1. Advocacy and HIV
Joe Ramirez-Forcier
Managing Director
Employment Services
Positive Resource Center
415-777-0333

2. Self-Advocacy
 Its roots lie in the civil rights movement
for people with disabilities.
 Refers to people with disabilities taking
control of their own lives including
decision making for their own care in the
medical system.
 The self-advocacy movement is about
people with disabilities speaking up for
themselves.

3. Self-Advocacy in Action
 Assertiveness
 Those who feel free to express their
feelings, thoughts, and desires.
 Those who know their rights.
 Those who have control over their
anger. It does not mean that they
repress this feeling. It means that they
control it for a moment and then talk
about it later in a reasonable manner.

4. Methods of Self-Assertiveness
 Repeating your requests when coming
upon resistance to something you should
be entitled to.
 Finding some limited truth to agree with
when encountering an opposing persons
view.
 “I” statements.
 Confidence around Self-Assertiveness can
lie in a persons past history of self-
efficacy.

5. The Roots of Self-Efficacy
 In the medical and psychiatric areas, emphasis is
placed on self-advocacy or self-empowerment
(patient empowerment). This emphasis started in
the psychiatric field during the 1970s, not only to
advocate for needed changes in the delivery of
services but to encourage patients to take a more
active role in their own care.
 Similar changes occurred in the medical area,
especially in the 1980s with the beginnings of
hospice and home care / home health care
industries. Patients since the 1980s have been
encouraged to become participants in their own
care and to become knowledgeable consumers of
the services of medical care.

6. What is Self-Efficacy?
 Albert Bandura Phd. has defined self-efficacy as
our belief in our ability to succeed in specific
situations. Your sense of self-efficacy can play a
major role in how you approach goals, tasks, and
challenges. The concept of self-efficacy lies at the
center Bandura’s theory, which emphasizes the
role of observational learning and social
experience in the development of personality.
According to Bandura's theory, people with high
self-efficacy - that is, those who believe they can
perform well - are more likely to view difficult
tasks as something to be mastered rather than
something to be avoided.

7. Factors affecting self-efficacy
 Experience - "Mastery experience"
is the most important factor in
deciding a person's self-efficacy.
 Modeling - “If they can do it, I can
do it as well.”
 Social Persuasions - Social
persuasions relate to
encouragements/discouragements.

8. Social Activism, Self-advocacy,
and Coping with HIV illness
 The nature of collective action in the
AIDS activist movement - ACT UP was
formed in 1987 in New York City in response to
criticism of federal agencies (e.g., the Food and
Drug Administration) and private pharmaceutical
companies responsible for AIDS research (J.
Gamson,1989). The organization quickly called
attention to the perceived inaction and
ineffectiveness of efforts for managing the crisis
(Brashers, Haas, et al.,2000) and focused on
‘knowledge empowerment’ for people living with
HIV or AIDS (Epstein, 1996, pp. 216–234).

9. SF Community Examples of Activism
and Self-advocacy
 Project Inform (http://www.projectinform.org/)
- In 1985, a group of concerned community
members joined together to start a short-term
"project" at a time when reliable information
about HIV/AIDS and its treatment was nearly
impossible to obtain. Since then Project Inform
has worked to accelerate and facilitate advances
in treatment, recognizing that therapeutic
breakthroughs are only effective if people living
with HIV have access to them. The hope this
philosophy inspires is the core of Project Inform's
integrated approach to treatment education and
advocacy.

10. SF Community Examples of Activism
and Self-advocacy
 Project Open Hand (http://www.openhand.org/
) - In 1985 in San Francisco, Ruth Brinker, a
retired grandmother, watched a dear friend die of
AIDS. She realized that for many people with
HIV/AIDS, malnutrition was causing death as
much as the illness itself. At that time, no social
service agency was providing meals to those too
weak from AIDS or too impoverished to feed
themselves. Using her experience as a manager
with another food program, Ruth enlisted the help
of her friends, secured a basement kitchen at a
local church and began to serve meals to seven
clients, Project Open Hand was born.

11. The Role of Information and
Social Networks.
 Access to information and social
networks allows support for people to
embark on greater self-advocacy, self-
assertiveness and self-efficacy.

12. Information and Networks that Support
Self-Advocacy
 Friend
 Internet
 Telephone Hotline
 Community Based Organization
 Library
 Media
 Support Group
 Family Member
 Health Care Worker