The death of Elie Wiesel earlier this month spurred my thoughts on the issue of silence. A Romanian-born American Jewish writer, professor, political activist, Nobel Laureate and Holocaust survivor, Wiesel was determined that the world not forget the Holocaust.
I have been involved in the HIV epidemic since July 1981, when a friend called and asked if I had seen the article in that day’s issue of the New York Times, “Rare Cancer Seen in 41 Homosexuals.” As a healthcare provider with training in medical research, a brand-new virus captivated me. The science of a retrovirus fascinated me until I began seeing what this virus did to people, to friends. My fascination was tempered by anger and frustration with a society that branded HIV as a moral issue rather than a public health one.
In March 1983, the federal Centers for Disease Control and Prevention (CDC) issued a report on current trends in the emerging AIDS epidemic noting that most cases to date had been reported among gay men, IV drug users, and Haitians, with 11 recent cases reported among hemophiliacs. Soon enough, responders to the epidemic in the medical and public health spheres began referring to AIDS as the “4H” disease, because it affected homosexuals, heroin users, hemophiliacs, and Haitians. This characterization conflated risk groups with risk behaviors and heightened the stigmatization of AIDS even before its association with a then-unknown virus (HIV) was confirmed.
A social activist since my teenage years in the sixties, I needed to do more than read newspaper headlines and medical journals. In 1986, six gay activists in New York formed the SILENCE=DEATH Project. They developed the now-iconic poster of the pink triangle (an inverted version of the symbol sewn onto concentration camp uniforms by the Nazis to identity those imprisoned as homosexuals) above the words SILENCE=DEATH. They wheat-pasting these posters around New York City and issued a manifesto declaring that “silence about the oppression and annihilation of gay people, then and now, must be broken as a matter of our survival.” The slogan and the logo are closely associated with the AIDS Coalition to Unleash Power (ACT UP), the direct-action group that was formed in New York that same year with the participation of the SILENCE=DEATH Project members.
When I heard the slogan “silence=death,” it was a perfect fit for my call to advocacy. I lived in Delaware, smack in the middle of the infamous I-95 corridor, mere hours from New York, Philly, and D.C. I marched, I protested, and sadly, I made panel after panel for the AIDS Memorial Quilt.
Silence=death is just as pertinent today as it was in the 1980s. Silence about the challenges of being a long-term survivor can lead to the death of supportive services necessary to maintain health. Silence about the need for increased mental health and substance use disorder services perpetuates stigma and ensures that people will not get treatment. Silence about the difficulties inherent in negotiating sexual relationships, whether gay, bi, trans, straight, let alone HIV-positive, leads to continued transmission. Silence about what it takes to maintain faith, hope and joy while living with HIV guarantees the complacency of a society that thinks antiretroviral medication solves “the problem.” I am continually amazed when I tell someone I work in HIV, and their response is “I thought that was over.”
We need to continue to speak out, those living with and those affected by HIV, in order to ensure that we are not forgotten, and that the legacy of those who can no longer speak out continues. Federal legislation for the Ryan White HIV/AIDS Program requires consumer involvement. While it is much more common now for people living with HIV to become members of HIV community planning councils, many of these groups are still dominated by service providers. Join your local HIV planning council and speak your truth.
Advocacy around HIV does not have to involve marching in the streets. Because so many of the issues facing people living with and at risk of HIV are societal, a good starting place could be to become involved in local issues. Attend public meetings of your city council and speak up for increased funding and services for those struggling with mental health and substance use. Engage in one-on-one conversations with local candidates running for office. They are supposed to represent you, but how can they if they don’t know who you are and what you care about? Talk to your own doctor and dentist about routine HIV testing and pre-exposure prophylaxis (PrEP).
I’d like to close with a quote from Elie Wiesel’s 1968 speech accepting the Nobel Peace Prize:
I swore never to be silent whenever and wherever human beings endure suffering and humiliation. We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented.
Delaware native Nina Bennett is the author of the poetry chapbook Sound Effects (Broadkill River Press, 2013) and Forgotten Tears: A Grandmother’s Journey Through Grief (Booklocker.com, 2005). Nina was among the first in her state to be certified to perform anonymous HIV counseling and testing. She also served as a buddy, facilitated a support group, and worked as an HIV/AIDS case manager. Her poetry has appeared in numerous journals and anthologies including Napalm and Novocain, Reunion: The Dallas Review, Houseboat, Yale Journal for Humanities in Medicine, Philadelphia Stories, and The Broadkill Review.
The 4H’s of HIV. Links all over the Internet will tell you that the CDC coined the phrase “the 4H’s of HIV” but that is not true. That’s why I included in Nina’s post a link to the the March 1983 Morbidity and Mortality Weekly Report (MMWR) where it is clear that they are simply listing groups that had accounted for the AIDS cases seen to date. The MMWR report does not even include the word “heroin,” but rather refers to “abusers of intravenous (IV) drugs.” The phrase “4H’s of HIV” seems to have sprung up in casual discourse among healthcare professionals and was presumably enshrined in various printed and published sources, but to my knowledge was never used by any credible source as a valid medical or public health term.
The SILENCE=DEATH poster. The six members of the SILENCE=DEATH Project were Avram Finklestein, Brian Howard, Oliver Johnston, Charles Kreloff, Chris Lione, and Jorge Soccaras. The image of the original poster included above comes from The Nomos of Images website. There the image is large enough for you to make out the text beneath the image, which reads:
Why is Reagan silent about AIDS? What is really going on at the Center for Disease Control, the Federal Drug Administration, and the Vatican? Gays and lesbians are not expendable…Use your power…Vote…Boycott…Defend yourselves…Turn anger, fear, grief into action.
There is a wonderfully informative post by Avram Finklestein about the genesis of the poster and its relationship to the beginnings of ACT Up on the New York Public Library blog.