Responding to AIDS
Preached at Hanover Street Presbyterian Church
On October 24, 2004
By Alice Goodfellow Davis
Texts:
Numbers 5: 1-5
The LORD said to Moses, "Command the people of Israel that they put out of the camp every leper, and every one having a discharge, and every one that is unclean through contact with the dead; you shall put out both male and female, putting them outside the camp, that they may not defile their camp, in the midst of which I dwell." And the people of Israel did so, and drove them outside the camp; as the LORD said to Moses, so the people of Israel did.
Revelation 21: 1-6
Then I saw a new heaven and a new earth; for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband; and I heard a loud voice from the throne saying, "Behold, the dwelling of God is with human beings. God will dwell with them, and they shall be God's people, and God will be with them; God will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain any more, for the former things have passed away." And he who sat upon the throne said, "Behold, I make all things new." Also he said, "Write this, for these words are trustworthy and true." And he said to me, "It is done! I am the Alpha and the Omega, the beginning and the end. To the thirsty I will give from the fountain of the water of life without payment.
Matthew 11: 1-6
And when Jesus had finished instructing his twelve disciples, he went on from there to teach and preach in their cities. Now when John heard in prison about the deeds of the Christ, he sent word by his disciples and said to him, "Are you he who is to come, or shall we look for another?" And Jesus answered them, "Go and tell John what you hear and see: the blind receive their sight and the lame walk, lepers are cleansed and the deaf hear, and the dead are raised up, and the poor have good news preached to them. And blessed is he who takes no offense at me."
Sermon Text
Be careful what you ask for: I asked the worship committee to designate a Sunday for AIDS Awareness, and they asked me to preach. They wanted to draw on my experience in AIDS. For over seven years in the 1990s, I worked for one of the largest and oldest AIDS Service Organizations in the country, Health Crisis Network in Miami, Florida. And for ten years I served as a leader in our denomination's efforts to respond to AIDS.
What you will hear this morning will be drawn from my experiences and from the stories of people close to me who live or lived with AIDS. We will look at responses to the plague of AIDS in light of today's Scripture readings and our common experience, and I will commend two types of responses to you.
Now if you are someone who is overwhelmed by how fast the years are whizzing by, cover your ears and don't listen to this next sentence. Next year it will be 25 years since doctors in San Francisco and New York started seeing rare cancers and rare pneumonias in young, otherwise healthy gay men. At almost the same time, these opportunistic infections started showing up in Los Angeles and Miami.
All the way back to 1980, the symptoms that later became known as AIDS occurred not just in gay men, but also in heterosexual men and in women. Most of these men and women, though not all, were poor, or they injected drugs, or they were in a relationship with someone who injected drugs. It would be fair to say that most persons living with AIDS were identified as being outside of the mainstream or even marginalized in some way. Because the gay part of the epidemic got most of the publicity, many people mistakenly thought that AIDS was a gay disease.
It wasn't until 1985 that scientists discovered HIV, the virus that causes the immune deficiency that we call AIDS. That discovery made it possible to develop a test for HIV, so then the blood supply began to be tested. That brings us up to 1986.
In that year my friend Alvia Palmer Michel was a very happy young bride. The next year her daughter Ricardia was born, and she was ecstatic to be a mother. Around that time, Alvia's beloved husband Richard got a cold he couldn't shake. After several bouts with pneumonia and many trips to the hospital, he was tested for HIV and found to be positive. He died a short time later. Alvia was devastated by the loss of her soulmate, the family's sole support, the man to whom she had been faithful. She never asked how Richard had become infected, and she never blamed him. The medical personnel asked to test her and Ricardia, and they were both HIV+ as well.
Ricardia was a beautiful little girl, cheerful even when she was suffering with the most gruesome illnesses. Alvia tried to make a serene and happy life for Ricardia. Alvia would get sick many times, too, and Ricardia would comfort her when she was dragged down. At such times Alvia called her Little Mommy. Ricardia lived to age five, then her little body could no longer withstand the onslaught of the many infections and the side effects of all the treatments.
Alvia took up painting as a way to work out her emotions during the time Ricardia was sick and after her death. I went to two different exhibits of her paintings, and she gave me two originals. Alvia would go anywhere to help the public become aware of AIDS. She spoke in front of groups, on TV and radio. She was flown to New York to appear on a national talk show once. Finally, after 16 years of living with HIV and 12 years of being diagnosed with AIDS, Alvia died in 2002.
She lived through the years when the public face of AIDS changed from being almost exclusively gay white males to being increasingly minority and female. Alvia and I and the staff and clients of Health Crisis Network were in a rich multicultural environment, where we got to know people of completely different backgrounds. We learned from each other, laughed and cried together and were enriched beyond measure by that community.
Now we turn to responses. The first response to AIDS was fear. In the beginning there was this unexplained epidemic, and people didn't know how it was transmitted. Some hospital personnel would not go into the rooms of AIDs patients. Their families were afraid to visit. People were afraid to touch a person living with AIDS.
When the Hebrew people were on the march into the Promised Land, what should they do about leprosy? (As an aside, a little knowledge is a dangerous thing. When I was considering how to preach on the topic of AIDS, I had in mind that leprosy would be the perfect Biblical counterpart. Once I started studying, the very first thing I learned from the commentaries is that the word leprosy was used in the Scriptures to refer to any number of skin diseases, some serious, others minor. It didn't necessarily mean what we call leprosy today.) In the Numbers passage, which Larry read earlier, the children of Israel aren't taking any chances. Keep those lepers outside the camp.
One can have a certain empathy for the early fear of the unknown plague, but with AIDS the fear continued afterwards, when the information about how HIV is and is not transmitted became widely available. Remember the child, Ryan White, who got AIDS from a blood transfusion? He was prevented from going to school because parents of other children were scared without reason, and gutless school authorities who knew better gave in to the fear rather than educate the community.
In my time at Hanover, I have not experienced much fear of the unknown; that response we have largely done without, God be praised.
The second response, Stigma, derives from the first. From the very beginning of AIDS, and continuing even to the present day, there are people who label persons living with AIDS as bad. Because sex and injection drug use are the main transmission routes of the virus, some people feel free to judge persons living with AIDS. Blaming and labeling are also common because the epidemic is perceived to be gay. People who are violently anti-gay use AIDS as an ignorant justification for their hatred of all homosexual persons.
Blaming the sick person was common in the Scriptures, when people did not know the origin of diseases. Remember the question asked of Jesus in John 9: 2, "Who sinned, this man or his parents, that he was born blind?" Alvia, who was very religious, had no use for blaming or labeling. Alvia said that some of her speaking engagements challenged her to speak on behalf of the gay men she had gotten to know. I heard her say more than once, "I was a gay man today."
The third response, denial, is derived from the first two. Up against something truly awful that one fears, and it's an icky disease whose sufferers are shunned and blamed, denial has a certain psychological logic. People adopt the attitude: this doesn't affect me.
You know, Jesus' disciples suffered from serious denial at many points. After the transfiguration, Jesus taught the disciples that he would be killed and rise again. This is in Mark, chapter 9. Verse 32 says, "But they did not understand and were afraid to ask him." Then they turned to arguing about who among them was the greatest. That's so human, isn't it, to displace a life and death matter that we just can't face, with a dispute about something that doesn't matter?
The general public had been only dimly aware of AIDS until 1991, when Magic Johnson (for you young folks, Magic Johnson was a basketball super star on a level with Kobe Bryant today) announced that he was infected with HIV. Our hotline lit up for a whole week, with 40 times the normal volume of calls. This one event was the biggest crack in the wall of denial about AIDS.
But that was 13 years ago, and the denial hasn't ended. Here are some symptoms of denial that I see. I went to the library to check out Randy Shilts's classic book about the earliest years of AIDS, And the Band Played On. The downtown library's copy had been missing since 1995, and the North Wilmington branch's copy was on the shelf, apparently never read or checked out until I showed up. Even today it is easier to move the church to send home care kits to Africa than to deal with AIDS here at home. Looking at the facts printed in the bulletin about AIDS in Delaware, nobody could say that it's not a problem here.
I want to be clear that I think the AIDS home care kits are a great project. We absolutely should be doing this, because the need in Africa is so great and the resources are stretched beyond the breaking point. My point is that denial allows us to see that there's a problem "over there" but not in our own back yard.
Everyone in this room knows someone who is HIV+ or has AIDS. You may not know that you do, because people still are afraid to say that they are infected. They are afraid that you will no longer be their friend, that you will turn away in fear or that you will judge and blame them. Their fear of being stigmatized silences them, and allows us to continue in our denial. What a depressing cycle of silence and ignorance. Lord, deliver us from denial.
You'll be happy to know that this sermon has turned the corner; we're now entering upon the more positive responses to AIDS.
There are two types of positive responses; the first is practical, which takes many forms. Medicine is practical. From the very beginning, doctors, nurses, and even pharmacists contributed to the discovery of the new disease. After many years of struggle, neglect, research, politics, and hard work, good medical care became available for almost all AIDS patients in the US.
Personal Care is practical:
Some friends and family looked past their own fear to take care of their loved ones with AIDS. Six people in Miami, including four in the medical field, a social worker, and a postal worker, started Health Crisis Network to provide care for their friends and people they didn't know yet. They set up an answering machine as their first hotline, because people had a lot of questions. They used donated space in a Lutheran Church and hand-carried wheelchair patients up to the second floor to attend support groups.
This type of organizational response was duplicated all over the country. The first response was to care for people who, in the early years, mostly died. As treatments for various opportunistic infections became available, persons with AIDS lived longer. Buddy programs sprang up, in which volunteers received training to become buddies to a person living with AIDS, providing transportation, companionship, or an occasional fun event. If the person with AIDS had no regular caregiver, buddies often did the dishes, tidied up the house, and performed services that a nurse's aide would do.
Today, with effective drugs available, some people with AIDS are able to work and enjoy a good quality of life, though they still have a chronic illness and not everyone can tolerate the side effects of the drugs.
The AIDS Home-Based Care Kits are a wonderful practical response. They allow us to respond in a meaningful way to a medical and social crisis in Africa that is completely beyond our comprehension. People in Africa do not have access to the drugs that keep Americans with AIDS alive, and it is unclear that these drugs will ever be available. It is good that we do what we can to help our brothers and sisters in Malawi in their response to the catastrophe of AIDS.
Another essential practical response was to work on prevention. Cities with organized gay communities, such as San Francisco and New York, had early and effective prevention programs. In fact, the more hidden and scattered the gay population was, the less effective prevention measures were.
Other communities and subcultures were slower to get going. Alvia hit the AIDS lecture circuit in the early 90s, tirelessly reaching out, primarily to women in the African American community, to bring word of a plague that they needed to know more about.
Even today in Wilmington, the African-American community largely doesn't talk about AIDS, despite the impact it has. An exception is Beautiful Gate Outreach Center at Bethel AME church, which does prevention, HIV testing, and outreach. There is evidence that they are inspiring a couple of other churches. This practical response needs more support behind it.
Some other practical things you can do: Speak out when someone demeans persons with AIDS. Stay informed so that you do not perpetuate responses based on ignorance, fear, or stigma.
Jesus embraced practical responses. He healed several persons with leprosy, and in today's gospel reading he sent word to John the Baptist who had asked "Are you the one who is to come, or are we to wait for another?" And Jesus replied, "Go and tell John what you hear and see: The blind receive their sight, the lame walk, the lepers are cleansed, the deaf hear, the dead are raised, and the poor have good news brought to them."
Now let us turn to a type of response that takes us out of ourselves and brings us closer to God and to our fellow human beings. This is a big category. I think of it as the creative response, but you might call it transcendent.
This morning's passage from Revelation is just a small sample of that amazing book, a creative response to suffering. Despite the Left Behind series, despite the many who have found in the bizarre images of Revelation an explicit prediction of the end times, it is not a prediction in the literal sense. Revelation is a vision revealed to John (not the disciple, a later John) and written around 90 AD. At this time the emperor Domitian was demanding that he be worshipped and addressed as God. Many Christians were put to death for refusing this command. In a time of terrible persecution and seeming hopelessness, John receives this vision of a titanic struggle between God and the enemy. The enemy is depicted as various beasts, and God keeps triumphing over the enemy. Finally, John sees "a new heaven and a new earth." A New Jerusalem. God "will wipe every tear from their eyes. Death will be no more." The message of Revelation for the turn of the first century of the common era was that those who are faithful and continue to confess Christ and worship only God, despite the most horrible suffering, will be welcomed into a pain-free, suffering-free heaven.
Whoa! Are we back to denial? Are we dreaming of pie in the sky by and by and ignoring the reality of suffering? It depends on how we understand the message of Revelation and use it in our lives.
I take Revelation to mean: Stand firm. Practice your faith. Live as one who is redeemed by Christ. Let the chips fall where they may. God is in control.
Prayer is a creative or transcendent response. If you have been thinking, well, fine, but what can I do about AIDS? I'm not so well myself, and my resources are limited. Well, pray. Pray for persons with AIDS. Pray for the young people you know, that they will protect themselves against infection. Pray for those like Beautiful Gate and AIDS Delaware who are actively providing care, support and prevention. Maybe you already know someone who is openly HIV positive or who has AIDS, or maybe you will read about someone. Add that person to your prayer list. Keep that person in your heart.
Alvia responded creatively to the end of her family and of life as she had known it. She prayed without ceasing. She also created paintings to express her deep beliefs and emotions of loss, longing, love, pain, and hope.
Back in the 80s, when the epidemic of AIDS seemed to have no end, when funerals were part of daily life in the gay community, Cleve Jones got an idea to ensure that no individual's name would get lost in the sea of names. He asked persons coming to a street demonstration to bring a hand-lettered sign with the name of someone they knew who had died of AIDS. Participants taped their signs onto the gray concrete walls of the Federal Building in San Francisco. The hundreds of signs took on the appearance of a patchwork quilt. Cleve Jones started a project to spread a massive quilt at the foot of the US Capitol in 1987. 2,000 panels covered two acres of the mall.
Randy Shilts writes, "Each quilt panel was six by three feet, the size of a human grave. Each panel represented individual loss; stitched together and stretching farther and farther, they were for many people a glimmer of how much had been lost to the disease. Few could wander for more than several minutes among the names and not be moved to tears."
Now that was a creative response. The quilt, now administered by the Names Project, allows survivors to memorialize their loved one in an individual way. The quilt panels usually contain images and words that were important to that individual. The process allows friends and family to create this memorial at their own pace, and often promotes mutual support among those working on the quilt panel. I worked with my colleagues at Health Crisis Network on a panel for Scott Tobin, a former communications executive who spent the last three years of his life working vigorously for AIDS prevention.
John Klein from AIDS Delaware, who will give our Minute for Mission, brought a quilt panel with him today so that you could see one after the service.
I am sorry to say that so many people have died that the quilt is now too large to display. At least, they haven't found a way to display the whole quilt since 1996. On that occasion, when it covered the entire mall from the Capitol to the Washington monument, I touched Ricardia's panel. I held Dora Carrera, a Presbyterian elder and colleague on the AIDS Network Leadership Team, while she wept over the panel of her son Larry. I visited Scott Tobin's panel, and the panels of several other persons we have lost. As a co-moderator of the Presbyterian AIDS Network, it was my privilege to participate in a public reading of all the names on the quilt. President and Mrs. Clinton, Vice President and Mrs. Gore, the Moderator of our denomination, and many well-known and unknown people read names for three days.
The quilt has created a sense of healing around AIDS. It has united people of incredibly diverse backgrounds in their loss and grieving. It is a creative response that arose out of immense suffering. It is the kind of response we should all pray for, even in our daily defeats, even in our individual pain and loss. And you know what? A quilt is practical, too. It warms you and tells a story at the same time.
This morning we will end the sermon with a response from the choir. The words, a poem by W. H. Auden, are printed in the bulletin. To me they suggest opening ourselves to God in unexpected and bizarre ways. The words are meant to be strange. Just let the beauty of the words and music carry you to a place of possibility, of creative response.
He is the Way
He is the Way. Follow him through the Land of Unlikeness;
You will see rare beasts, and have unique adventures.
You will come to a great city that has expected your return for years.
He is the Life. Love him in the World of the Flesh;
And at your marriage all its occasions shall dance for joy.
W. H. Auden
