the disease spread and more people gained first hand experience with AIDS,
segments of the African American community began to organize in an effort
to heighten awareness about the threat presented by the epidemic.
By the 1990s, a small but growing cadre of activists, minority
community based organizations, and AIDS bureaucrats emerged and began to
agitate for additional resources for AIDS prevention, treatment and
research geared toward halting the spread of the disease in African
In Boundaries of Blackness, Cathy Cohen identifies two stages of
In the first stage, she documents how black gays and lesbians were
the first to organize around AIDS in the mid-80s.
Their early involvement was in tandem with the response of the
larger gay community and demonstrated their quick realization of the
threat that AIDS posed. Their
activism resulted in some of the earliest minority community based AIDS
organizations such as the Minority Task Force on AIDS in
, the Black Coalition on AIDS in
, the Minority AIDS Project in
and Blacks Educating Blacks About Sexual Health Issues in
important to note that Minister Louis Farrakhan and the Nation of Islam
were also prominent on this issue in the early years.
Under the direction of Dr. Alim Abdul Mohammad, the Nation of Islam
spoke out about the inadequacy of treatment options for poor people of
color. They established the
Abundant Life Clinic in
in 1986 in an effort to provide alternative community-based treatment
options for African Americans.
early activism was followed by limited engagement on the part of black
leaders and traditional institutions within the African American community
in the second stage of the black community’s response.
From 1987 to the early 90s, this phase was characterized by more
involvement from leaders and organizations that clearly saw the impact of
the disease in their communities. Their
involvement, however, was tempered by limited resources and, for some, old
beliefs about the transmission of AIDS and the types of people who
contract the disease. During
the 1990 debate surrounding the creation of the Ryan White Care Act, the
National Urban League applied pressure on Congress to protect the 15
percent set-aside for services to infants, children, women and families
with HIV. The Urban League was
also an early recipient of CDC funds to conduct HIV prevention and
education activities in African American communities.
This stage also saw the expansion of national minority AIDS
organizations like the Black Leadership Commission on AIDS, People of
Color in Crisis, Housing Works, and the National Minority AIDS Council
(Cohen, 1999). These
community-based organizations (CBO’s) specialized in providing HIV/AIDS
treatment, education and prevention services in communities of color.
growth of these indigenous AIDS service organizations occurred alongside
the development of federal legislation requiring culturally sensitive
local programs and community representatives from diverse populations to
serve on the local boards set up by the Ryan White CARE Act.
The legislative objective was to create a policy and political
environment more inclusive of minority populations who were increasingly
affected by AIDS. Although
more money became available to establish education and outreach programs
in communities of color, an unfortunate side-effect was that the minority
AIDS organizations found themselves competing with the longer established
organizations rooted in the gay community.
Central to the problems faced by minority
community-based organizations in cities across the country was a lack of
access to funds that would enhance their ability to provide critical
services. In many cases the
story was the same: longer
established, resource rich AIDS organizations based in the white gay
community continued to win grants and obtain other vital resources, to the
detriment of growing needs within minority communities.
Traditional CBO’s had become adept at obtaining funds, and their
members served in key positions on local AIDS boards that were influential
in overseeing the distribution of local resources and delivery services.
Newer minority AIDS organizations claimed that they found it
difficult to influence processes determining the allocation of AIDS
resources in the community.
Much of the discussion of inequitable funding
centers on the question of racism in the white gay community.
Charges of racism in the gay community are nothing new (Cohen 1999;
Shilts 1986). What was different in this case was the charge that the
allocation of AIDS funds favored white gay communities despite the fact
that African Americans outpaced whites in terms of the number of new AIDS
cases diagnosed. Thus, many
believed that the cultural bias of existing institutions would be a factor
that contributed to skyrocketing infection rates in African American and
It was also obvious that hard-hit black and Latino communities
experienced a unique set of circumstances unfamiliar to traditional AIDS
service organizations. First,
African Americans and Hispanics shared a history of oppression and
exclusion that kept them outside of the social and economic mainstream of
. Unlike the high
socio-economic status of gay white men, minority populations remained
disproportionately represented among lower-income families.
Their economic condition also dictated their relationship with the
health care infrastructure. It
is telling that in 1999, African Americans, Hispanics and Asian/Pacific
Islanders comprised 75% of all uninsured individuals in the United
States—a disenfranchisement that exacerbated health disparities and
created a climate conducive to the spread of disease.
Second, the primary mode of transmission among minorities proved to
be different than that of gay white men.
While men having sex with men would continue to influence
transmission of HIV/AIDS among African Americans, substance abuse would
prove to be the primary factor fueling its spread.
Specifically, injection drug users and individuals engaging in sex
with injection drug users were at risk because of their habit of sharing
used needles and other contaminated drug paraphernalia.
Again, poverty related issues often accompanied substance abusers
and these factors would serve as a barrier for providing culturally
competent care at traditional AIDS service organizations.
with these dynamics and seeking to increase service capacity in black and
brown communities, minority AIDS organizations took their complaints to
Capitol Hill where they found a receptive audience in the Congressional
Boundaries of Blackness: AIDS
and the Breakdown of Black