In a mask with sunken eyes and shrunken cheeks, the HIV-Lipo Warrior faced Montreal AIDS Walkers last September with the lowdown on lipodystrophy, the body-shape changes that plague HIVers. Who was that masked man? Martin Mailloux, 46, who developed lipoatrophy, or facial wasting, two years ago. The 10-year HIVer joined Lipo-Action (firstname.lastname@example.org) to demand more lipo research—and, he says, frank talk about “its severe consequences for our health, physical integrity and quality of life.”
The year-old group has lobbied politicians but prefers street theater—“a creative, punchy approach,” Mailloux says. Self-described HIV Mutant activists leafleted the AIDS Walk, while Dr. Blindpills, Dr. Motus (French for shut up) and Dr. Bouché (blocked ears) offered comic critique.
“Doctors are afraid to talk about lipo because people might quit their meds,” Mailloux says. But nothing breaks the silence like a good performance: After seeing Lipo-Action outside one AIDS confab, Canadian researcher Mark Wainberg, MD, delivered its message to scientists inside.
New-Fill shots restored Mailloux’s cheeks in 2003, but he remembers that sinking feeling. “[HIVers with lipo] deal with discrimination, even in the gay community,” he says. “But the eyes of participants after a skit—that’s the rising of dignity again.”
Mailloux’s tips for facing off against lipo:
- Get creative: Action (plus play) kills depression. Challenge institutional resistance and your own rage and shame—don’t wait for someone to do it for you.
- Take the stage: Create a circus or theater that represents your group’s experiences and communicates your needs.
- Dress up: Use cheap board, photocopies, dollar-store pillboxes, balloons for paunch and buffalo hump—and imagination.