September #116 : Forever a Fighter - by Lucile Scott

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Table of Contents

Charles King Has a Dream

Cross-Country Crusaders

Quoth the Raven

A Trip to Bountiful

Doctor's Diary - September 2005

Combo Vision

Hearts and Chocolate

The New HIV Bouncers

Foreign Agents

Positively Fit

Fitness 101

Weep No More

Ask the Sexpert - September 2005

Antibody Snatcher

The DL Deal

Legal Eye - September 2005

Medicaid Watch

Savings and Moan

Freedom to Worship

Spirit Guide

Teenage Wasteland

Shooting Gallery

HIV Hot Spots for Injections

Buzz Kill

Run for the Border

Mentors - September 2005

I Say a Little Prayer

Easy Come, Easy Go

Forever a Fighter

Founder's Letter - September 2005

Mailbox - September 2005

Most Popular Lessons

The HIV Life Cycle


Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV

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September 2005

Forever a Fighter

by Lucile Scott

An Activist's Tricks To Make Hope Stick At Home After C2EA

Jose De Marco
50, Philadelphia
Diagnosed 1991

I was introduced to activism in 1991, when my positive partner of 15 years got really sick and wanted us to move back to his hometown, Akron, Ohio. AIDS was new there. People were scared, and there were few services. As two gay men of color, we faced plenty of homophobia and racism. We had to fight for everything. I went to the Public Assistance Center, fought for his Medicaid card and left with it that day. I moved to Philadelphia the day after his funeral in 1994. I volunteered at an AIDS service organization—but it wasn’t enough. I was too angry. People couldn’t access services or meds. So I got involved with ACT UP Philadelphia. It was like, “Wow. I have power.” I’ve been there nine years and have worked on many campaigns, like Medicaid and anonymous testing. I’m still angry. The government and pharma are still screwing people. Changing that doesn’t come from ASOs or politicians—it comes from PWAs.

6 steps to do-it-yourself action

1. Get a Group
“At ACT UP, I realized a handful of people can change the epidemic. Start by meeting friends weekly for coffee to discuss a community AIDS issue. Then, learn everything you can about it. Set up meetings to educate people at AIDS organizations and recruit people who can do key jobs—like grant writing.  And once you have a good e-mail list, send action information and keep people interacting.”
See how ACT UP starts a new chapter at

2. Get A Plan
“Meet with the group and discuss the most effective strategies to achieve your goal. We do everything from lobbying to rowdy demonstrations to interrupting a candidate during a speech. First, find people affected by the issue. We go to homeless shelters and drug-recovery centers and invite people to demos or teach them to lobby. We say, ‘Hey, poor people of color have a huge voting block and we know how to use it.’”
For instructions on direct action, check out the Midwest Academy,

3. Get Funds
“We rely on grants and fundraising—we don’t take anything from the government or pharma.Tons of folks want to fund social change—find out which are right for you. We also sell dinners, make  T-shirts, go to casinos and auction ourselves off at Gay Pride.”
Learn about grants from the Foundation Center,

4. Get Press
“We build relationships with the area’s health and political reporters. I just call them and chat about an article they wrote. We call every contact two or three times about a big event. Getting press is one of ACT UP’s main tools. Recently, we forced the governor to meet with us by presenting him with a coffin and swarming him with press as he entered a fundraiser.”
Get PR tips from Press Release Writing,

5. Get Along
“Everyone in ACT UP has strong opinions. But we make decisions by consensus. You have to be friendly and encourage people to speak openly. I don’t always agree, but sometimes I’ll stand aside. People get angry and stay away for a week or two—but they always come back.”
For more ideas to keep your org going, visit

6. Get Stamina
“While it’s hard to get bored, there is burnout. When my mother had Alzheimer’s, I was attending meetings, doing activism and caring for her. I got irritable and took on tasks I couldn’t complete, so I took time off. But I’ve never thought of quitting. The group is like my family—my dysfunctional family. And I still get teary-eyed when I go to demos.”
Contact activists through

Want to ask Joe about activism? Meet him at POZ Mentors at

T-shirt Tirade

Promote your cause by wearing it. ACT UP made its mark with famously loud logos, which fit the rowdy ’80s and early ’90s—to a T. Snag your own at an ACT UP demo and drop by for many ideas to accessorize your convictions.

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