Advocacy and HIVJoe Ramirez-ForcierManaging DirectorEmployment ServicesPositive Resource Center415-777-0333
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.
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.
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.
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.
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 Banduras 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.
Factors affecting self-efficacy Experience - "Mastery experience" is the most important factor in deciding a persons self-efficacy. Modeling - “If they can do it, I can do it as well.” Social Persuasions - Social persuasions relate to encouragements/discouragements.
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).
SF Community Examples of Activismand 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 Informs integrated approach to treatment education and advocacy.
SF Community Examples of Activismand 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.
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.
Information and Networks that SupportSelf-Advocacy Friend Internet Telephone Hotline Community Based Organization Library Media Support Group Family Member Health Care Worker