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"Those on the Margins"
Major Herbert C. Rader, MD, FACS, Medical Advisor, The Salvation Army
Tuesday, November 10, 1998, 2:15 p.m., Hyatt Regency Hotel, Atlanta Georgia
AIDS is everyone's problem
AIDS is like a lens bringing critical issues into focus, including the inscrutable complexities of human sexuality, motivation and behavior, the shameful economic disparities and xenophobic prejudices that exist in society, and the obligations of those with resources to share equitably and even sacrificially with those who are in great need.
AIDS is decimating many African nations, and ravaging the capital cities of Southeast Asia, devastating the infrastructure and destroying the gains of development programs. AIDS is also rampaging through our inner cities, straining the health systems of the West. In the midst of this suffering and loss, we are being called not only to awareness, sympathy and token responses, but also to serious consideration of our obligations as the people of God.
Focusing on AIDS
For more than a decade The Salvation Army has been responding to the challenge of AIDS. Our hospitals in India, Africa and Indonesia that have always focused on the health care needs of the poor have been encouraged to develop strategies to serve the complex needs of those affected by HIV/AIDS. The Army's Booth Memorial Medical Center, now part of the New York Presbyterian Healthcare Network, was the first AIDS-designated center in Queens.
In its preaching, policies and programs, the Army has attempted to promote and demonstrate unconditional caring for those affected by HIV/AIDS, - including the invisible, voiceless, forgotten people on the margins. Its community counseling program in Zambia has attracted international attention. Its international program facilitation team has presented its work at each of the International AIDS conferences. The Army's first international AIDS consultation was convened in San Francisco in connection with the International AIDS Conference in 1988.
Great commission - Great commandment
For 130 years we have attempted to bring social action and proclamation of the gospel together in integrated ministry, to fulfill both the great commission and the great commandment in practical and balanced ways. While government and the scientific community have focused largely on understanding transmission, prevention and therapy in the context of particular social groups, we have also tried to maintain an international perspective, and a concern for those individuals who may be missed by these programs.
People on the margins - the plight of the poor
People are not always marginalized because they have AIDS; some have AIDS because they are marginalized. In many parts of the world, desperate adults, often women and runaway children have been trapped in lifestyles and behaviors that have placed them in harm's way.
John Foley, director of Salvation Army social services in Hartford, has studied the problems of male and female prostitutes. His findings: 82 % of prostitutes were raped before age 16; all were raped at some time in their lives, 49 % by a family member. 62 % were battered as children, all were battered at some time; 93 % were runaways before becoming prostitutes.
Of 1. 2 million runaways nationwide, 35 % leave home because of incest, and 53 % because of physical abuse. As many as 1.6 n-million children may be working the streets across the country. (Hartford Courant, Psychology Today)
John Foley has developed counseling and support programs for women who will not leave the lifestyle, and a five-year structured program for those attempting to enter mainstream society. For both groups, AIDS education, often using peer counselors, is provided, and for those with HIV/AIDS, emotional and material support, child care and placement and spiritual counseling in a context of loving acceptance is provided.
We have been working with abused and exploited women, and women and children at risk, since 1886. Finding alternatives has been the challenge. It is a long journey for the woman who has experienced nothing but abuse and exploitation, but the Army has learned to establish a new environment of loving acceptance and coordinated care for those who will accept it.
Not hard to find, but hard to reach
Socially marginalized individuals are everywhere, sometimes in visible clusters: the urban poor, the illiterate street kids sinking in the quicksand of drugs, male and female sex workers; but often in close proximity to affluent neighbors: the alienated, lonely, abandoned, forgotten, victims of domestic violence, neglected babies and abused runaways.
Young, poor women are being infected with HIV at a higher rate than male counterparts, according to the CDC (August 27, 1998). The rates are also higher among minority groups and the poor. "We are continuing to see that the face of the epidemic is changing to populations that are more economically disadvantaged and difficult to reach populations." (George Lamp, director of the AIDS research program for the University of California)
A unique opportunity and obligation. A crisis for the church.
Such people are all around us, and are generally closer to, and more likely to be reached by, a church than a medical facility. Many voices are informing us all that this is not a medical problem that can be solved with medical discovery and intervention, but a complex social issue that will require community participation at many levels, and particularly the involvement of congregations.
While the church may not have the resources of government, we are already deeply rooted in areas of greatest need, we have a tradition and mandate to care for the neglected and outcaste, we are discovering that we have the expertise, facilities, access and rapport, credibility to facilitate behavior change, and we have messages of hope both for those who are making critical lifestyle choices and for those who are dying of AIDS.
Who will benefit from medical advances?
In any event, will medical advances actually benefit the masses of people in the world? Although advances in therapy have slowed the death rate in the U.S., 16,000 new HIV infections occurred every day in 1997 (5.8 million new infections and 2.3 million deaths). 90% of the new infections are occurring in developing countries. 30.6 million people are currently living with HIV/AIDS: 860,000 in North America, 20.8 million in Africa, 6 million in Southeast Asia and India. (UNAIDS)
And the children: 1. 1 million under age 15 were living with HIV/AIDS at the end of 1997, and 8.2 million were orphaned by AIDS through 1997. While the number of deaths is declining in some areas, the number of new cases continues to rise. AIDS has risen to the number four spot in the list of causes of deaths, ahead of Malaria and just behind Tuberculosis. (UNAIDS)
The inadequacy of 'scientific' solutions
In a world where children die of malnutrition, infant diarrhea and measles, and adults still succumb to malaria and tuberculosis, expensive drugs will not stop an epidemic among individuals who are infected because poverty forced them to put themselves at risk.
The Joint UN Programme on HIV/AIDS (UNAIDS) is working toward greater access, but we know that drugs, and vaccines when they are eventually developed, will never reach the millions in Africa, India and Asia that can not even afford condoms.
Triple combination therapy for the infected population would cost 150 %, 244 % and 264 % of the gross national product respectively for Suriname, Honduras and Guyana (Montaner, J.S.G., et al, JAMA, April 22/29, 1998, vol. 279, No 16, page 1264)
No cause for complacency
The 12' World AIDS Conference reports corrected the euphoria resulting from declining death rates in patients on highly active retroviral therapy, including protease inhibitors. "The virus remains, and ultimately it wins. " (Stephenson, J., JAMA, August 19, 1998, vol. 280, No 7, pages 587-590). Associated epidemics, like tuberculosis, hepatitis B, syphilis, gonorrhea, herpes, etc., have created their own problems. If churches do not enter the fray to catalyze change and to bring hope, many more will be lost.
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The Army has learned to be both a lighthouse and a lifeboat organization. We can not change the "manufacturer's instructions," with respect to the immutable rules for healthy living, nor can we move the lighthouse to accommodate someone's desire to sail near the rocks. But we understand that our role is not to shout from the shore, but to push out into the dangerous waters, to come alongside with help, and to rescue those who are foundering by all available means.
Commissioner Joe Noland, who is responsible for Army operations for the northeastern states of the U.S., said recently: "I want every human being to be treated with equality ... with respect ... with compassion. I don't want any human being to be marginalized. "
Experiences to share - transferable concepts
Captain Todd Bassett reports that the Army in Cincinnati organized a camp experience for a variety of family units, including children, during the summer of 1998. At least one person in each family had HIV/AIDS, but no one knew which ones. A staff of 30 provided a full camping experience for these individuals who were referred by professional AIDS service organizations. It was a religious event, but all worship was voluntary. All camp facilities, including the pool, were available.
Brenda Beavers, the Army's social service secretary for New Jersey, has developed a respite camp for grandparents as an opportunity for inter-generational camping, bringing children and their sometimes elderly care givers together in a beautiful setting. During the year this experience provides a point of entry into communities to reach others before they become infected.
The Army in Schenectady has street outreach vans designed to locate runaways, vulnerable and exploited young people, and to offer alternatives. The strategy in Albany, Syracuse, Rochester and Buffalo is to get close to those on the margins of society and to establish rapport and relationships of trust, with a view to broadening horizons and motivating behavior change.
In Binghamton, the Army is providing day care and shelters for IV drug users migrating from the tough streets of New York City. Runaways are getting younger and younger. Jamestown and Elmira have domestic violence shelters for women fleeing abusive relationships. HIV testing is always recommended. AIDS services are provided as required.
Adapting facilities - re-channeling resources
In general, we have integrated HIV/AIDS programs into existing ministries. An example is the Adult Rehabilitation Program, a residential long-term program for substance abusers with accommodation for approximately 11,000 young men and women in centers across the United States. The Calgary AIDS hospice is an important response, and represents an adaptation of an existing facility to accommodate a new social need. The home-based hospice program in Lancaster, PA, is another model that was developed in consultation with the community.
In many locations we have the advantage of a special relationship developed through a long history of involvement in a particular community. Nevertheless, senior social service consultants in North America now confess to a 'provider mentality,' and failure sometimes to learn how to tap and use the wisdom of those we serve. There is often fragmentation of the social services provided by professionals from the caring ministries of the congregation.
Finding "entry points"
The September issue of the Journal of AIDS and Human Retro virology reported that traditional HIV-prevention programs are not enough to prevent the spread of the virus among the poor. "We've got to be creative in getting to them," said Linda Valleroy, a CDC epidemiologist and author of the study.
We need to find entry points into communities, and caring for a patient with AIDS often provides such a point of contact. We need to be present in the community, helping them to identify their own leadership and to mobilize their own resources and to develop their own solutions.
HIV/AIDS has created an unprecedented impetus for collaboration among disparate organizations, and unparalleled opportunities for entry into communities. But participation in the life of communities requires new ways of working, including team building, program to program sharing of experience, and facilitation of local initiatives to foster sustained behavior change.
We maintain that prevention messages, including personal responsibility and accountability within community, investment in the future and abstinence from sex and drugs, in the context of life skills education, and supported by mentoring and assistance to reach life goals, can make a positive contribution to the well being of our young people. The challenge remains to build relationships of trust that will provide opportunities for influencing behavior change.
Working alongside to build capacity
Obviously, from a global perspective, the medical approach will not work, and solutions for prevention, care, for owning the problem and for owning the future, must come from within communities.
The Army's approach of community counseling, facilitating community participation, working alongside people to build capacity and to encourage change of attitude and behavior, and to conceive and implement actions, began in Zambia, but the concepts are transferable to other parts of the world, and even to the west.
Based on our experience with AIDS ministries in 100 countries, we offer to this convocation and to the Body of Christ the affirmation and the challenge that the Father of the orphan and widow, of the poor and the powerless, is present and at work everywhere.
We have learned that the courageous, resilient and resourceful peoples on the margins, who have been left out, or put out, do not need our money as much as our love; they do not need our imposed solutions to their problems, as much as our assistance to discover their own answers.
It is often thought that the urgency of the problem precludes reflection and the slow processes of building relationships and capacity within communities affected by AIDS. In fact, we are discovering that the opposite is true. Only through a team approach to community counseling and gradually building a capacity to hope, to believe that change is possible, to own a future, to develop a joint approach to problem solving, can sustained change occur.
We are on a new path that attempts to bring people together to find the solutions that arise out of being together, of belonging, of working together toward common goals. We are stepping away from the path of seeing individuals in isolation, of applying "solutions" to "problems." A fortunate irony is that HIV/AIDS, the crisis that can destroy relationships and bring shame and despair, has been a remarkable entry point and impetus to new approaches that are building relationships, promoting reconciliation and kindling hope.
Focus on the assets
In the past most of us have tended to look at the 'emptiness' in the glass, to conduct a 'needs analysis,' and to design an intervention, including an infusion of resources and expertise from the outside to solve a 'problem.' We are learning to look at the 'assets' in every community, and to come alongside those in community through facilities and programs already in place, and through entry points created by the pandemic.
A breakthrough in our approach has been the development of program facilitation and community counseling teams that come alongside those living in the context of H11V/A1DS to facilitate locally relevant and sustainable approaches to change.
The new approach focuses on strengths (like the extended family in Africa), rather than weaknesses, and strives to build additional capacity for change (like the modification of "ritual cleansing"), care and hope. This approach in the developing world is consistent with the important work of McKnight, Kretzmann and Benson in the United States.
Finding Resources Within Communities
A team of Salvationists, has used this way of working in the context of HIV/AIDS to establish programs in forty very needy parts of the world, where the prevalence of HIV is high and growing, and medical resources are scarce. People are discovering that they themselves are the most important resources, that they have capacity to learn, to change their attitudes, their behaviors and their situation.
Inclusion and participation are words that have special meaning to our programme facilitation team as they gather government and community leaders of all backgrounds to discuss common problems and to inventory and mobilize local resources. Solutions arise from the wisdom and strengths of the people, and are not imposed as social policies or public health strategies.
New Ways of Working
This approach takes us to the street in Buenos Aires, in Hartford, in Bombay. Runaway and throwaway children must have an alternative to begging, stealing and selling themselves, and commercial sex workers must have an alternative to their debasing strategy for survival. Working with these groups requires an entry point that may be a person with AIDS, for whom home visits and care are taking place.
In Bangladesh we learned that barriers to developing community capacity include self-importance, unwillingness to listen or learn and a paternalistic task orientation. Effectiveness in their setting requires developing relationships, good communication, caring for a total person, helping people to solve their own problems. Working alongside people requires that we respect and value them. As one team member observed, "teachers" must become "facilitators."
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Program facilitation teams
In Bangladesh, the Army's strategy of Integrated AIDS Management has attracted wide attention, and program leaders have been invited to participate in the National AIDS committee as a resource organization, the first field-based NGO to receive such an invitation. During meetings with community leaders the official approach has changed from punishment of commercial sex workers to promoting behavior change among their customers, including the leaders' own children.
Over the past ten years programme facilitation teams have worked in Bangladesh, Rio de Janeiro in Brazil, Ghana, Haiti, Mizoram, Calcutta, Bombay and elsewhere in India, The Marshall Islands, Pakistan, Papua New Guinea, the Philippines, Soweto and Capetown in South Africa, Sri Lanka, Uganda, Zaire and Tshelenyemba in Zimbabwe and elsewhere.
In Bangladesh, commercial sex workers in two brothel projects are changing attitudes and behaviors, and team members are also changing as they learn along with those who are struggling with the questions of whether change is necessary and possible, and whether alternatives can be developed, and whether the result will be worth the effort.
In St. Petersburg, a team is winning the trust of HIV-infected drug users to provide services to them and their families. At the same time, young people are being trained to reach school children and college students at special summer camps.
In Fond-du-Negres, Haiti, more than 3,000 orphans have been registered by the Salvation Army, but caring for them has opened doors into the community allowing teams to make home visits to promote awareness of the means of HIV transmission and to encourage behavior change. At Ethembeni "Place of Hope" in South Africa, infants and children are gathered up and cared for.
The hardest thing to accept from inter-regional consultations was the notion that the developing world is comparable to the west or has anything to teach us. In fact, it has turned out that we have had to learn from India and Africa many of the concepts and approaches that are necessary to bring about sustained behavior change in any setting.
Program to program exchange has been a key 'way of working.' It is of interest that when the Army began to plan for a residential hospice for individuals dying of AIDS in Lancaster County, a team led by Ian Campbell and made up of persons with experience in the developing world, met with the community to discuss needs and solutions. The result was a home-based program which looks more like a Zambian approach than a typical North American one.
Lessons from a street program in Canada include: "inclusiveness is a requirement; diversity is a resource and not an impediment." Work within a community must be inclusive and involve genuine participation that empowers the people to define their own reality, and assume their own responsibility.
A belief in the capacity to change
The slums, ghettoes and barrios of the world, the boys of Buenos Aires, the street walkers of European cities and the women of Africa, infected by wandering husbands, have all been areas of special focus. Prevention education is provided and trusted counselors begin to instill a belief in the capacity to change and create a more hopeful future. As capacity grows, ideas about alternate revenue generating activities emerge and are implemented. Plans which arise from within the community foster the development of leadership and are sustainable.
Care is a Transferable concept
Ways of working developed by these field teams have been shared program to program with the result that mutual learning has occurred, and many concepts have been found to be transferable from South to North and East to West. The team has discovered that certain core concepts are transferable, even if specific local programs are not. Among them are "care" understood as journeying together rather than providing or administering care.
"Community" means belonging in healthy relationships rather than arbitrary or accidental geographic or organizational grouping. "Change" relates to the transformation that comes from within rather than change dictated and directed from outside.
We are beginning to see in the pattern of the Word who became flesh to dwell among us, and the Holy Spirit, the paraclete who comes alongside to enlighten, encourage and empower, the model for our participation in community to encourage change toward the future we all hope for.
This participation in the life of community, and facilitation of a change process is intended to build the capacity to identify the giftedness, skills and wisdom of the community, to work together across traditional boundaries, solve problems through understanding, compromise and consensus building, to generate resources and to implement internally developed approaches.
We have been saying for some time that faith congregations and not medical centers must necessarily become healing communities out of which teams could be deployed to the homes of those affected by HIV/AIDS as comforters, listeners, counselors, facilitators. Communities are mobilizing in unexpected and unprecedented ways to maintain hope, accept responsibility, and develop locally appropriate and sustainable responses. Faith communities have played a critical role.
New life goals
We are not indifferent to the consequences of various lifestyle choices, but our approach is always to begin where people are and to provide care through participation with them in the realities of their situation. For individuals in danger, such an approach must sometimes include throwing out a lifeline, like a needle exchange program in Melbourne. Accompanying people on their journey enables them to make better choices as they move forward.
But approaches are not necessarily effective just because they are politically correct. We waste no energy on condemnation of those affected, but we are not reluctant to point out the relationship between particular behaviors and infection, and the importance of avoiding those behaviors.
Love in the face of fear, Hope in the midst of despair
Our faith in the sufficiency of Jesus Christ motivates and sustains us, and it brings a message of unconditional love and transforming grace to those we serve. Love amid fear, joy amid suffering, hope amid despair are being experienced even by Zambian households where the fresh graves of young people surround village huts. -Mothers and fathers dying of AIDS are comforted by other family members who accompany them with singing and prayer as they cross into eternal life.
Forgive our indifference
"Father of mercies, God of peace, You have sent me, as my Lord was sent, into a world sick with hate. He proclaimed peace. He put hostility to death through the cross. He created in Himself one new humanity. I too would dare to be a peacemaker. Forgive me for my indifference. "
"(I have not) embraced the larger underclass of strangers. the mentally infirm, the disabled. the
AIDS afflicted, the incarcerated, the malefactor against my views and tastes, those I tend to distrust, to demonize to disdain or ignore. Father of mercies, faltering and weak my labor has been. Have mercy. " (Lyell Rader)
"Here at the cross in this sacred hour, here at the source of reviving power, helpless indeed, I come with my need; Lord, for Thy service, fit me I plead.
1. Tradition in Transition - Care as a Catalyst to Health, Healing and Integrated Mission, Ian
Campbell, International Health Programme Consultant, London, March, 1998.
2. Loss, Hope and Faith Through a Community Development Approach to H1V/AIDS - The
Foundation to an Expanded Response, Ian Campbell, The Salvation Army, 1998.
3. Community Counseling, A Handbook for Facilitating Care and Change -- an Integrated
Response to HIV/AIDS, The Salvation Army, ed. by Alison Rader, London, Revised, 1998.
4. Building Communities from the Inside Out, John McKnight, and John Kretzmann,
(Northwestern University), Evanston: ACTA Publications, 1993.
5. What Kids Need to Succeed, Peter Benson, Judy Galbraith, and Pam Espeland, (Search
Institute), Free Spirit, 1998.
6. A Prayer of Turning, Lyell Rader, The War Cry, October 3, 1998, page 16.