September 26, 2001
Women with HIV/AIDS
face distinct challenges
Because HIV/AIDS is still largely seen
as a disease that affects gay males, it's easy to underestimate
its impact on women. But as the number of women, particularly
women of color, contracting the disease continues to increase,
it warrants serious attention, says Patricia Clark-Ellis,
a CSUS social work professor and interim associate dean of
the College of Health and Human Services.
Since 1999, Clark-Ellis has been working with the Sacramento
Women's HIV+ Support Group for women with HIV/AIDS. She has
found that women with HIV/AIDS have specific legal, psychosocial
and health issues.
For example, most of the women Clark-Ellis is in contact with
have children. As a result, they must plan for their children's
futures in case they become incapacitated or die.
"Joint guardianship allows the mother to participate
in selecting guardians who will care for their children if
they become disabled or die. If there is no guardianship in
place, their children could be placed in foster care or with
relatives that the mother would not prefer," Clark-Ellis
says. "Joint guardianship, which is specific to California,
gives women peace of mind, knowing their children will be
with people who will properly care for them."
In addition to custody concerns, women with HIV/AIDS have
to cope with the multiple problems that come with having a
terminal illness. "A diagnosis of HIV infection is a
devastating, life-changing experience that forces a woman
to deal with a number of issues that she has never had to
face," Clark-Ellis says.
Stressors may include fears of infecting others, coping with
possible ostracism, preparing for loss and the need to redefine
familial roles, she says. The women are often confronted with
sociocultural issues such as poverty and inadequate health
care and social services. Once others know a woman has AIDS
it can become more difficult for her to get housing, insurance
and other basic necessities.
Clark-Ellis adds that living with HIV/AIDS means a woman must
not only manage the physical and emotional dilemmas, but human
rights issues. In addition to guardianship, these legal issues
include confidentiality, discrimination in the workplace and
the educational system and planning for the future.
"AIDS carries a stigma, particularly in the African American
community, because of the association with intravenous drug
use, risky behavior and homosexuality," she says. "Most
of the women I interviewed contracted HIV through their sole
partner or spouse and not through drug use."
Despite lingering perceptions that HIV/AIDS is a disease that
affects gay men only, HIV infection among women in the United
States tripled between 1985 and 1999. And despite the false
sense of security that comes from news of drugs to combat
the disease and the sight of people with HIV or AIDS who seem
perfectly healthy - like Magic Johnson - it's still a fatal
Clark-Ellis points out that many women with HIV/AIDS are poor
women of color, between the ages of 25 and 44, and are single
parents. They are often caregivers for an older family member
or spouse. Therefore, they tend not to take care of their
own medical and physical needs.
Beyond using her background as a lawyer to help the women
set up guardianships, Clark-Ellis assists with housing and
social security issues and brings in clothing and toys. She
also encourages the women to call her at any time.
"What I thought was going to be a research project has
evolved into much more," she says. "I care about
the welfare of these women. I started out viewing them as
subjects for my research but the relationships have evolved
into friendships. I truly admire their strength, their faith
and their optimism."
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