May 8, 2011
WHILE I WAS AWAY…
Since my last post in August 2010, my mother’s health declined. Following minor surgery after she was filmed for SEX POSITIVE, my mother wasn’t getting the care she needed; left bed-ridden, health complications mounted. While explaining the situation to my longtime friend and physician, Dr. Joseph Sonnabend, I expressed my growing suspicion that some elderly Americans are more likely to die from neglect than old age. Once Joe confirmed my fear, I knew I couldn’t let that happen to my mother.
What I didn’t know was how I could leave my New York City apartment after 32 years and move back to a place in New Jersey that I consider hell, but others call the suburbs. Manhattan has always been my bohemian Oz and Eros, the only place on the planet I can call home.
I kept visiting my mother more often, until I found her laying helpless in her waste for 24 hours. If that wasn’t painful enough, she didn’t know how to ask me for the help she needed. For a woman who spent decades washing, cooking and cleaning up after a husband and three sons to be discarded like that, felt so unjust and infuriating. I stepped outside onto the patio to figure out what to do.
My mother describes her life as “going from parents who adored her to a husband that cherished her.”
My parent’s marriage was an affection-filled love story until 1975, when my father died unexpectedly at 54 and left my mother with no way to meet the mortgage payments to hold onto their house. Everyone assumed my mother would fall apart, but as the burgeoning women’s movement suggested, it’s all too easy to underestimate a woman.
My mother took in boarders and baby-sat for $2.00 an hour. She ate whatever was cheap, like the ends of deli meats. She used fans instead of air-conditioning and slept in sweaters during winter to keep utility bills down. She returned to college to be a substitute teacher but was asked to do home instruction after demonstrating a gift for the students no one wanted: kids with special needs or terminal illness, pregnant teenage girls, and boys suspended for fighting. “They didn’t just need a teacher,” she said. “They needed another mother.”
When the school administration gave her an award, she was so proud, until none of her family or friends attended the ceremony. She never took a vacation and she didn’t stop working until she was 76. She’d paid off the house years before but wanted to be sure that she’d saved enough so that she’d never have to go to a nursing home and be “surrounded by strangers.” To her, that’s not living — that’s what family is for.
Recalling my mother’s history gave me my answer.
There are things you think you can never do until love makes the impossible the imperative. I had no idea how to confront the task at hand, and as a gay man who never had sex with a woman, how would I know how to wash what I never encountered in life? But the determination I could see on my mother’s face, which I recognized in myself, compelled me to figure out what to do step by step on my own.
When I’d finished bathing and changing her, we exchanged a mutual look of shock and awe: Neither of us could believe what I’d just done, but an overwhelming sense of accomplishment left me feeling like I was glowing inside. As I hugged her, my mother said, “Richie…you’re all I got.”
It was a moving moment, but I knew it wouldn’t linger: My mother disdains sentimentality. Suddenly, with a whimsical, Yiddish inflection, she declared, “Now I know why God gave me a gay son!”
I never thought I’d live to see the day when that came out of her mouth.
My mother never liked my being gay and never got tired of reminding me: “You ask me who’s to judge? Me. I judge. I’m the judge.”
I rarely argued back: She’d never understand that, for me, being gay was the best part of being alive. Raising me to have self-esteem and to question everything helped me to live life on my own terms, even if she didn’t like where it led me. “I have nothing against gay men,” she often said, ” it’s just that the thought of two men together makes me want to brechhh.” (That’s Yiddish for puke.)
Maybe this was our karma: If my life made her nauseous for many years, so did the prospect of moving home to take care of her like this. But as I sat there with my arm around her, I realized the last time anyone had given her a hug, a human touch or any physical affection was the last time I had. It was time to go back home.
For 8 months, it’s been a grueling, night and day job taking care of her and the incessant, torturous paper work that health care monopolies in America inflict on the sick. I knew that from AIDS; I’d just spent a soul-sucking year battling my insurance carrier for “losing” my checks in their system, which left me uninsured. My blood counts fell to dangerous levels when I finally learned that I had to register an official complaint with a state commissioner to stop them. Now, I’m dueling for two – navigating a never-ending, contemptuous array of bureaucratic hoops to jump through to get my mother’s treatments and doctors’ house calls covered. Then, every 3 months, I have to cash in more of her “in case of emergency” bonds that she’s held on to all her life to pay outrageous premiums to a company whose bottom line prefers her dead.
I have some hope because President Obama is trying to make things better, but without more people agitating and demanding single payer health insurance, powerful corporate forces will find ways to keep increasing their profits and people’s suffering along with it. They get away with it because many Americans don’t see how disposable they are until they’re literally fighting for their lives. If that sounds like hyperbole, have a hoop: As of February, Medicare now requires 3 to 5 months of detailed progress reports on no less than 3 specific bedsores (size, texture, location) written by a doctor in their system before they will consider whether or not to cover the cost of an air-alternating mattress to prevent these life-threatening infections. It’s health care designed to wear you down, break your spirit or rid your annoying ass by red-tape induced preventable death.
My mother’s fragile health now rests in my hands. That’s an awesome responsibility. It’s been hard to block out time for writing when every month brings another health crisis that becomes another task for me to manage and another reason to re-enact Shirley Maclaine’s “Give my daughter the shot!” scene from “Terms of Endearment.” We’ve been on a waiting list with a social service agency to get more help at home, but when I inquired what was taking so long, I learned that someone has to die to free up an aide. People like my mother who love this county, who worked hard and paid taxes all their lives, surely deserve better than this.
I wrote this because I didn’t know how else to answer all the people who’ve been complaining that I’m taking so long to respond to their emails, that I’m never on Facebook, that I let my website go.
I’ve realized I have to hire help, which will free up some time for me. In the meantime, I’ve started working with Dr. Sonnabend to digitize my video archives of the history of the earliest grassroots responses to AIDS and safe sex so that I can post them here.
Last week on a Logo segment of “1 Girl, 5 Gays”, the men were asked if they used condoms for oral sex. They all said they didn’t but had no idea why they felt they were being safe. For people confronted with questions like that, history has the answers — but it’s not in the history we’ve been fed, it’s in the history that’s been censored. I hope this website will be that kind of resource.
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My ‘SEX POSITIVE” JOURNEY BEGINS
August 26, 2010
I had no idea what to expect on that first day in April 2007 when I sat down to be filmed and interviewed for Daryl Wein’s documentary, SEX POSITIVE. It took a bungee-jumping leap of faith to let a heterosexual guy half my age depict my hyper-sexual journey as a gay man in the 1970s, in order to explain how that led me to collaborate on the invention of safe sex (for AIDS) and why it became my life’s crusade. Simply put, I believe that for those at risk, it’s never too late for safe sex—especially for those of us with HIV. It’s a concept that baffles most sexually active gay men I’ve known, but I believe it’s one crucial reason why I remain in good health 25 years after testing HIV positive.
A lot of people crave the spotlight, but it always revolted me. Luckily, Daryl, then age 24, was smart, tenacious and thrilled about being the one to tell his generation the story of how safe sex began. For me, the chance of reaching young gay men and sexually active women of Daryl’s generation was exactly what I’d been trying—and mostly failing—to do with my writing for over 20 years. And so, I leaped. As anyone close to me can attest, I’ve been willing to do almost anything to get safe sex education right because, for so long, I believe we’ve been getting it wrong.
Ever since Dr. Joseph Sonnabend, Michael Callen and I published How to Have Sex in an Epidemic: One Approach, in May 1893, safe sex education in America has been under assault—mainly from the right wing—but also from gay-run AIDS organizations for whom crafting safe sex messages was often about what they should say (to maximize funding) or could say (what will straight people think?) instead of what they had to say to those whose lives were most at risk. That began years of damaging efforts by activists to focus on de-gaying AIDS in America when we should have stayed focused on who always was, who always has been, and who still is being hit the hardest by HIV: sexually active gay men who engage in receptive anal sex with partners whose HIV status is unknown.
I’m surprised to still hear activists proclaiming that viruses don’t discriminate, meaning everyone is at risk for AIDS. Even the CDC is finally admitting what their evidence has always shown: that the greatest risk for new HIV infections—by far—is and always was, men who have sex with men. Contrary to popular opinion, this not the failure of men who have sex with men–this is the failure of prevention education.
If there was hope for safe sex, it would have to come from people who were much more comfortable celebrating the joys of receptive sex, particularly receptive anal sex than those who took charge of “educating” them. The failure to do that through targeted, celebratory safe sex campaigns over the past 27 years has, in fact, perpetuated the very problem activists and educators have been trying to solve. Whatever hope there was for safe sex practices would have to come from the common sense of ordinary, everyday people. The most thrilling discovery of my SEX POSITIVE journey was that this was exactly what I found.
This journal will cover many different issues, including two new threats to safe sex. Along the way, I want to pass on what I learned from audience reactions and hundreds of individuals who confided in me what it’s been like for them to navigate safe sex amid a cacophony of dueling, contradictory advice. I’ve learned so much from young people struggling to keep sex safe, many of whom are a testament the “do-it-yourself” approach and work that I did with Dr. Sonnabend and Michael Callen. When a crisis comes along, sometimes the best response is to figure out what to do on your own instead of relying on others to do it or explain it for you.
Spanish Version below/En Espanol:
Mi Viaje de “Sexo Positivo” Comienza
26 de agosto 2010
No tenía idea de qué esperar aquel primer día en abril de 2007 cuando me senté para ser filmado y entrevistado por el documentalista de SEXO POSITIVO (SEX POSITIVE) Daryl Wein.
Tomó un salto de fe en bungee-jumping dejar a un tipo heterosexual de la mitad de mi edad representar mi viaje híper-sexual como un hombre gay en los 70’s, para explicar cómo eso me llevó a colaborar en la invención del sexo seguro (en el SIDA) y por qué se convirtió en la cruzada de mi vida.
En pocas palabras, creo que para aquellos en riesgo, nunca es demasiado tarde para el sexo seguro – especialmente para aquellos de nosotros con VIH. Es un concepto que desconcierta a los hombres gays más sexualmente activos que he conocido pero creo que es una razón crucial por la que he permanecido con buena salud después de 25 años de haber sido diagnosticado VIH positivo.
Muchas personas deseaban llamar la atención y siempre me había sublevado. Por suerte, Daryl, en ese entonces de 24 años, era inteligente, tenaz y estaba emocionado por ser quien contara a su generación la historia de cómo comenzó el sexo seguro. Para mi, la posibilidad de llegar a los jóvenes gays y las mujeres sexualmente activas de la generación de Daryl era exactamente lo que había estado intentando – mayormente fallando – con mi escritura por más de 20 años. Y así, se dio el vuelco. Como cualquiera cercano a mi puede atestiguar, he estado tratando de hacer todo lo posible para conseguir una educación correcta sobre sexo seguro ya que creo que, por mucho tiempo, la hemos estado recibiendo mal.
Desde que el Dr. Joseph Sonnabend, Michael Callen y yo publicamos Cómo Tener Sexo en una Epidemia: Una Aproximación (How to Have Sex in an Epidemic: One Approach), en mayo de 1983, la educación sobre sexo seguro ha sido objeto de asalto. Principalmente desde la extrema derecha pero también, desde las organizaciones gays que trabajan con el SIDA para las cuales la elaboración de mensajes sobre sexo seguro tenían que ver, a menudo, con qué debían decir (en orden de recaudar más fondos para financiación) o correspondía decir (por lo que pudieran llegar a pensar los heterosexuales) en lugar de ser lo que realmente tenían que decirles a aquellos cuyas vidas estaban en riesgo. Esos primeros años de terribles esfuerzos de los activistas en focalizarse en sacar lo gay del SIDA en Estados Unidos cuando deberíamos haber estado focalizados en lo que siempre ha sido más golpeado por el VIH y sigue siéndolo, la comunidad gay sexualmente activa que recibe sexo anal de compañeros cuyo estado de VIH es desconocido.
Estoy sorprendido de seguir escuchando analistas que proclaman que los virus no discriminan, es decir, que todo el mundo está en riesgo de contraer SIDA. Incluso el CDC está admitiendo finalmente lo que su evidencia siempre mostró: que el mayor riesgo para nuevas infecciones por VIH es – por lejos – y siempre ha sido, hombres que tienen sexo con hombres. Contraria a la opinión popular, este no es un fracaso para los hombres que tienen sexo con otros hombres, este es un fracaso para la educación preventiva.
Si hay esperanza para el sexo seguro debería venir de la gente que se ha sentido más cómoda celebrando los placeres del sexo receptivo, del sexo anal receptivo particularmente, más que de aquellos que se han encargado de “educarlos”. El hecho de no haber apuntado a campañas dirigidas de celebración de sexo seguro en los últimos 27 años ha, de hecho, perpetuado el gran problema que activistas y educadores han estado tratando de resolver. Cualquiera esperanza que haya para el sexo seguro debería venir del sentido común de la gente corriente. El descubrimiento más emocionante de mi viaje de SEXO SEGURO es esto, lo que he encontrado exactamente.
Este diario comprenderá muchos problemas diferentes incluyendo dos nuevas amenazas para el sexo seguro. A lo largo del camino quiero transmitir lo que he aprendido de las reacciones del público y cientos de personas que confiaron en mi lo que ha sido para ellos navegar dentro del sexo seguro en medio de una cacofonía de duelos y consejos contradictorios. He aprendido tanto de la gente joven luchando para mantener relaciones sexuales seguras, muchos de los cuales son un testimonio del “hazlo tu mismo” al que apuntábamos y trabajábamos con el Dr. Michael Callen y Sonnabend. Cuando una crisis se presenta, a veces la mejor respuesta es tratar de resolverlo por tu cuenta en lugar de relegar en otros esa responsabilidad y la de explicarlo para ti.