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FEATURE
by Debbie Fraker and Charlene Perry
World AIDS Day, Dec. 1 1990, will
recognize that women are increasing
affected by HIV and that the place of
women in the AIDS crisis has too often
gone unrecognized and been under-appre
ciated.
Worldwide, it is estimated that 150,000
women have developed AIDS; almost 10
percent of these live in the U.S. Since
1987 the number of women with AIDS
has increased 75 percent. But, because
women with AIDS are frequendy not
included in statistical counts, these num
bers do not begin to reflect the size of the
problem. Many of the opportunistic infec
tions that are unique to HIV infected
women do not show up on the CDC’s
lists. Women have also not been included
in many drug trials so we know little
about how the drugs or even the virus
itself is affecting women.
Many more women, however, have
been affected by HIV by choice. They
provide direct care and support to the
seropositive; they are organizers in AIDS-
related political activities; they are the
founders, directors and staff of organiza
tions working to find and administer bet
ter drugs and more effective healing prac
tices; their numbers are myriad among
those who are searching for a cure.
Increasingly—as more men and women
of color are being diagnosed with HIV—
women of color are becoming involved in
the effort to extend AIDS education and
care in their communities.
In fact, women provide the majority of
the care provided to those with HIV.
How does it happen that women—and
in particular lesbians, statistically the
group at lowest risk—are so involved in
the AIDS crisis? And how do women
feel about taking on the stereotypically
female role of caretaker in a situation
when most of their clients are men? The
following are profiles offer a brief
glimpse of tiny number of Adanta women
affected by AIDS
Lesbians and AIDS
Robin Brown and Fran Greenfield are
lesbians who helped found a support
group for persons living with AIDS, with
special emphasis on Jewish PWAs. The
group's name is AIDSchaim—"chaim"
meaning life and punning on the words
"etz chaim” meaning tree of life. Robin
and Fran are members of Congregation
Bet Haverim, Atlanta's Reconstructionist
lesbian and gay synagogue. The support
group arose partially in response to the
death of two members without organized
support system to help.
Other than watching someone they
care for deeply die, for both women the
most difficult part of running the group
has been the overwhelming need they
have encountered. It is important, they
feel, not to take on so much responsibility
Women and AIDS
World AIDS Day recognizes the women who are infected and
their sisters who are battling to end the epidemic.
that they lose effectiveness altogether.
The group has attempted to cope with
this challenge by rotating responsibilities
rather than using the one-buddy system
other AIDS organizations have used. "It
is a very sane way to provide a service
and still have a life." Robin is quick to
point out that she doesn't feel "expected"
to be a caretaker because she feels a
shared effort has been put forth by both
the men and women in their group.
Fran expects the caretaking response
from herself, but is frustrated with a lack
of reciprocity from men on women’s
issues. "I wouldn't want women to do
less, but I would want men to do more."
Karen Boyles will be the new execu
tive director of Project Open
Hand/Atlanta as of Dec. 10. You know
Open Hand—they deliver meals to the
homes of PWAs six days a week. Karen
has worked as a volunteer driver since its
founding two years ago. She comes from
a nutrition program for the aging into one
of Atlanta's most visible AIDS service
organizations. Her greatest concerns as
she takes that leap are the ignorance and
prejudice that attach moral judgments to
HIV disease.
Being expected to be a caretaker is not
a problem for Karen. She recognizes that
it is harder to be a caretaker than not to
be, but she is not willing to let herself use
feminist resentment of being expected to
nurture as an excuse not to fill this need.
"We are all caretakers, men and women,
but some of us neglect our duties!"
As a driver, Karen's greatest rewards
were from knowing that "the person I take
meals to needs them and it's helping them
stay home instead of being on the street or
being forced into another living situation."
Karen recognizes that a single meal also
provides the freedom to enjoy one's digni
ty. "Everyone deserves respect and digni
ty, and this disease has made it easier for
people to be stripped of that."
Karen Genet is an MSW who works
with the Hemophilia Society of Georgia.
She is also a NAPWA volunteer. As was
the case for many lesbians, the thought
occurred to her that this was not "our"
issue. But she accepted the HIV epidemic
for what it was—a "people issue.” She
knows she can make a difference both
professionally, as a social worker, and
simply as someone who cares, offering
information, empowering people to turn
their lives around.
Working with AIDS has changed
Karen's perceptions about many things.
As someone who thought they "got along
well with others," she was taken aback by
the sexism and power struggles within the
gay community. She then encountered
gay men confronting their doctors, mak
ing treatment choices and empowering
themselves by trying to improve their
health. As someone who grew up believ
ing "Doctor as God," she is now a firm
believer in choice when dealing with the
medical establishment.
Karen is a fan of grassroots organiza
tions such as ACT UP and Queer Nation.
She gets "angry at people who get angry
at any group that brings much needed
attention to this disease."
"Men have adopted the self improve
ment approach and learned to take care of
themselves, so I don't consider myself a
caretaker," offers Karen. "You make the
choice to deal with it or you don't."
Women of Color Reaching Out
Many women of color have taken on
the challenge of working with AIDS as a
result of the need for more education and
support in their communities. Janet
Cleveland, a black, heterosexual woman,
is the Outreach Coordinator for the AIDS
Research Consortium of Adanta (ARCA).
ARCA offers a central coordinadng facili
ty through which individual physicians
can be involved in drug research.
It is Janet's job to deal with the increas
ing rate of HIV infection in the heterosex
ual population, particularly among people
of color and women. She is trying to get
more women and minorides involved in
drug and treatment trials.
"Persons with AIDS have got to be the
most courageous people in the world,"
Janet says after three years of work with
the disease. She is particularly impressed
by the number of PWAs doing volunteer
work for AIDS organizations—an impor
tant kind of self-empowerment.
Although she seems to resent being
"expected" to be a caretaker, she does not
begrudge that response in herself.
"Nurturing is part of my personality.
We're brought up to nurture." Janet point
ed out that women are socialized even
more strongly in the African-American
culture to be caretakers. "We have to take
care of things!"
The most rewarding part of this work
for Janet is seeing people living positively
with AIDS rather than simply surrender
ing. "We need to see it as a manageable
problem and get over the stigma." Her
fears stem from the potential she sees for
AIDS to wipe out a whole generation.
"Sounds dramatic, I know, but I really
think this disease has that potential."
Margie Shannon is the Site
Coordinator for the Southern Christian
Leadership Conference She started as a
drug and alcohol coordinator in 1983.
Her involvement with AIDS came as the
direct result of her clients expressing their
fears about the disease. Her ignorance
caused her to refuse clients for a six
month period, a time when she would
send her clients to the Adanta Gay Center.
Her own "red flags went up" when she
realized she was sending her African-
American peers elsewhere for help she
could not provide.
As she became knowledgeable about
HIV, Margie was struck by the fact that
her peers were not accepting the reality of
AIDS. In her efforts to educate people of
color, SCLC gave her the position of
implementing its HIV educational pro
grams. Today she employs school lec
tures, training seminars, street outreach
and in-home safe sex parties to get the
word out.
Margie is astounded by the increase in
African-Americans affected by this dis
ease. Because she is a woman driven to
educate and nurture her community, it has
been a natural progression for her to
embrace this disease fully.
She and others in her field have had to
identify and coin terminology to temper
attitudes within their community. As
Margie states, "I'm just trying to use any
means necessary to inform. In trying to
change someone's belief system, you find
something they can relate to."
Faith, Facts and the Bridge Between
Kathryn Cartiedge is a Presbyterian
minister and the director and founder of
the Atlanta AIDS Interfaith Network, a
network of churches, synagogues and
clergy who are willing to provide pastoral
care or services for the HIV infected.
Because the majority of people she sees at
AIDS Interfaith are men, Kathryn chose
to facilitate a women's support group, in
part, as a learning experience. "We're still
learning about how women are dealing
with HIV," she says, "the similarities to
men and the differences."
Kathryn's greatest fears about AIDS
are of the unknown. She feels that we are
all "on the crest of the wave that will
drive home the fact that anyone could get
AIDS." She is concerned about the pub
lic's reactions to the statistics being pub
lished by the CDC and others. Because
certain people, like heterosexual, monoga
mous women, do not fall into the so-
called "risk" categories, they are not get
ting tested.
Women are contracting AIDS primari
ly from IV drug use and sex with infected
men. The women in her support group
don't necessarily fall into the CDC’s
"high-risk" categories. As a result, women
Continued on page 11
Kathryn Cartiedge,
Founder of Atlanta AIDS
Interfaith Network
.. x, 3. ■ , , M
Margie Shannon of the
Southern Christian
Leadership Conference
Robin Brown and Fran
Greenfield helped found
AIDSchaim
Janet Cleveland of the
AIDS Research Consortium
of Atlanta
Karen Genet of the
Hemophilia Society of GA,
and NAPWA volunteer
6
Southern Voice/November 22, 1990
