wfn.org | Native Americans confront spread of HIV/AIDS

[NewsDesk <NewsDesk@UMCOM.UMC.ORG>]

Oct. 22, 1998  Contact: Tim Tanton*(615)742-5470*Nashville, Tenn.
{610}

NOTE: This story is accompanied by a sidebar, UMNS #611.

By Deanna Armstrong*

OKLAHOMA CITY (UMNS) -- They came from locations as diverse as Nome,
Alaska, Phoenix and upstate New York to learn more about the spread of
HIV/AIDS in Native American communities. 

The Leadership Development Committee of the United Methodist Church's
Native American Comprehensive Plan (NACP) hosted the AIDS conference
Oct. 15-17 to help pastors and lay people learn more about the disease,
hear testimony from people infected with HIV, and develop skills in
dealing with patients and their families.

The conference was part of the plan's mandate at the 1996 General
Conference, the top lawmaking body of the church, said the Rev. David
Wilson, leadership committee chairperson and staff member of the
Oklahoma Indian Missionary Conference.

The goal of the workshop was to begin to discuss the problems; to
explore some models for education, prevention and care that could assist
participants in creating ministries in their own communities; and to
build a network for people providing HIV/AIDS care in the Native
American community, Wilson said. 

"Our primary purpose is to create greater awareness of the problems in
the Native American communities and to help them understand this is not
just a white homosexual disease as the stereotypes would indicate," he
said. 

Research shows the rate of HIV/AIDS infections is increasing rapidly in
the Native American community, particularly on the reservations and in
closed communities, Wilson said. There are 2 million Native Americans in
the United States, and 1,700 are infected with HIV. For every one
diagnosed, there may be five others who don't know they're infected. And
because it takes so long to diagnose, people who are infected may be
spreading that disease for years before anyone knows it.  

The Center for Disease Control reported that the highest concentration
of AIDS cases among Native American populations are in Oklahoma,
California, Alaska, Arizona and Washington, where there are a large
number of  Native American populations are high, and where there is a
high concentration of transient workers moving from one location to
another through port cities or along interstate highways. The conference
leadership concentrated on getting participants from those states to
attend the symposium. 

Indian people have a great reluctance to talk about AIDS, said Ray
Buckley, a Leadership Committee member and editor of the Native American
publication Voices. Buckley gave the conference's opening address.

"There is a wall that comes up," he said. "They don't want to hear about
the problem because they don't know what to do about it. It is a dilemma
for the church as well, and it is time it ought not to be." 

National statistics show that AIDS-related deaths are down overall, but
in Native American communities those statistics don't mean much. While
proportionally still lower than other areas of the population, HIV/AIDS
infections among Native Americans in the 1990s have climbed
dramatically. 

That's especially true among women. The number of HIV/AIDS-infected
women is two and a half times greater than in other segments of the
population. Health officials say women are infected primarily through
heterosexual transmissions and intravenous drug use. Women are much more
likely to be infected by a man than a man is by a women because of the
biological differences between the genders.
 
"We have to keep reminding ourselves that when we lose our people, we
lose a part of our circle of life," said Danette Geren, member of the
Muscogee Creek Nation and HIV/AIDS instructor for the Tulsa chapter of
the American Red Cross. "When our women are infected, we jeopardize our
children and our future.

"For a long time, we felt safe," she said. "We said, 'This is a white
man's disease, it is spread among homosexuals. It won't affect us here
on the reservation.' But we travel all the time -- to visit friends, to
ceremonials, to conduct our business. Our behavior puts us at risk and
moves this disease across the country.

"We live on reservations in isolated areas, we are rural, we are
homeless, we experience life in many different ways, but we are all
vulnerable."

Many Indians don't realize this is not a people disease but a behavioral
disease, Geren said. "What we do puts this disease in our body. HIV is
still spread the same way -- through sexual transmissions, through
sharing of needles and infected blood. It is 100 percent preventable
through changes of behavior."
 
Alcoholism, high among Native Americans, has a significant link with
HIV/AIDS, Geren said. Drug use is as high as it has ever been,
especially among more affluent, more mobile elements of society. But
drug users are walking in every facet of life. Substance abuse-- either
alcohol or drugs -- alters behavior and puts people at risk.

There is also a high incidence of teen pregnancies and sexually
transmitted diseases. Forty-five percent of Native American mothers are
under the age of 20. 

"We don't talk about it because it is a sexually transmitted disease,"
Geren said. "We don't talk about these things in our culture. Children
raised in the old ways or in boarding schools have no one to talk to
about sex and the disease. 

"We have to fight the disease, and we have to have 21st century warriors
and fight the disease with 21st century weapons -- with education. We
have to talk to people," she said.

"We also have to learn how to care for our infected and affected people.
Native American women see their role as taking care of their families
and their communities. When they are infected, who takes care of them?" 

Jaci Triplett-Lund, who is a case management worker and trainer for the
National Native American AIDS Prevention Center/Ahalaya Project in
Tulsa, Okla., developed the care-giver theme further in one of the
workshops. She said the traditional Native American family is very
self-sufficient, and members take pride in caring for their own.

HIV/AIDS is difficult to deal with because of the shame attached to it,
she said. "The media tells us this is a white male, homosexual disease.
To get it, you had to be homosexual, promiscuous, a drug user, alcoholic
or prostitute. If you have the disease, you had to do something wrong.
You bring shame to the family."  

News spreads quickly in a rural area, she noted.

In the Navaho nation, 85 people are officially identified as having
AIDS, said Elmer Yazzie, lay pastor on the Navajo reservation from
Ganado, N.M. They are isolated in a home on the reservation in the
Window Rock area. Tribal elders don't want people to know where they are
because they fear it might spread. They also fear the publicity.

The Navaho reservation is developing programs to address youth problems
and alcohol abuse, Yazzie said. 

"Church is just like family," he said. "Some families are loving, some
are not. We are not educated. If we don't know what something is, we
stay away from it. I am scared for the people who are not educated on
this.  

"The only way to get help for this is to tell the truth and get it out
in the open. How can we help them or even pray for them if we don't
know?" 

Lund said that the confidentiality surrounding HIV cases poses a
difficulty in getting information to families and communities. Health
officials and community leaders cannot share information.

Families of persons infected with AIDS typically go through several
stages of emotion when dealing with the disease, including denial,
anger, grief and shame.  

Many times they try to care for the family member with no outside help.
For people who have advanced to the AIDS stage, home health care,
hospitalization or hospice care is available in almost any community.
Lund urged care providers to encourage families to use hospice care
because it provides support for the family, giving them someone to talk
to, someone to take over when the family needs to run errands, take care
of
business, or just take a break from constant care. 

"One of the greatest gifts we can give is to help AIDS patients die
peacefully," Lund said.  "Let them die with as much dignity as
possible."

Sometimes people who do all the right things still get infected with
AIDS because someone else who is in a monogamous relationship with them
has not been monogamous or has been involved in at-risk behavior.  

Lisa Tiger, 33, a member of the Muscogee Nation, cheerleader, homecoming
queen of her senior class and former regional arm-wrestling champ, told
participants of contracting
the virus from a boyfriend she thought she loved and would spend the
rest of her life with. He, however, had been involved with other people
and became infected. 

"Too much good has come out of this for me to feel bitter about him,"
Tiger said. "People ask me, 'Don't you feel sorry for yourself and say,
why me?'  I answer, 'Why not me?' And why not you? If you are doing
things that put you at risk, why not?
 
"I am determined to live a long, health life, and try to take care of
myself and do the best with what I have control over."

Instead of channeling her energies into being bitter, she chose to
champion AIDS awareness. She speaks at tribal gatherings, schools and
conferences across the country. She believes that a return to
traditional values will give tribes the strength to work against
alcoholism, drug addiction, sexual promiscuity and violence. 

She has founded the Lisa Tiger Fitness Foundation to help Native people
take better care of themselves. She also is working to adopt five foster
children she met at a shelter while visiting the Pine Ridge Reservation
in South Dakota. Setting goals, eating well, exercising and surrounding
oneself with a loving environment are key elements of surviving the
disease, she said. 

With increased medical understanding and treatment programs, people can
manage the disease and maintain a normal lifestyle, much like people
like diabetes, symposium speakers said. With the proper care, people can
live with this disease like any other chronic illness. The cost may be
high - drug therapy may cost as much as $12,000 a year. Discipline is
also required to take the medications at the scheduled times and to
learn to lead a healthy, stress-free lifestyle with proper diet and
exercise. But the life expectancy of someone living with HIV is 10 to 15
years longer than it was just three years ago. 

HIV/AIDS case workers also emphasized that love, support and acceptance
from caregivers are equally important factors in surviving the disease.
They discussed how important it is to see the whole person as an
individual and not just a patient with AIDS. 

Workshop participants were introduced to some of the social service
resources that might be available in their area, like the American Red
Cross, the Center for Disease Control and the Regional Aids Interfaith
Network (RAIN), which espouses the philosophy that people of all walks
of life and denominations can do ministry without passing judgment on
the behavior. Workshop leaders urged participants to create
opportunities for education and training in their churches, schools and
community groups.

Discussions centered around how to help people overcome their homophobia
and support existing care-giving groups. Working through traditional
Native American gatherings, powwows and talking circles, and sharing
information through story telling and legends may be a way to get people
to discuss the sensitive subject.

Participants left the three-day meeting with new ideas for caring for
people with HIV/AIDS and a network of sources to call upon for help.  

"I came to this meeting because I was invited, but even though I work in
social work, I didn't know why I was here. Now I do," said Georgina
Kacyon of Sitka Alaska. "There are lots of opportunities for me to share
this information through the United Methodist Women and the Native
Ministries committee in the Alaska Conference. We can do a lot in the
area of prevention, and walk the walk and talk the talk in caring for
our brothers and sisters."
# # # 
*Armstrong is a Kansas City, Mo.,-based correspondent for United
Methodist News Service. 

United Methodist News Service
(615)742-5470
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