The 1997 NCAN conference, at Loyola Univ. in Chicago, attracted 350 persons active various AIDS ministries. They heard a variety of presentations about improving religious and medical help for minority and women HIV/AIDS patients, and about the founding of the AIDS Quilt.
I’m not Cured, but I’m Healed,” Patry Bentz told participants at the 10th anniversary conference of the National Catholic AIDS Network in Chicago. A middle-aged Minnesota woman who contracted AIDS from her now-deceased husband, Ms. Bentz meant that, though not cured of the disease, she felt healed in spirit by the support she has received from the church, and especially by the companionship of participants gathered for the six-day event at Loyola University Chicago. “Companions on the Journey,” in fact, was the title of this year’s gathering that ran from July 17 to July 22.
The conference brought together 350 men and women from around the country, both religious and lay. Virtually all — including persons like Ms. Bentz who are living with the disease — are engaged in various kinds of AIDS-related ministries. As the word “companions” also suggests, the themes of the plenary sessions and the workshops had much to do with community. Because of the stigma connected with AIDS, however, the lack of a strong sense of community nationwide has meant that efforts to address the pandemic in a unified and mutually supportive way have been slowed.
In the first plenary session, for example, Mindy Fullilove, M.D., associate professor of clinical psychology and public health at the New York State Psychiatric Institute and Columbia University, spoke of homophobia as one of the destructive forms of this stigma. Referring to a study of attitudes among black youths in San Francisco, she spoke of the youths’ view that African Americans who had contracted the disease through intravenous drug use were worthy of compassion and respect, but not those infected by homosexual activity. It was difficult for them, she said, even to imagine a black man as gay, because they believed that AIDS was a disease of gay white men. Dr. Fullilove, who is herself African-American, described attitudes of this sort as reflective of what she termed a consciousness of separateness; it must be replaced, she urged, by an acknowledgment of the interdependence of all communities.
The absence of wholeness in the wider community and the separateness that goes with it, is also evident in the unequal access to newly developed drugs called protease inhibitors. Taken in combinations, referred to as a cocktail, they have made it possible for many people with the virus not only to live longer lives, but also to live more active lives. The drugs are very expensive, though, and consequently availability tends to be limited to the well insured or wealthy. Jon Fuller, a Jesuit priest and physician who is assistant director of the Clinical AIDS program at Boston City College, observed that, in consequence, the virus is making increasingly deadly inroads among poor people of color — the very people with least access to the new medications. As for developing nations, he added, where just providing clean water is often a major problem, protease inhibitors are out of the question.
Moreover, although the death rate among males in the United States has begun to decline because of the protease inhibitors and more emphasis on prevention, there is a shadow side to this good news — namely, the emergence of an overly optimistic outlook. Dr. Fuller spoke critically of newspaper headlines like “When the Plague Ends” as premature and misleading. Once the public thinks that the epidemic is over, he said, it will be difficult to regain a strong interest in pursuing an end to the disease. The negative implications for fund-raising are already being felt; donations have fallen off, and there have been cuts in government funding.
Dr. Fuller also Warned that because the new drugs can in certain cases reduce the virus to undetectable levels, some who are infected may mistakenly assume that it is permanently gone and abandon needed precautions. Contributing to this misperception are magazine advertisements for the protease inhibitors. He showed slides of several that have appeared in Arts and Understanding. Healthy looking young men (all of them white) are shown engaged in physical activities as strenuous as rock climbing. Such images subtly suggest that the virus is less threatening than it really is. Even the term “cocktail,” he said, has a falsely glamorous edge to it.
Toward the end of his presentation, Dr. Fuller stressed that because there is no cure for AIDS, the first priority must still be prevention. In this regard, he voiced concern that the Catholic Church has been reluctant to engage in dialogue about the role that needle exchange and condom education programs have played in reducing the rate of infection in some parts of the world. He suggested that dialogue along these lines could be productive, and that this might best be approached through the efforts of theologians — a proposal endorsed in several of the regional meetings that took place before the end of the conference.
If insufficient attention is given to the needs of low income people of color in general who are H.I.V.-positive, so is there neglect regarding women. Most of the AIDS-related research has focused on males; and yet, while the rate of infection among men has started to drop, for women it is rising. AIDS in the United States is now the third leading cause of death among women between the ages of 25 and 44. They have consequently been among those most harmfully affected by the consciousness of separateness.
By way of underscoring this lack of attention, the conference included several presentations by women who discussed some of the steps now being taken to address the imbalance. Since many H.I.V.-positive women are mothers, one of the issues facing them concerns the need to make arrangements for the care of their children before they are incapacitated by their illness. This was the theme of a workshop entitled “Mothers with H.I.V., the Journey,” conducted by Patty Bentz and another woman from Minnesota, Mary Gherer. The focus of their workshop was a video of the same title that they have produced in conjunction with a group of H.I.V.-positive mothers. The video describes the way in which-working with case managers and attorneys — the mothers are offered an opportunity to ensure that the eventual caregivers of their children will be the ones they themselves have chosen.
Another example of emerging efforts to assist mothers with H.I.V./AIDS began two years ago in Portland, Ore. Realizing that there were no services there, the Rev. Bruce Cweikowski, who is in charge of AIDS ministries for the Archdiocese of Portland, collaborated with Sharon Kirk, a member of the Sisters of St. Mary of Oregon, and other religious women. Together they have developed a ministry called Women’s Intercommunity AIDS Resource. Sponsored jointly by a dozen congregations, W.I.A.R. provides direct services for H.I.V.-positive women and also for their children — increasing numbers of whom are also testing positive throughout the country. It is a difficult ministry on more than the health level, because women who test positive not only struggle with the disease itself, but also with the psychological scars from their backgrounds of isolation, poverty and abuse. As to abuse, the director of W.I.A.R., Sia Lindstrom, noted that H.I.V. and abuse, both sexual and physical, tend to go hand in hand.
Besides the Practical Help provided by groups such as W.I.A.R. and videos like “Mothers With H.I.V., the Journey,” efforts of this kind perform an additional service — namely, raising consciousness about the suffering and the humanity of persons with AIDS, men and women alike. Few individuals have had a greater impact in raising consciousness on the national level than Cleve Jones, another of the main speakers. It was he who began the Names Project and the AIDS quilt. In his address, he described how the idea of the quilt originated from his attachment to a quilt his great-great-grandmother had made for him decades before. The concept began to crystalize after a 1985 commemoration of the murder of Harvey Milk, the gay activist San Francisco supervisor who had been murdered seven years before. The commemoration included placards with the names of people who had by that time died of AIDS in San Francisco. The idea continued to crystalize, and two years later quilt pieces with the names of deceased loved ones made by the friends and family were assembled and displayed for the first time on the grounds of the Washington Monument in Washington, D.C.
The quilt struck a deep chord. As Mr. Jones observed, for ordinary men and women it quickly became not only a form of personal commemoration, but also a powerful symbol of caring for others and an unspoken plea that there be no rejection of persons with AIDS. In the first year, residents of 10 cities had an opportunity to see it, and of 16 in the following year. Now grown to an enormous size, it was last displayed in its entirety on the Monument grounds in the fall of 1996. Since its beginnings, 45 local Names chapters have been organized in different parts of the country; several panels lent by the Chicago chapter were on view at the conference.
But the quilt has become well known abroad as well, and one of the many moving moments of the conference occurred when Mr. Jones spoke of the first panel that had been sent to him from Africa, by a woman there whose husband died of AIDS 10 years ago. Unbeknownst to him at the beginning of his talk, the woman was present in the audience, Noerine Kaleba of Uganda. Ms. Kaleba, who is now the Community Mobilization Advisor at UNAIDS in Geneva, Switzerland, rose to identify herself at the end of the presentation. At a later gathering she described her own story of what it means to be, as she put it living with AIDS in the family. Not only has she herself been widowed by the disease; her sister has been infected with the virus, As has the sister’s two-year-old son.
The conference’s overall theme of community as the needed antidote to the consciousness of separateness was the focus of the main liturgy, celebrated by N.C.A.N.’s episcopal moderator, Bishop Howard Hubbard of Albany, N.Y. The homilist was Msgr. Ray East, the African-American pastor of St. Teresa of Avila Church in Washington, D.C. Alluding to the second chapter of Paul’s Letter to the Ephesians, in which Paul speaks of breaking down the dividing walls of hostility, Monsignor East said that the Scriptures as a whole should “forge us into solidarity with the poorest sister or brother in the world with AIDS.” This was the clearly perceived goal of the co-workers and companions on the journey who attended the conference.