The thought of being an AIDS advocate can be intimidating. You know that you want to do something, but you may not know what to do or where to start. It can help to realize that you’re already an advocate just about every day, usually without realizing it.

Advocacy means speaking up in order to make positive change happen. Advocacy takes on as many forms as the people who do it and the issues involved.

You might not think of yourself as an advocate, but, in many ways, you already are. Every time that you speak up for yourself, you’re an advocate. If the grocery store overcharges you and you call them on it, you’re an advocate. If you contact your credit card company about something that shows up on your bill that you didn’t buy, you’re an advocate. And if someone steps ahead of you in line and you tell him or her that the line starts “back there,” you’re an advocate. These are just a few examples of self-advocacy.

You may have dealt with more challenging self-advocacy issues—poor housing, discrimination at work, sexism, racism, and homophobia. Every time that you speak up for yourself, demand that people treat you with respect, or insist that you have a right to life’s necessities, you’re an advocate.

Self-advocacy is a way of taking as much control of your life as possible. Advocating for yourself regularly can help you build self-confidence and develop a more positive sense of yourself.

Much of your self-advocacy as an HIV+ person probably revolves around your health and the healthcare you receive. To get the best care possible, you often need to advocate for yourself. The following lists some of the ways that you can advocate for yourself with your healthcare team (links to more tips are available in the resource modules to the right):

• Know as much as you can about HIV, your health, and your treatment options.
• Make a list of questions you have for your healthcare provider before your appointment.
• Ask questions about the medications you’re taking or new medications that you’ve heard about.
• Stop your provider anytime you don't understand something he or she says and ask for a clearer explanation.
• Take notes during your visit so that you’ll remember the important points when you get home.
• Discuss health issues that are on your mind with your provider, even if they don’t seem like a big deal.
• Ask for and keep copies of all of your medical records such as lab results.
• Get a second opinion about any important health issue.

Individual advocacy is supporting someone when they need help or trying to find a solution when someone has a problem. You may already advocate for other people in your daily life but don’t think of advocacy as the word to describe your actions. For example, you may be the one who makes sure your family members (partners, children, or parents) get the best healthcare, benefits, and other necessary services. This is an important kind of advocacy.

Opportunities for individual advocacy come up in daily life all the time. Someone in your support group might be having trouble understanding HIV treatment information material. You could be just the person to go through the materials with him or her. A friend or colleague might need help with housing; you might be able to find a resource that will help. Sometimes you may even try to help a person you don’t know.

Isn’t it great when someone steps in to help you advocate for yourself? Advocating alone is tough. But there’s power in numbers. When more than one voice speaks up about an issue, things are much more likely to be put right.

Community advocacy is a larger version of the individual advocacy that you may already practice in your daily life. But community advocacy takes place in public. Before getting involved, decide how comfortable you are about disclosing your own HIV status. This is a personal decision that requires careful thought and discussion with people close to you. Whether you decide to go public with your status or keep it private, you can still be a community advocate.

There are many things you can do. For example, you could speak at a church or other organization about the needs of people with HIV or HIV prevention. You could get involved with local HIV awareness and fundraising events by participating in an AIDS walk or other AIDS event. You could join a patient advisory group at an AIDS research site, an AIDS service organization, or an HIV planning council. For more information about joining advocacy groups in the community, read our info sheet, ‘A Place at the Table.’

You could get involved with HIV treatment advocacy or political issues. Many groups are involved in these areas that welcome new members and volunteers. You might be asked to call, visit, or write letters to government officials. Some groups provide conferences, trainings, and workshops to help people learn how to become advocates.

Or, you may choose to spend a few hours a week volunteering at your local AIDS service organization doing office work or being a buddy to an HIV+ person. If the organization provides essential services to HIV+ people, your volunteer work is a kind of community advocacy. Very often, you’ll find that the support you offer will come back to help you in the future.

Hopefully, this information sheet has made the idea of being an AIDS advocate a little less intimidating. Being an advocate doesn’t necessarily mean speaking to the media, meeting with politicians, or participating in rallies and demonstrations. Advocacy can be as personal or as public as you choose.

There are many ways to be an advocate. Some of them are big and require lots of time and commitment. But, as discussed, you’re already a self-advocate just about every day. And that may be plenty. If you want to get involved in community advocacy, take it slow. There are lots of opportunities out there. Try contacting your local AIDS service agency or some of the resources listed on this sheet for ideas about things you can do.

1		HRSA Care ACTION. (2002). Positive partners: consumer involvement in HIV care. Retrieved October 2005 from http://hab.hrsa.gov/publications/september2002.htm
2		Washington Protection and Advocacy System. (2005). Self-advocacy: knowing your rights, and standing up for them. Retrieved October 2005 from http://www.wpas-rights.org/self_advocacy.htm