Abstracts Vol. 1 [International Conference on AIDS (11th: 1996: Vancouver, Canada)]

Tuesday, July 9, 1996

Tu.D.480 - Tu.D.485

Tu.D.480
ACTING ON THE UP AND UP:THE RISE OF PEOPLE LIVING WITH HIV/AIDS
AS A NEW SOCIAL MOVEMENT
Woolcock, Geoffrey W E*, Grubb, 1.**. *La Trobe University, Melbourne, Australia;**
National Centre in HIV Social Research, La-Trobe University, Melbourne, Australia.
Issue: The emergence of People Living With HIV/AIDS (PLWH/A) as a new social movement poses a significant challenge to other key players in shaping a contemporary
HIV/AIDS response in western developed nations.
Project: Much HIV/AIDS research assumes the powerful influence or the gay community in
shaping policy Recently PLWH/As have become crucial, particularly in the community-based
sector.This political & sociological study analyses the relationship between two interweaving
social movements - the gay and PLWH/A movements, focussing on the dynamics and methods sought in resolving conflicts between these movements. Practical experience comes
from the authors' terms as manager of a regional community-based HIV/AIDS education
program and as member of the national PLWH/A executive.
Results: Social Movement theory is able to illuminate the instrumental/expressive dichotomy apparent in the gay and PLWH/A movements - the push for formal institutional reform
versus more external, symbolic challenges.While both movements have effectively assimilated these tendencies, they are also the primary source of tension within and between movements. Struggles around representation are often exacerbated by the state's growing inclination to adopt corporatist modes of negotiation.
Lessons Learned: The emergence of a powerful PLWH/A social movement affects significant
implications for representation and legitimacy in fashioning a contemporary response to the
HIV/AIDS epidemic.While the gay movement has borne the brunt of these arguments, the
implications are relevant for policy makers, service providers, and researchers alike.
GWE Woolcock, School of Politics, La Trobe University Vic., 3083 Australia
Telephone: [phone] Fax: 613-479 I1997, email: [email protected]
Tu.D.48 I
AN HIV/AIDS ORGANIZATION OF COMMUNITIES - EMPHASIZING COMMUNITY
BUILDING, CONSULTATION AND EVALUATION.
Jayaseelan, Julian. Executive Director, Pink Triangle Malaysia.
Issues: Asserting community efforts in prevention and care within a cultural and political climate that is suspicious of efforts which is non judgmental of peoples behavior:
Project: A comprehensive organizational strategy that encompass HIV/AIDS prevention and
care, rights advocacy and networking with governmental bodies. Small scale, people centered prevention and care projects for community groups - MSM, transsexuals, sex workers,
IDUls, PWAs - which are excluded or antagonized from mainstream HIV programs.
Empowerment for: self management of projects and inclusion in all levels of decision making. Strengthening efforts/communities by consolidation. Approaching suspicious sectors of
societies by consultatory rmeans. Developing participatory research methods to ensure
effectiveness and growth.
Results: Small, people centered methods (outreach, peer support and focused discussions)
are effective for communities that are traditionally disempowered. Empowerment allows for
behavior change and project expansion. Collective/ team orientated management allows for
creative working strategies. "Consultation not confrontation" neutralizes opposition to
NGO efforts. Participatory research methods allows communities to evaluate and track
their programs.
Lessons learned:The process of asserting cornmmunity efforts within the national structure is
possible after establishing credibility strength and professionalism. Including community experts
in programs would ensure a more rational, just and efficient response to the epidemic.
Jayaseelan, Julian. PO.Box 1 1859, Kuala Lumpur, 50760 Malaysia.Tel: [phone] I1
Fax: [phone]
Tu.D.482
AN ASSAY IS A TEST:WOMEN LIVING WITH HIV AND ACTIVISTS HELPING
RESEARCHERS COMMUNICATE TO PEOPLE WITH HIV
Karen L. Lyons,* Davids, J.,* Gold, R.,** Russell, A.,*** Smith, L.* *Project TEACH,
Philadelphia FIGHT; **Temple University; ***ACT UP Philadelphia
Issues: Issues relevant to women living with HIV and their communities have finally begun
to be addressed by many researchers and physicians. However, some women living with
HIV who attend scientific meetings, treatmrent conferences or training programs have
become firustrated by the unfamiliar language and standards of communication used to
share information.When presenters do not accomodate mixed audiences, many women
are not able to give meaningful input on the design and implementation of research, or
bring back important, life-saving inforrration to their peers.
Project: Project TEACH is a peer educator program of low-income people of color living
with HIV Members of Project TEACI-- produced a vocabulary list of terms used in
HIV/AIDS research and treatments, along with suggestions for presenting to those without
a scientific background without sacrificing scientific concepts.
The Philadelphia Department of Health sponsored a conference on Women, HIV Disease,
and Perinatal Transmission this fall. A presenter from the National Institules of Health gave
a comprehensive overview of perinatal transmission research in "medical language.
Women from Project TEACH worked with HIV-negative women treatment activists to
translate the presentation, with the permission of the author into a form that is understandable to their peers.
Results: HIV+ individuals with no scientific background have created a guide to assist
researchers in presenting data in ways that can be better understood by a range of affected
individuals.They have demonstrated the ability to translate an entire presentation without
losing substantial content.
Lessons Learned: Cunling edge scientific and medical information can be made understandable to a wider range of affected individuals if researchers consult with HIV peer educators when designing their presentations and publications.
Karen L. Lyons, 1233 Locust St., FI. 5, Phildelpria, PA 19107 USATel: 2!5-985-4448
Fax [phone] Email: [email protected]

Tu.D.483
THE NATIONAL WOMEN AND HIV PROJECT: PHASE I AND II
Brown Cherryl, Desbiens 5, Paul AE. Canadian AIDS Society Ottawa, Canada
Issue:The National Women and HIV Project endorses the fundamental goal of empowering women living with HIV to take control over decisions that affect their lives.
Project: Recognizing that women are one of the fastest growing groups of people infected
and affected by HIV, the Canadian AIDS Society received funding from the AIDS
Community Action Program under the National AIDS Strategy for a National Women and
HIV Project.This project is presently in the second of a proposed three phase plan to
address issues facing women living with HIV across Canada. Phase One was recently cornpleted, and accomplished the following goals: * built a strong coalition of over 300 HIV positive women and their supporters from across Canada who engaged in community consultation to prioritize issues requiring action and to develop strategies for change; produced
various communication tools including a national newsletter, two inventories and a discussion paper; * ensured that the voice of positive women is heard when decisions affecting
their lives are being made; * provided opportunities for HIV positive women to learn from
each other through avenues such as the National Skills Building Workshop.
In PhaseTwo, HIV positive women are maintaining their leadership role.The goal is to continue to build on these accomplishments and to put the priority issues identified in Phase
One into action through coordinated health promotion initiatives.These initiatives have a
high capacity to be self-sustaining and subsequently integrated into the communityThe presentation will focus on the process of Phase One and the implementation of resulting initiatives in Phase Two.
Lessons Learned: Connecting HIV positive women with one another is an important way
to break their isolation; HIV positive women should make the decisions that affect their
lives; and teamwork is necessary in facing the individual and social challenges experienced
by women.
Amrita Ellen Paul, Canadian AIDS Society 400 - 100 Sparks St. Ottawa (Canada) K I P 5B7
[phone]/[phone]
Tu.D.484
IN SICKNESS AND IN HEALTH AIDS ACTIVISM ILLNESS,AND THE POLITICS
OF IDENTITY
Orsini, Michael.
Issue: AIDS activism, as viewed through the filter of identity politics, poses unique challenges
to the future of activists' efforts to empower PWAs, and, ultimately end the AIDS crisis.
Project: The AIDS discourse is steeped in questions of identity but, curiously rarely
expressed as such. From the furor over mandatory HIV testing to controversies surrounding
the funding of AIDS prevention programs, notions of identity inform much of the debate
over how to formulate adequate public-health responses to AIDS. Implicit in much of this
discussion is a belief that to be labelled HIV positive is somehow worse than the disease
itself There is, however, a remarkable corollary to this: the collective identity of people with
AIDS has helped to spawn the modern-day AIDS lobby which consistently refuses to crumble under the weight of an omniscient AIDS Establishment. Addressing several issues, including the role of civil disobedience in political action, sexual identity and the emergence of the
AIDS Coalition to Unleash Power (ACT UP), a direct-action group formed in NewYork City
this paper attempts to place this paradox within the larger context of identity formation and
demonstrate how identity politics has both helped and harmed the fight against AIDS.
Results: AIDS activism for the PWA can be both punishing and liberating. In the case of gay
men, their involvement in AIDS activism tends to reinforce notions of gay men as inherently
diseased, and has exacted a heavy toll on their (gay men's) identity More important, however their efforts to challenge commonly held assumptions of the patient-doctor relationship,
have contributed to the creation of a new paradigm in health care, of the PWA movement
as the model of a medical patient base which is increasingly well-informed and articulate.
Lessons Learned: AIDS activists must reassess the role identity politics plays in the "game"
of lobbying, particularly in the light of the changing face of AIDS, and the underrepresentation in activist ranks of other affected groups.
Michael Orsini, 63 19 Beaulieu St., Montreal,Quebec. H4E.3E9 Canada Tel:[phone]
email: [email protected]
Tu.D.485
FROM MARGIN TO CENTRE:TOWARDS AN ADVOCACY AGENDA FOR AIDS
AFFECTED CHILDREN AND YOUTH
Costigan, Aine,* Waring, B.* *The Interagency Coalition on AIDS and Development
(ICAD), Ottawa, Ontario, Canada
Issue: Globally, AIDS affected children and youth are marginalized from AIDS and development activist, policy and programme work. Currently AIDS affected children and youth do
not have a voice in a variety of fora and receive only a fraction of the support they need.
Project:This paper gives consideration to how to move the issue of AIDS affected children
and youth forward among international and domestic governmental and non-governmental
organizations.A necessary first step in advancing the question of AIDS affected children and
youth is determining the barriers that prevent their needs being addressed by key decisionmakers in both the North and the South.
Results:The barriers to be overcome in order to move AIDS affected children and youth
f6om margin to centre include: the limits of identity politics; the domination of the international AIDS agenda by the North; the fear of"guilty" versus "innocent" victim thinking; the
fear of the heterosexualization of the AIDS agenda; the extent to which the North is influenced by its own fertility patterns; the domination of AIDS work by scientific and medical
paradigms (treatment of STDs, promotion of condoms); the perception among Northernbased development organizations that child/youth focussed HIV/AIDS work belongs only in
the domain of child-based organizations; and the failure of the signatories of the Paris AIDS
Summit to implement the Paris AIDS Summit initiatives.
Lessons Learned: Identifying the barriers that prevent the needs of AIDS affected children
and youth from being addressed in both the North and the South is a necessary first step
in developing an advocacy agenda for AIDS affected children and youth in the world.,O
O
Q)
u
ca
O
L;
0
()
no
O
V
a)
X
0
C)
0
mO
c
na
x
262