East New York Viral Load Leaders Project Session 6 Stigma and Disclosure Overview Participants explore HIV stigma from the perspective of those living with HIV and those who are not. They will examine common perceptions, beliefs, myths, etc., about HIV and how those make people living with HIV feel. They will discuss issues of disclosure, which are related, in part to HIV stigma, and learn how to handle disclosure. Participants will identify ways to handle stigma, also discussing stigma in general (other than that connected to HIV). Objectives Participants will be able to: Define HIV stigma Describe the range of HIV stigma Explain the impact of stigma on those living with and without HIV Express the complexity of HIV disclosure and its connection to stigma Identify strategies for combatting stigma and negotiating disclosure

We Will Talk About: What HIV stigma is and where it comes from What disclosure involves and how stigma affects it How to handle disclosure Ways to address HIV stigma

“Sometimes, I just want to be myself without HIV “Sometimes, I just want to be myself without HIV. Before I was open, but nowadays, I’m closed. I’m closing my ‘doors and windows.’” “I don’t turn around and tell them I am HIV positive because I know what their reaction would be.” “I live with HIV. It feels like hiding something from the rest of the world, not being able to share a piece of your life and who I am, even with my family.” “I used to think that people with HIV were dirty and deserved what they got. I was devastated when I found out that I had HIV. I became one of ‘those’ people.” Warm up Click through each quote. Reach each aloud as the participants read silently. Have participants to think about the quotes. Ask: Have you had these thoughts? Or heard similar things? Participants will likely mention how others view HIV and people living with HIV. Some might even say stigma. Affirm responses. Highlight the term “stigma.” Ask what stigma means (a general definition). Tell the group they will explore the feelings and perceptions associated with HIV stigma during the session.

Where does HIV stigma come from? HIV Stigma: What It Is HIV-related stigma refers to negative beliefs, feelings and attitudes towards people living with HIV, their families and people who work with them. Where does HIV stigma come from? II. What is Stigma Materials; Newsprint, markers Ask participants to build on the quotes and their earlier discussion to define HIV-related stigma. Click for definition of HIV stigma. Click for “Stigma Cycle” image. Give participants some time to look at the cycle. It’s basically a conversation starter. Click for the discussion question. Have participants briefly discuss the question. Record their contributions. Affirm responses. Note that many of the contributions highlight “myths” about HIV. Additional talking points/myths (discuss those that participants did not discuss): Connecting HIV with behaviors, such as sex outside of marriage, multiple sex partners, injection drug use, gay sex A belief that acquiring HIV is the person’s own fault People living with HIV sometimes being members of other marginalized groups (e.g. African, Caribbean and Black people, men who have sex with men or MSM, people who inject drugs) Fear of HIV and its transmission; fear because it has no cure Ignorance about how HIV is transmitted and of HIV infection overall Homophobia Distribute the “HIV Myths” handout.

Disclosure III. Disclosure Mention that among the issues participants discussed about HIV stigma was disclosure. Invite participants to share what disclosure means to them, and, if comfortable, to give examples of experiences they have had with disclosure. If all of the responses are negative, ask for positive examples experiences with disclosure. Continue the discussion using the following prompts: Note that people are often nervous about telling others that they have HIV What are the differences between positive and negative disclosure experiences? What kind of relationship did the HIV positive person have with the person they disclosed their status to? Did that seem to matter in the examples you shared? Did the people who had negative responses have an understanding of HIV before the disclosure? Explain. Did they only believe in myths and stereotypes about HIV and people with HIV? How do you know?

What are some good ways to handle disclosure? Let’s Discuss What are some good ways to handle disclosure? Materials: Newsprint, markers, masking or painter’s tape, “Disclosure Tips” handout Invite participants to share tips for handling the difficult disclosure discussion. Record their contributions on newsprint. Distribute the “Disclosure Tips” handout. If there is time, have participants look at the general disclosure tips in the article and add other. .

How do we handle HIV stigma? Standing Up to Stigma Challenge attitudes, beliefs, and behaviors Avoid using language that stigmatizes others Talk about your experiences Understand your rights Know the facts about HIV Support each other How do we handle HIV stigma? IV. Standing up to Stigma Materials: Newsprint, markers, masking or painter’s tape Click for the discussion question. Ask for some strategies. Click to highlight basic strategies that can always be used, in addition to the ones participants just named. Discuss how we, in our everyday lives, can challenge stigma directed toward others, even stigma that is not connected to HIV. Ask: How can this help us reduce stigma in general and allow for better understanding? Ask participants if they are aware of their rights as people living with HIV. Explain that there are laws that protect them. Distribute the “HIV/AIDS Discrimination” handout. If there is time, quickly review with the group. If not, encourage participants to read it on their own. Finish the session on a high note, highlighting how participating in this session is a major step toward ending stigma and taking positive steps for themselves (and for fighting stigma in general).

Questions & Answers Respond to questions participants have stigma and disclosure.