Nothing About Us Without Us
book review by Lawrence D. Mass
Children of Lazarus: The Forgotten Generation of Long-Term AIDS Survivors. edited by Les K. Wright
As I was writing my column, Bears and Health, for American Bear and A Bear’s Life Magazines, Les Wright was compiling what would become his two-volume collection, The Bear Book, to which I contributed a chapter. Though not trained in public health per se, I learned from hitting the ground running as an outlier physician to perceive public health through lenses of what I began calling community medicine. The gay bears, loose aggregates of stereotypically middle-aged, over-weight and sexually active gay men were, it seemed to me, like other public health cohorts — immigrants, prisoners, addicts, the mentally ill, streetwalkers and the homeless — in being without census representation or mainstream recognition, medical representation, outreach or services.
Wright is a largely unsung hero who writes about the interstices and corniches of our communities — primarily those that LGBTQ+ and HIV/AIDS. The current anthology is devoted to what he and others have designated as the AIDS Survivor Syndrome. As writers are wont to do, in parlaying the stories of others, he is telling his own tale of surviving and thriving with HIV/AIDS.
While a precise definition of “the AIDS survivor syndrome,” like “gay sensibility,” can seem too elusive to be circumscribed by a single term, as the stories in this collection attest, recognition and identification are unmistakable and mark it as a cluster of symptoms and phenomena worthy of consideration: feelings and experiences of loneliness, isolation, abandonment, fear, hopelessness, stigmatization, guilt and especially survivor’s guilt, shame, anhedonia and suicidality.
But for all the sadness and tragedy of the litanies of social, political and medical malfeasance recounted here during the pre-HAART era, most are testimonial to the resilience — of LGBTQ+ life, culture and community, and the survivors of HIV/AIDS, of those who are/were themselves poz and those of their partners and caretakers who are/were not.
In the bigger picture, Children of Lazarus is a priceless chronicle of pride and hope. Of additional medical and sociopolitical interest will be its inclusion of the Denver Principles, captured in the slogan: “Nothing About Us Without Us.” Spearheaded by Michael Callen and the Advisory Committee of People With AIDS in 1983, it laid out, like no document ever written before or since, the determination of persons with HIV/AIDS to be represented on all medical policy boards and in all decisions affecting them. Just as women were no longer willing to accept decisions about their health being made exclusively by men, and LGBTQ+ people exclusively by heterosexual men, and blacks only by whites, PWA’s (persons with AIDS) were demanding equality of representation across the board going forward.
Less well-known are the San Francisco Principles that followed in 2020 and which likewise enhance the Lazarus collection. As boldly summarized in “Our Demands,” requests for specialized training and services are extended to AIDS caregivers, and to those, now senior, in need of living assistance.
With the courage and commitment that has always found gay San Francisco in the forefront of progressive thinking and activism, these Pinciples conclude with a political statement of what seems to me, as the sanctioning of marriage seemed to me in the early period of AIDS, as an essential consideration in the long-range preventive medicine of HIV/AIDS, STD’s and countless other illness and conditions with sociocultural and political underpinnings:
“We must align the fight for long-term HIV/AIDS survivors with other social and healthcare justice movements, such as Black Lives Matter, LGBTQ rights movement, the women’s movement, the Native Americans’ movement, and all other movements and organizations working to end racism, sexism, ageism, homophobia, and transphobia around the world. With these principles in mind, we are ready to lead the fight for health and social justice for long-term HIV/AIDS survivors everywhere. From San Francisco to the world, we invite you to join us in this fight.”
— SEPTEMBER 2020, SAN FRANCISCO, CALIFORNIA, USA
Introduced by and concluding with a summary, ringing contribution from editor Wright, the Lazarus collection goes on to showcase the stories of 15 contributors from a range of backgrounds and experience. Many of these are survivors who lived their death-sentenced lives with HIV/AIDS prior to the first HAART “cocktail” in 1996. Many speak of their indebtedness to those who went before, who fought and fell in battle. Most feel a combination of humility and commitment to service, to which their story-telling is testimonial, and to a future that is once again threatened on every front. They all count their blessings.
Henry Breaux writes, volunteers, and speaks for those no longer here to speak for themselves. Martina Clark has conducted condom demonstrations in many of the nearly 100 countries she has visited. Psychiatrist George Collyer remains an avid hiker 36 years following his diagnosis. Additional stories by Richard Daniels, Drew Kramer, Mark John Stevens, Matthew Levine, Stewart Rose, William Schindler, Dawn Trook, Hank Trout, and Bruce Ward are filled with gratitude, the proverbial experience, strength and hope of those who have lived to tell.
The concluding entry, by Wright, is called TEN THINGS I’VE LEARNED FROM LIVING WITH HIV/AIDS FOR 44 YEARS. A spiritual and practical guide for anyone at any stage of life, its lessons are sage and hard-earned badges of honor.
“Don’t get attached to material things. Quality friendships are much harder to make and far more valuable.”
“In times of catastrophe the good in most people will come out.”
Ruthlessly unsentimental, Wright notes of his service with a San Francisco Suicide Prevention Nightline: “Rule Number One in suicide and prevention service: Never tell a caller that suicide is an acceptable option. For many callers suicide was by far the most merciful choice. I eventually quit this job because I could not continue lying to callers.”
“Like many of us, we resisted society’s stigmatization of us as diseased pariahs who deserved the slow deterioration and rapid, excruciatingly painful and ugly death that awaited us. We met overwhelming AIDS phobia, abandonment by our biological families, rejection by some of our gay brothers, and our approaching demise with inner strength. I discovered my resilience.”
“I was always confronted with having to choose between short-term and long-term decisions. The worst short-term choice I made, on the advice of doctors and lawyers, was to do whatever I wanted to in the time I still had. Like many others, I ran myself into huge debt, never expecting to live long enough to face the consequences.”
“I learned to never say ‘never.’ Be it something I never want to do again (like live in central New York) or attempt another boyfriend relationship (so far four attempts since 1986), there’s a good chance it will happen again, and I will have to eat my words.”
“Life is filled with miracles. In time of greatest need, what I call ‘angels’ have appeared. They are invisible helping hands. They have supported me in material need, pointed me to a new solution, or otherwise done for me what I could not do for myself. The light at the end of the tunnel has rarely been the oncoming train I feared.”
“I have come to recognize, appreciate, and accept that, as Harry Hay asserted, we gay men have a special role to play in society at large. He saw us gay men as a third cultural sex (anticipating the current proliferation of non-binary sexes and genders). In 2002, David Nimmons identified several “cultural innovations in social practices,” or traits, distinct to gay men which make clear our special role: altruism, service to others, nonviolent behavior, our patterns in caretaking in communal and sexual realms, emotional intimacy, and others. I have learned to live my life in this mode. I find my true home in gay men’s spiritual communities. Surviving AIDS has solidified my commitment to living my life this way.”
“By living through the horrors of the AIDS epidemic and living with HIV/AIDS for 44 years and counting, I have embraced Joseph Campbell’s advice: ‘Follow your bliss.’ Eventually, I found the courage to do what I really want to do rather than give into societal or other pressure to conform or play it safe. Coming out at age 19 in1972, standing up publicly to homophobia and in legal terms a ‘sexual outlaw,’ set me on that path. I persisted in becoming a humanities scholar in the face of a nonexistent job market. My choices kept me in relative poverty. Living with AIDS and being public about this required me to stand up to the cruel and evil side of humanity. Instead of devoting myself to the pursuit of money or shackling myself to a soul-deadening job in pursuit of financial security, I ‘lived, lived, lived.’ I continue to find joy in my life. In fact, it is greater now than ever before.”
“Life is a struggle. You keep on fighting, or at least I do. The Nazi death camp survivor Viktor Frankl observed in Man’s Search for Meaning that those who survived the experience always had hope they would see the end of their nightmare. The Nazis had designated Jews as lebensunwertesleben (life unworthy of living). Just so for us homosexual men. AIDS was our death camp. Inner strength comes from hope. No matter what living with HIV/AIDS or life in general has brought me I have always had hope. For several years I would wake up with suicide on my mind. Should I jump out the window of my seventh-floor apartment or first have coffee and think it over? Every time I gave hope a chance. The most important thing I have learned is to never give up hope.”
Never give up. Never stop caring, hoping, striving, giving. Wright, by the way, and lest you imagine those were his last words and efforts, is working on Bear Book III: The Emergence of an International Gay Identity, Community and Culture.
United We Stand, Divided We Fall
— spoken by Patrick Henry, Winston Churchill, and others going back to Aesop and probably earlier
As America and the greater world have learned repeatedly through civil and world wars, there is abiding truth, especially for the disenfranchised and otherwise marginalized and stigmatized — especially, in other words, for minorities — in this universal cry of humanity for all times, places and peoples.
For more about Les Wright, see https://leskwright.com/
For me about me, see Lawrencedmass.com
