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Contents: About This Issue | Keeping the Love Alive...Together | I Wear a Red Ribbon | How to Make a Panel for the Quilt | Remembering Loved Ones on the World Wide Web | The Least of These Are My Family |
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Focus Paper Index | 1989 | 1990 | 1991 | 1992 | 1993 | 1994 | 1995 | 1996 | 1997 | 1998 | 1999 | 2000 | 2001 | |
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Dear Network Members:
Focus paper #31 was written by Debbi Hood Johnson, a PLWA and AIDS activist, near the end of 1995, with a scheduled release in the middle of 1996. We publish it now in her memory. She was killed in a car accident on February 24, 1996.
Debbi's "I Wear a Red Ribbon," originally published in our Focus Paper #25, has touched thousands of people all around the world. We include a memorial to her in this issue.
Focus paper #30, on African American Church Models for AIDS Ministry, originally scheduled to be released in March, will be mailed in June.
We have taken the unusual step of delaying production of the scheduled Focus Paper #30 on African American HIV/AIDS ministry models and resources in order to publish this special edition of our Focus Paper series as a memorial to the life and ministry of Debbie Hood Johnson.
I, like countless others, knew Debbie through her HIV/AIDS ministry on CAM and through her writings. I never had the privilege of meeting Debbie face to face or even hearing her voice through the telephone. Yet I had the privilege of being a small part of Debbie's journey with HIV/AIDS.
Debbie touched many lives through her association with the Computerized AIDS Ministries Resource Network (CAM) around the world. Her moving story "Why I Wear a Red Ribbon" has been used by people throughout Asia, Africa, Latin America and the United States to move individuals and communities from complacency to compassion, despair to hope, and judgement to reconciliation. Through the mediums of the electronic bulletin board and the World Wide Web Debbie's life influenced individuals brought together by a common concern for ministry with persons living with HIV disease.
In Debbie's death, we have experienced anew the significance of following in the Weslyan tradition that calls us to "do all the good one can, in all the ways one can, at all the times one can, by all the means one can, as long as one can." Debbie's life and ministry has provided us with a brilliant example of how modern technology can be used to nurture new communities of faith. Communities which embody for me the truthes of the Christian faith; grace, love, compassion, responsibility, hope and reconciliation.
Our most honest tribute to Debbie Hood Johnson will be how we respond to those around us whose lives are forever challenged and changed by HIV/AIDS. My prayer for all of us is that we will live up to Debbie's example.
Grace & Peace,
Rev. Charles Carnahan
Executive for HIV/AIDS Ministries
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by Debbi Hood Johnson
Note: Factual information and how to make quilt panels has been adapted from information published by the NAMES Project.
Modest Beginnings
Early in 1987, a small band of friends gathered together in a San Francisco storefront to document lives that they feared history would neglect. The leader of that group, Cleve Jones, impulsively spray-painted the name of a dear friend who had died with AIDS on a simple piece of cloth, the size of an adult grave. He felt compelled to keep his friend's name alive on this vivid piece of fabric.
Cleve's actions marked the modest beginning of The NAMES Project Memorial Quilt. His feelings of grief, pride in the courage of his friends who were dying with AIDS, and determination to hold people's attention moved the small group of men into action. They decided to create a memorial for those who had died with AIDS and, through this memorial, to help people understand the devastating impact of the disease, which some have called a new holocaust.
Small steps by a few men initiated a global movement. As awareness of the Quilt and its impact increased, so did participation. Thousands of people from all over the United States and the world sent their loved ones' homemade panels to San Francisco. Now the NAMES Project AIDS Memorial Quilt is the most visible symbol of the AIDS pandemic.
The Quilt Today
The mission of the NAMES Project is "to use the AIDS Memorial Quilt to help bring an end to the AIDS epidemic." Its goals are to provide a creative means for remembrance and healing, to illustrate the enormity of the AIDS epidemic, to increase public awareness of AIDS, to assist with HIV prevention education, and to raise funds for community-based AIDS service organizations.
The Quilt has also helped to move more people of faith into action. Cathie Lyons, former associate general secretary of Health and Welfare Ministries has written:
"To be in the presence of the Quilt, to experience its message and emotions is to be in the presence of the Holy: to be upheld and sustained by the knowledge that God's mercy has no end, that God's love endures, that God has received those who have died, and that the wounds of the living will be healed."
As of October 1995, over 31,000 individual panels had been submitted for inclusion in the Quilt. Each panel measures 3 feet by 6 feet, symbolizing the size of an adult grave. If those 31,000 panels were spread out, side by side, they would cover 12 football fields without walkways, 18 football fields with walkways.
The AIDS Memorial Quilt is a fairly accurate mirror of the pandemic, even though the vast number of panels represent only a very small percentage of those who have died with AIDS. Panels are variously sewn by mothers and fathers, sons and daughters, brothers and sisters, lovers, spouses, close friends, support group members, Sunday School classes, synagogues, neighbors, hospice workers, and even strangers who want to honor the memory of someone who has succumbed to the ravages of AIDS.
Participation in the Quilt is world-wide. As of October 1995, 39 countries in addition to the United States have contributed panels, including Argentina, Australia, Belgium, Brazil, Canada, Chile, Cuba, Denmark, Dominican Republic, France, Germany, Guatemala, Hong Kong, Ireland, Israel, Italy, Japan, Mexico, The Netherlands, New Zealand, North Ireland, Norway, Poland, Romania, Russia, Rwanda, Senegal, South Africa, Spain, Suriname, Sweden, Switzerland, Thailand, Trinidad and Tobago, Uganda, United Kingdom, and Zambia.
Just as the many countries represented in the Quilt offer a worldwide kaleidoscope of love and compassion, so do the fabrics and materials used to honor individual memories. One can get a real sense of the person's personality and life just by taking notice of the amazing range of items sewn into the panels, such as personal photos and drawings, religious symbols, dolls, Mardi Gras masks, feather boas, cowboy boots, cremation ashes, tennis shoes, taffeta, silk flowers, wedding rings, baby rings, scripture quotations and other inspirational writings, love letters, car keys, credit cards, blue jeans, motorcycle jackets, dresses, baby gowns, and stuffed animals. The creativity shown in the panels represents hours and hours of planning, drawing, cutting, sewing, laughing, crying, grieving and remembering.
The entire AIDS Memorial Quilt was shown most recently in October of 1992 in Washington, DC at the foot of the Washington Monument. More than 22,000 panels were displayed that weekend, with over 2,000 new panels presented for dedication and inclusion. The Quilt had been shown two previous times in Washington, DC... On each occasion, the planners of the display thought "never again" would the quilt be shown in its entirety because of its massive size.
Nevertheless, the Quilt will be seen "one last time" in Washington, DC in October of 1996. This October, the Quilt will span the entire length of the Mall, from the Capitol Building all the way down to the Lincoln Memorial.
Personalizing the Quilt
I can't write this article about The NAMES Project AIDS Memorial Quilt without personalizing it. My husband BJ died with AIDS in May of 1993. I am now living with AIDS myself. BJ And I were volunteers for The NAMES Project for the Quilt's first partial display in our home city of Charlotte, North Carolina in 1990. As local AIDS educators, we knew many of the individuals whose lives were represented on the panels. We were monitors for the display, to insure that no disruptions were made and that no one tried to deface the Quilt. We also served as grief counselors even as we experienced our own grief. We not only recognized some of the names on the panels, but also grieved to watch our friends and clients walk or be wheeled around the Quilt, knowing that soon their names would be sewn onto fabric.
The second time the local chapter of The NAMES Project brought a Quilt display to Charlotte, we were even more involved. We participated in the breathtaking opening and closing ceremonies, unfolding and folding quilt sections. Reverently we took turns at the podium reading names of the individuals represented in the display. We offered our shoulders as folks cried in front of panels. We explained how to prevent the transmission of HIV to young people, who came on busloads to view the unique memorial.
Because our city did not have a history of being supportive of AIDS issues, sponsors decided to have added security of volunteers sleeping at the Quilt site overnight. My husband BJ and I shared a night with the Quilt. I cannot fully describe what it was like to be in the vast, silent auditorium with these mystical, spiritual pieces of cloth. That night we wandered slowly through the room, silently absorbing the love and pain reflected in each panel. We could almost hear the voices of those whose lives had been reduced to laminated photographs, handwritten letters, special teddy bears, pockets of ashes, and birth and death dates. The enormity of AIDS' impact---not only on those infected with HIV/AIDS but also those affected with HIV/AIDS---washed over us.
We camped on the cold concrete floor beside the traditional "signature panel", where people write messages to loved ones or simply sign their names as witnesses to the experience. We took our red ribbons off of our shirts and entwined them on the panel, securing them with clear permanent tape. BJ held my hand as he wrote this message in black magic marker beside our merged red ribbons:
"Sleeping with the Quilt brought an intimacy few have been privileged to experience. In doing so, we carry the names of those lost to HIV/AIDS and celebrate those who are living with HIV/AIDS. We renew our commitment to each other and the fight against ignorance. We're still keeping the love alive...together. We remember their names! June 20, 1992. BJ and Deb"
Several months later, BJ and I packed our car and drove to Washington, DC to be a part of the "final"" display of the entire Quilt. Again, we acted as unfolders, readers, and grief counselors. As we read the names together in front of that awesome lawn of colors, we heard our trembling voices echo off of the Washington Monument. We experienced such a feeling of community with so many unfamiliar faces. I was heartbroken to watch my husband walk down the black plastic walkways between the sections of panels. I knew this would be the last Quilt display we would share together in person. Seven months later, BJ was dead from AIDS.
Making BJ's Quilt Panel
I could not plan a panel for BJ until almost a year after he had died. I started by doodling and jotting down ideas as they came in my head. How could I compress his life and impact onto a 3'x6' piece of material? How could I design something that would be inclusive of all the family and friends who wanted to share in this memorialization? Finally, after many crumpled pieces of paper, I came upon just the right idea. I sent a draft drawing and letter with instructions and a deadline to this special group of folks, explaining how they could contribute to BJ's panel. Months and months of sketching, sewing and painting, gave birth to Beej's panel.
BJ's mother, sister and nephew accompanied me in the Quilt Dedication ceremony. As I passed the heavy folded material into the hands of The NAMES Project representative, a real peace came over me. I watched Quilt volunteers unfold BJ's panel and raise it up for everyone to see. On a Carolina blue background sat a teddy bear in a tuxedo, holding ten colorful balloons. Each balloon had been created by one of BJ's loved ones:
I have not seen my husband's panel since it was sewn into a 12'x12' section of the Quilt [ed. note: Debbi did get to see his panel one more time before her death.); our local chapter hopes to have it shipped here for World AIDS Day, December 1. BJ would have been proud to have become a part of the AIDS Memorial Quilt, because he knew what an educational tool it has become. My heartfelt wish is that people all over the world, especially young people, will look at his panel and see how much this particular individual with AIDS was loved and cherished and understand how tragic it was for his life span to have been so short.
Although I dearly miss my husband, BJ, every day of my life, I am so glad he is represented in the AIDS Memorial Quilt. I plan to go back to Washington, DC next October for the next "final" display of the Quilt in its entirety. I'm sure that I will have mixed emotions as I stand in front of his panel or read his name from the podium. As precious as this roving museum is, I pray for the day there will be no more panels to be added to it. I pray for the day the sewing machines stop whirring. I also pray that someone will want to remember my name and make a panel for me....
See also: Debbi Hood Johnson Memorial Pages
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The main qualifications for doing a Quilt panel are love of the person who has died and a desire to remember that person in a concrete way that will help witness to the world who that person was. You do not have to be a professional artist or a sewing expert to create a moving personal tribute. It doesn't matter if you use paint or fine needle work; any technique which will endure the folding and unfolding of quilt panels is appropriate. Although you may choose to create a panel privately as a personal memorial to someone you have loved, the NAMES Project encourages you to follow the traditions of the old-fashioned quilting bees and to include friends, family, and co-workers .
When you create a panel, draw upon your imagination and your memory of your loved one. Include the name of the friend or loved one being memorialized and additional information such as the dates of his or her birth and death and a hometown. The NAMES Project asks that each panel be limited to one individual (although one individual may have more than one panel).
Durability of materials used for the panel is crucial. A medium-weight, non-stretch fabric (such as cotton or poplin) works best. Your design can be vertical or horizontal, but the finished, hemmed panel must be exactly 3 feet by 6 feet (90cm X180cm). When the fabric is cut, be sure to leave an extra 2 or 3 inches all around the hem. If you can't hem the panel yourself, send it to The NAMES Project (finished except for the hemming). Volunteers at their headquarters will hem it for you. Batting for the panels is not necessary but please use backing. Backing helps keep panels clean when they are laid out of the ground and helps retain the shape of the fabric.)
As you construct your panel, the NAMES Project suggests that consider using some of the following techniques:
Once you complete your panel, please take the time to write a one or two page letter about the person you've memorialized. The letter might explain the symbolism of parts of the panel, your relationship to him or her, how he or she would like to be remembered, a favorite memory, or all of the above! If you can, send a photograph of the persons with the letter for The NAMES Project's archives.
Quilt Displays
If you want to bring a portion of The NAMES Project AIDS Memorial Quilt to your city for a display, you can contact the Quilt Headquarters for the name and information about the local chapter closest to you. Congregations may also ask for information about the interfaith Quilt Project.
The NAMES Project's Visitors' Center and Panelmaking Workshop can be reached in San Francisco at (415) 863-1966. Their main office is at 310 Townsend Street, Suite 310, San Francisco, CA 94107 (phone: 415-882-5500, fax: (415) 882-6200).
Websites
1. The NAMES Project is also on the World Wide Web at http://www.aidsquilt.org. The website has information about how to make quilt panels, the display in Washington, DC in October, pictures of some of the panels, AIDS educational information and more.
2. Health and Welfare Ministries posts memorials to persons who have died of HIV/AIDS-related causes free of charge on our Computerized AIDS Ministries (CAM) website at http://gbgm-umc.org/CAM/memorials/. At this time, we also do free HTML markup posting, although volume may prevent us from continuing this practice at an undetermined time in the future. We reserve the right not to post a memorial if it seems inappropriate for this sacred space, but do not expect that we will have to invoke that right. Click here for current information.
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The red ribbon and globe is a symbol of UNAIDS's Global AIDS Program, http://www.unaids.org.
HIV/AIDS Ministries Network Focus Papers are a publication of the Health and Welfare Ministries , General Board of Global Ministries, The United Methodist Church, Room 330, 475 Riverside Drive, New York, NY 10115. Phone: 212-870-3909. FAX: 212-749-2641. E-MAIL: aidsmin@gbgm-umc.org. Focus Papers, unless otherwise noted, may be quoted, reproduced and distributed with credit being given to Health and Welfare Ministries and the authors. These focus papers were written several years ago there some information is outdated.
The HIV/AIDS Ministries Network is a network of United Methodists and others who care about the global HIV/AIDS pandemic and those whose lives have been touched.
