A Guide for HIV/AIDS Community Advocates

collected by Julie Davids for Project TEACH, with help from Charles Nelson, Kiyoshi Kuromiya, and Jane Shull



Becoming an Advocate

1. It is important that you are doing this: Serving as a community representative is hard work. Other people have more experience than you, and may know more about the topic or the unspoken rules of meetings and power. But you are an expert about your life and your community, and you can learn everything else. It can be scary to speak up, especially the first time you disagree with a powerful person. Remember that you are doing the right thing and speaking the truth, and you need to be heard. No one was born knowing how to do this, and it will get easier. It is a challenge and you will have to take risks, but it will also teach you about yourself and help people have longer and better lives.

2. Pick an issue or an organization to focus on — and follow it wherever it goes. No one can know everything, or do everything. Whether you are interested in tuberculosis, or TPAC, or teenagers with HIV, read all you can or ask people who know the most about the issues. Then start going to meetings where decisions are made that affect peoples’ lives. You will become the expert and feel more comfortable speaking up.

3. Don’t get isolated: It is usually a good idea to avoid being the one person living with HIV (or vaccine volunteer) on a committee or panel. Demand that there are at least two, and ask to help select the other person or people — then meet ahead of time and between meetings to plan strategy. Get a list of who else is on the committee, before you go to a meeting, and ask around about the other people. If you hear good things about someone, call up and introduce yourself and ask any questions you may have. Don’t judge people by their title or position, but by their reputation and your experiences with them. Some researchers or bureaucrats will give you good information and explain things clearly. Some ‘community members’ may not be trustworthy or share your beliefs and goals.

An affinity group is a group of people who work together on a certain issue. You could form an affinity group to support you on this committee — even if other people are not on this committee — even if other people are not on the committee, they may have access to information and can help you figure out what to do. A support person can be someone who will really stick with you, help you keep track of the process and your role in it, and let you complain. It should be someone you like and trust, and can be someone who has been in your position or a similar situation.

Make contacts, and use them: Once you have found good people on your committee, or in the outside world who know about the issues, talk to them often. If you have a question about a term or idea that comes up in a meeting or on a conference call, and you do not feel comfortable asking about it right away, write it down and ask it later.

4. Do your homework: If you are sent information before a meeting, read it or find someone to help you go through it. Write down any comments or questions or anything that seems strange. If you need more background information on the topic, call an expert or ask someone who has been in your position before. Sometimes you will be sent too much information, and your contacts can help you decide what is important.

Other homework includes thinking about what is likely to happen at the meetings. What might you have to speak up about? What will you say? How will others respond? What are arguments against your position, and how will you take them on? Discuss this with your contacts and others who are working on the issues, or who have worked with the people on your committee before!

5. Don’t try to do everything. You can not be on every committee and board and do a good job. Share the load with your peers – – if they are knew to this, make sure they fight for training and support them as they learn and grow. Know your limits, and do not spread yourself too thin!

Sitting at the Table

1. Remember the people who aren’t in the room: you are there to represent your community, not to impress the other people at the table. You must be clear about what your community needs and wants, and report back information to people who are not there. If you are sitting on a scientific committee designing research, you don’t have to be a scientist — you need to think about and talk about how their research will affect your community. Don’t be afraid to go back and ask your community what they think.

2. Set goals to focus your participation. your homework is to know the issue, and figure out how it affects you and your community. What can this panel or committee do about this issue? Your goals must be clear, well-thought out, and possible for this group of individuals to do at this time. You can have goals for each meeting, and overall goals for the committee’s work. What goals must be met, and what goals are you willing to compromise in order to win the most important things? Discuss with your contacts and supporters. If you learn more or situations change, look again at your goals and change them if necessary.

3. Be truly present. You need to be there physically, mentally, and emotionally. The first key to this is showing up. Go to all the meetings. If they do not meet at times you can attend, demand that the times change, or find someone else to take your place. If they communicate through conference calls, be on all the calls, or you may miss important information.

Listen to everything. It is not helpful for you to demand an answer to a question that was already answered 10 minutes ago. Try your best to keep track of the conversation. If you ask a question, you must listen to the answer — do not assume you know what they are going to say. It is very easy to get distracted, especially on conference calls. Try to notice when you are not listening, and learn to concentrate on what is going on. Bring a tape recorder if you have trouble remembering the details or taking notes, and review later.

Stay awake. If you find yourself getting sleepy, stand up or walk around if possible. Go to the bathroom and splash cold water on your face. Don’t load up on coffee and sweets — it can just lead to a crash. Snacks like nuts and fruit can give you a better energy boost.

Focus on what you do understand, not what you don’t yet understand. It is easy to become discouraged, but remember that you have support and can learn. Picture ideas in your head at first, rather than trying to write down details, especially with scientific and treatment issues.

4. Make all your comments and get your questions answered, sooner or later. You always have the right to ask questions. If you do not understand something, and no one is helping you, interrupt the meeting and demand an explanation. IF you have a comment to make, do not let the conversation or meeting end until that comment is made.

If you ask a question, and feel that it was not answered all the way, point that out. If you still feel like you are getting the run-around, you have to make a decision — should you continue to interrupt the meeting, or will you give upfor now and get your answer later from one of your contacts? Either decision is the right one at different times — it will become easier to tell with experience.

If you are not sure of how to say something important or sensitive during a meeting, make yourself a note. Then work with your contacts and supporters afterwards to write a letter to all the committee members, stating your position, and fax it to them or bring to the next meeting.

Don’t be afraid of disagreements, even with your contacts and allies: a good working relationship can include arguments, so people know where you stand and that they can’t walk over you. Do stay open and honest without making personal attacks.

Sometimes you may have to pick your battles, and let things go if you can get an answer outside the meeting, or come back with a stronger suggestion or propsal next time. Remember, you are there to meet your goals, in order to help your community. If you call someone a “murderer” the first time you have a minor disagreement or because they say something dumb, they may never listen to anything you say again. Some people will say ignorant or offensive things to distract you from the real issues — don’t fall for it.

Avoid making up facts and figures: You may get caught. If you are pretty sure, say “I think that…” or “I believe that…”, and hope that someone else in the room can back you up. Or write a note to a contact near-by, asking if they know and can make the point. Sometimes you may need to bluff to bring out an important issue or make a point. You can act like you know the details without saying any. Use words like “approximately,” “about,” or “roughly” to describe your best guess, as in “About half the people dropped out of the study because of side effects. Obviously there is a problem here.”

5. Get in on the details. Most of your goals may be for big issues and decisions. But smaller things can make a large difference, too. Sometimes the people who write the final wording of a policy or decision have the most power. Do not give your okay for a general statement and go home — help write it, or demand to see a copy before it is made final or sent out!

For example: If you are a representative for clinical trials, it is very important to look at the details of the study. Will people have to come in every week for a blood collection? How will they get there? Do they really need all that blood?

If you have questions or comments on this document, please contact julie Davids at Project TEACH: jdavids@critpath.org

Published: May 31, 2002
Last edited: January 17, 2011