Case worker’s reward is helping people,
Lincolnite’s home
also branch office
By Jana Pedersen
Suzie Miller Schoen has a tough
time explaining her .work.
“For me,” she said, “there is no
such thing as an average day.”
As a Lincoln case worker for the Ne
braska AIDS Proiect, Miller Schoen may
spend an entire day on the always-ring
ing AIDS project telephone.
And when the phone rings, her work
just begins.
Some calls request speakers for group
events. A few are vol
unteers offering to help.
Others come from so
cial or medical agen
cies, sometimes return
ing her messages,
sometimes seeking her
experience.
But most calls are
the kind that make Miller Schoen’s job so
satisfying, she said. They are clients
seeking to solve everyday problems.
“I like to be able to offer those services,”
she said. “What I do is deal with the
issues at hand, and that is whatever it is
they need.”
Those issues vary, she said. Some clients
need help with paperwork, whether its
the kind government requires to give fi
nancial aid or the kind hospitals require
to give medical aid.
The AIDS Project telephone num
ber can be the first “official” call
people with HIV or AIDS make
for help. That telephone line, along
with the Lincoln office of the Nebraska
AIDS Project, is in Miller Schoen’s home.
Country wal Ipaper and sturdy wooden
furniture adorn the AIDS Project office,
which doubles as a dining room. A black
cat rubs her neck agai nst a chair. Organ
ized piles of paper fill a work desk in the
corner, while the phone rings nearby.
At first glance, the surroundings seem
appropriate. The caring tone Miller Schoen
takes when speaking of a client is just a
bit shy of motherly.
Ana, sne joked or ner iod, jjometimes
I describe it as being a den mother."
But such a patronizing term hardly
fits. Miller Schoen said patronizing is the
last thing she wants to be.
“I don°t want to come off as . . . only
happy when I can help others make their
lives nappy, because I’m not that way at
all,” the mother of two teenagers said. “I
don’t like to do that. I like it wnen (clients)
can take care of themselves.”
And her tone is far from motherly
when she speaks of the disease itself.
“I hate this disease.
“Sometimes I have a fantasy of taking
something that breaks easily, like glass,
and throwing it against a brick wall and
just screaming that I . . . hate it.”
But that hatred, she said, is not a
product of her work.
Sometimes that outlook is hard for
people to understand. Those who don’t
know Miller Schoen are puzzled that she
doesn’t get depressed by her work.
The answer, she said, is attitude.
Instead of losing hope, she said, “I
really do get strength from the clients
and the way that they are living their
lives.”
She can give examples — many of
them, in fact. And when she gives them,
a natural, simple smile appears.
One of her clients wanted to straighten
his teeth before he died, Miller Scnoen
said. And when he died, he still had
braces.
“I think it’s great,” she said. “I think
it’s real hopeful.”
Miller Schoen said she also found hope
from events at Christmas — a time as
sumed to be depressing by those who
don’t know people with AIDS.
At Christmas this vear, she said, the
AIDS Project received donations of gifts
for children whose parents have the dis
ease.
While distributing the gifts days be
fore Christmas, one family insisted she
stav for a while.
^Immediately they opened the pres
ents,” she said. “These people don’t wait
for Christmas. They nave Christmas
whenever they can have Christmas. That
was Christmas that day.
“It was so much fun to be there because
they are living for the moment. If the
moment arises, they say, ‘Let’s have it.
Let’s celebrate it. Let’s feel it. Let’s live it
as much as we can/ And that’s how they
deal with their lives.”
Suzie Miller Schoen is a caseworker with the Nebraska AIDS Project.
When she first joined the project
in 1990, Miller Schoen had five
clients. Now she averages about
35. At the Omaha headquar
ters of the Nebraska AIDS Project, each
of two case workers has some 60 clients.
The number is growing, Miller Schoen
said, and the clients are changing. While
most of her clients are gay men, sne said,
an increasing number are women and
others who have contracted the disease
through heterosexual sex.
She attributed the expansion of the
disease to a number of factors, but they
all stemmed from ignorance.
Miller Schoen said government offi
cials should have acted more quickly to
educate the public when the disease first
was identified.
“I think public health officials were
remiss in not coming on stronger,” she
said. “Everyone was concerned about
alarming people instead of telling people
about what was going on.”
One reason for the lack of action, she
said, was that, at the time, HIV was
spreading among homosexuals.
The American stereotype that AIDS is
a gay disease must end, sne said. As the
disease spreads among heterosexuals, she
said, the response to it should be modeled
after the gay community’s actions.
“The gay community got their acts
togeiner, sne said.
When AIDS first was identified in
metropolitan areas like San Francisco,
Miller Schoen said, it was difficult for gay
men to accept that it was spread through
sexual contact.
“Sexual freedom originally was a state
ment for the gay population to express
their freedom, she said.
“... They were very reluctant to listen
to anyone who said, ‘You’ve got to modify
your sexual behavior.’ They didn’t want
to do it.
“But they did. There were people on
the street corners of San Francisco show
ing how to put a condom on a cucumber or
a banana, saying, ‘This is the only way we
have right now that you can help protect
yourself.’”
Now, heterosexuals must learn the
same lesson, Miller Schoen said.
Those who think preaching abstinence
is the answer are not helping stop the
spread of HIV, she said.
Although the only certain way to avoid
the virus is to abstain from sex, she said,
it is unrealistic to think most people, es
pecially youth, will do so.
The reality is people are sexually active,
young people, young adults are sexually
active, she said. “So, I would be negli
gent if I didn’t stand up and tell you how
to protectyourself, too.”
Miller Schoen said that teaching youth
to wear latex condoms was the realistic
way to prevent the spread of HIV.
“This disease could stop today if every
one who is sexually active or an (intrave
nous) drug user would start using con
doms and stop sharing needles.”
Sending that message to youth is espe
cially important, she said.
“The very thing that’s so wonderful
about youth will get them infected,” she
said. “They think they’re invincible. That
may get tnem in trouble.”
Some young people complain that
condoms are uncomfortable, she said. But
her answer to that complaint is to the
point:
“I don’t know of any sex that’s so good
it’s worth dying for.”
The best way to prepare youths to use
condoms is to teach them role-playing
skills, Miller Schoen said. Then, tney will
know how to ask sexual partners to use
condoms.
“The power to make good choices —
that will keep them from contracting the
virus.”
But because the spread of the disease
centers o 'filler Schoen said,
officials education about
AIDS differently from other public health
issues.
I hey talked to us about ringworm,
she said. “They talked to us about how it
was spread and how we can stop the
spread of it and all those kinds of things.
Do they do that now? It’s not the same
kind of effort.”
While public health officials are work
ing to improve AIDS education, she said,
“we haven’t heard anything on high, like
Oval Office high.”
Miller Schoen has, she said, a stan
dard analogy:
“If this disease affected only politi
cians, only their vocal chords and their
sexual organs, we would have not only a
cure but a vaccine.
“Or maybe a whole new set of politi
cians. Who knows?”
The lack of emphasis on education has
caused problems in the long run, Miller
Schoen said.
Now, much of the public money for
AIDS must be spent on medical care and
social services, because it wasn’t spent on
education years ago. For states like Ne
braska, which ranks 41st nationally for
incidents of HIV or AIDS, that means
needed funding for education will go else
where.
“This is not a crisis,” she said. “This is
an ongoing problem. Crises have a peak
and then some resolution.”
For Nebraskans with AIDS and
their loved ones, a way of coping
came at the beginning of Miller
Schoen’s work with the AIDS
Project.
In October 1990, the Names Quilt came
to Lincoln. The quilt is made of sections
with messages and names of people who
have died of AIDS-related illnesses.
Working to bring the quilt to Lincoln
gave Miller Schoen a “wonderful experi
ence in camaraderie,” she said.
And the quilt itself is moving, she said.
She called it “a way to pour out some
love, to cry, to grieve.
“And that’s how I started this job, so
that’s part of me.”
The quilt itself contained powerful
statements, Miller Schoen said.
Some statements were sad and hard to
read. Other messages told of the prob
lems associated with AIDS.
One, she said, was particularly mean
ingful:
“‘For killing two men, you gave me a
medal. For loving one, you gave me dis
honorable discharge.’
“That kind of says it all about our
society and this disease,” she said.
“It's a disease that has affected so
many people, but it often affects them
privately because they’re afraid even to
talk to their neighbors.”
Because of social stigma attached to
the disease, she said, sometimes AIDS is
not mentioned at funerals of those who
have died from AIDS-related illnesses.
“Families deal with that alone, or the
families have not been there, and then
friends deal with that alone.
For those people — those who have
HIV or AIDS and those who love them —
Miller Schoen works to make life simpler.
“I wish there was some way that they
didn’t have to go through some of the
things they have to go through. . . . It’s
hard enough to have to deal with the
disease ana not have to bother with all
the paperwork that goes with being sick
and hospitalized andhavingto take care
of all that.”
Perhaps “guide” would be a more
appropriate term to describe Miller
Schoen’s work: as she leads clients
through masses of paperwork, as
she shares tne ups and downs of each
client’s journey, as she educates others
on how to prevent the disease.
After all, a guide requires flexibility to
deal with changing elements. And Miller
Schoen’s work demands flexibility.
Of her average day, she said, “I may
start out thinking, ‘I’ll put on ieans, I
don’t plan to go anywhere,’ and I’ll think,
‘I’m going to get all this paperwork caught
up today.’ Tnen, I’ll get a call from a
hospital asking me to come out and visit
a patient, and I’ll go.
“... It’s so hard to describe it.”
It seems so.
But even if Miller Schoen can’t detail
her daily tasks, she does know what she
wants in the long run for her job: ^
“It’s one job Fd like to see go
because it wasn’t needed any more."