...See p. 8)

"I feel so isolated," woman from the Caribbean shared. "I know there are many women who are infected, just like me, but they are in hiding." Several women agreed that just getting together to share experiences is a challenge.

Others who have people to talk to felt ready to take it to the next level. How could they educate their loved ones, their community, or the public at large? How could they advocate for groups that are invisible or marginalized (older women, prisoners, rural women)? How could they plug into campaigns for access to treatment, research on women, or prevention methods that women can control?

This issue of WORLD is intended to answer some of these questions. We will tell you how and where to find information about getting involved. And, we will share stories from women who took a chance, despite their lack of experience or fear of failure, and found that one person really can make a difference.

1. Volunteer

by Rebecca Denison

Volunteering is a great way to learn while helping others. Many AIDS organizations need help answering phones, stuffing envelopes, providing emotional support or rides to clients, organizing events, raising money, doing outreach, tabling at events, or hunting down information.

If you have a skill, let folks know. Sometimes organizations need a computer whiz, or event organizer. But know that most are struggling to keep up and may need people who are very self-directed or willing to do routine tasks. While stuffing envelopes may not seem exciting, you can meet neat people, learn about HIV, and get support, while helping HIV+ people and their loved ones gain access to lifesaving information.

Volunteering can also introduce you to a variety of activities so you can see which one is the best "fit" for your talents and interests.

2. Ask questions

by Hulda Brown

I am a 58 year old African-American woman living with HIV. At the time of my diagnosis, 11 years ago, AIDS was considered to be a gay, white, male disease. HIV studies were mostly done on men ages 28 to 44. What about me?

Well, what about me? I could wait around for "somebody" to do or say something, or I could get involved. I realized that no one was going to come to me to volunteer information. If I wanted answers I had to ask questions. The more I asked, the more I learned.

Everybody knows something that someone else does not know. If we share our knowledge, think of how much wiser we will be. I know that there will be people that judge our speaking out, but I get a great satisfaction in knowing that I have helped someone understand a little bit better.

* The August 2001 WORLD has 2 pages of AIDS hotlines, newsletters, and organizations. (Call or e-mail us at rdenison@womenhiv.org. We'd be happy to mail you the list.)

3. Take a first step

Following the advocacy workshop, we heard back from Sandra (above). Here's what she told us...

Dear WORLD, I wanted to write to say thank you from the bottom of my heart. The retreat has changed me forever. I feel stronger than ever and I am taking steps to start a group.

When I got home I made some cards, sharing that I was an HIV+ woman looking for other HIV+ women to share friendship, fears, and information about managing drugs and side effects. I left my phone number for people to call me, day or night. Then I gave them to my doctor to give to others.

My doctor was incredibly helpful. He not only gave them to patients but also to other providers who then referred their patients.

Since then I've been getting phone calls from women in my area. Some aren't ready to meet, but some are. I have four women so far. Ya! For now we're meeting in coffee shops, but we're looking for an ongoing place.

I can't wait for the next retreat in September (see p. 8). We all want to go!

-- Sandra Kinerson, of Turlock, CA

Congratulations Sandra! Four women is great! It took just 5 in Uganda to start NACWOLA (the National Community of Women Living with HIV/AIDS) in 1992; today they have 50.000 members.

4. Learn from others

by Barbara Garcia

I got involved by chance.

It was 1990, and the International AIDS Conference was here in San Francisco. I was given a free ticket by a nurse (Catherine Lyons). At a forum on needle exchange, I met a couple of needle exchange volunteers. They said I would be welcome to volunteer too. I felt very lucky as I thought needle exchange was cool. Through that connection I met others who also encouraged me to get involved.

In the early 90's, there were not many women who were "out" about their HIV, so I found myself in great demand. This was nice for my ego but had a down side. I got over extended and did some talks for which I was not very well prepared. I...

NOTE: All illustrations and photos have been removed from this article.



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