialogue about AIDS and to bring awareness to the public. All kids living with AIDS want, Kristin says, is to be around other "kids who know what is going on."

What will it take for that to be possible? Simple, remember the AIDS quilt. The AIDS quilt started out as a small idea on one person's back porch and has grown to become the largest participatory art project in the world. The ideas and persistence of just two people now memorialize the lives of over 300,000 people all over the world. Mike Smith considers himself an unlikely hero, but being involved with the AIDS quilt has proven to him that EVERYBODY can make a difference. "If you have a good idea, don't sit on it. Run with it. You can change the world. We did it."

And yes, so can you.


Please email me at: stephen@ustrek.org

P.S. There are a number of ways to get involved with AIDS education and activism. The Names Project AIDS Memorial quilt realizes the tremendous impact that the quilt has on people's lives, but students themselves must stand up and invite the AIDS quilt into their schools. You can lead the way by going to the AIDS Memorial Quilt newsite.

You can also take part in AIDS Walks throughout the country to lend your support or help raise money for AIDS education and research. Find a listing of dates in your city by going to the Aidswalk site!


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