Self-Advocacy and HIV

Dee YavorEmployment Specialist Employment ServicesPositive Resource Center415-777-0333www.positiveresource.org

What is Self-Advocacy?

Self-Advocacy is: Learning how to speak up for yourself Making your own decisions about your own life Learning how to get information Finding out who will support you in your journey Knowing your rights and responsibilities Problem solving Reaching out to others when you need help and

friendship

Self-Advocacy Movement

The self-advocacy movement began in the broader civil rights movements of the 1960s and 1970s.

The self advocacy movement focused on supplying people with disabilities with the tools and experience to take greater control over their own lives.

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

emotions. It does not mean that they repress their feelings. It means that they control it for a moment and then talk about it later in a reasonable manner.

What is Self-Efficacy?

Self-efficacy is the belief in your ability to complete tasks and reach goals (high vs. low).

The concept of self-efficacy lies at the center of Albert Bandura’s theory of socialization, which emphasizes the role of observational learning and social experience in the development of personality.

Factors affecting self-Advocacy

Experience – “Mastery Experience” - Having done it before.

Modeling - “If they can do it, I can do it.”

Social Persuasions – Encouragement & Discouragement

At the Doctor’s Office or Clinic

Write down questions before going to a medical appointment.

If you don’t understand something, or if you would like more information, speak up!

Ask for information in writing if needed. Bring a friend with you to the

appointment. (Modeling) Expect Resistance

Encountering Resistance Expert Authority: I’m the Doctor!

Dismissive: Its really not that important.

Deflection: I don’t think we should review this matter right now.

Shaming: So you’ve been using the Internet, don’t believe everything you read.

5 P’s of Self Advocacy

Patient Bill of RightsPatient SafetyPreparedPositivePersistent

5 P’s of Self Advocacy

Patent Bill of Rights: I have the right to make informed decisions about my healthcare, to refuse or request services.

Patient Safety: Is this medication, procedure, test, safe for me??

Prepared: I can articulate my concern or indentify a problem and discuss solutions.

5 P’s of Self Advocacy ( con’t)

Positive: I know you care about my well being and safety, how can we solve this together?

Persistent: Can I check back with you to review my meds in 2 weeks.

The Role of Information and Social Networks.

Access to information and social networks allows support for people to embark on greater self-advocacy and increase their since of self-efficacy.

Who and What are your supports?

Information and Networks that Support Self-Advocacy

Friend Internet

Telephone Hotline Community Based Organization

Library Media

Support Group Family Member

Health Care Worker

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.

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.

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.

Resources www.projectinform.org www.Thebody.com www.cdc.gov www.aidsmeds.com www.cdph.ca.gov/programs/AIDS