When I first heard that the Chinese government was promoting safer sex at the 2008 Olympic Games by distributing information and condoms in hotels throughout Beijing, I was psyched (yeah, I know, I’m so ’80s). (Read the story here: http://www.asiacatalyst.org/DJpr0808.html and and http://www.abcnews.go.com/Blotter/story?id=56038308&page=1). Their reasoning? They want to crackdown on potential protesters. Detainees will not be allowed to leave the country while the Olympics are taking place. Which begs the question of whether the Chinese still fear that admitting that they have an AIDS epidemic will taint their reputation.
“None of the Asia Catalyst fellows planned to speak to the media or protest while overseas,” Meg Davis of Asia Catalyst said. “As always, Chinese authorities generate more bad press when they detain peaceful AIDS advocates than when they simply allow them to get on with their work.”
One of the AIDS advocates who was kept from traveling is Duan Jun—the 35-year-old founder of AIDS Care Home (关艾之家), an organization in Henan province providing support to children affected by AIDS. He has been prominent as a national advocate of AIDS treatment access, and as a representative to the Country Coordinating Mechanism of the Global Fund to Combat AIDS, Tuberculosis and Malaria.
A good friend of my family was an executive for Johnson & Johnson during the time when someone tampered with Tylenol. Do you remember the hysteria? His approach to the news—which is now a case study at many famous business schools—was to embrace the truth that someone had messed with Tylenol and, in order to protect the American people, yank every single bottle of Tylenol off the shelf. It cost J&J millions both in the wasted product and in the expense of replacing it. But, in the end, admitting that there was a tainted product and owning the truth that these things happen and openly dealing with it, they possibly saved countless lives. And, ironically, in what could have been a trust-eroding episode, J&J secured the people’s belief in their brand; they are still one of the most trust-worthy American brands today.
Perhaps the Chinese government should consider the impact of what it does to their public face when they punish and detain those who are trying to help the people that The People’s government has so long ignored. Perhaps they should study the Tylenol case and imagine how much better they might look if they embraced the fact that AIDS is an epidemic in China, and if they were willing to focus as much on treatment as they seem to be on prevention.
Today, POZ made the backpage of La Voz Global, the daily newspaper of the International AIDS Conference! We have a space in the Global Village where we are collecting photographs and videos of people living with, and those affected by, HIV from around the world (for those of you who are here in Mexico City at the conference...please come see us at booth #200). A very special friend of POZ, photographer Joan L. Brown, is snapping some of the most amazing photos of those visiting the conference.
Here is a snap of the coverage in La Voz Global and some shots of Joan and a subject (who is not necessarily HIV-positive - many of those who are participating in our "Project Dignity" are HIV-negative)...
The Global Village is the community side of the conference and it makes the UN look homogeneous. People from countries and AIDS organizations from around the world gather to share stories of how they support people living with HIV, or do prevention, or raise awareness, or cut hair, or dance, or rap, or rant against injustice in their home countries. The sessions, posters, press conferences and delivery of data are important, but the beating heart of the conference is unquestionably the Global Village.
POZ staff members Jennifer Morton and Keith Dupont, as well as CEO Jeremy Grayzel, are welcoming folks from around the world, recording their incredible stories (while Joan wears her arms out holding the camera at eye level for 12-14 hours a day). Though it is critical for us to cover all the breaking news of treatment and key issues of advocacy being discussed at the main conference center-Centro Banamex-the reason the entire AIDS industry exists is because of the people in the Global Village.
Rather than wax on, probably very unpoetically given my level of fatigue and given that my use of language has become stilted in my efforts to speak simply and without slang to others who are gracious enough to speak to me in English because I can not speak Swahili, Norwegian (Jarle : )), Ukrainian, Dutch, French (well, well enough for anyone to understand), Mandarin, let alone Spanish, I thought I'd just let some pictures tell the story for me. More to come, including videos of shamanistic healing, demonstrations against the price of medications in the developing world and a die-in by ACT-UP Paris.
Good morning from incredibly beautiful Mexico City, the site of the XVII International AIDS Conference (IAC)! The sprawling metropolis is verdant and covered in candy-colored roses. Electric violet flowering vines climb the trees; long-tailed ebony birds take wing above palm-lined avenues studded with giant jetting fountains and bronze and marble statues depicting the rich history of Mexico; the people are so friendly and the food is fantastic. My new fetish? Cactus. In everything, cooked every way. Oh yes, and the way they serve icy Negro Modelo beer atop an inch of lime juice.
More than 20,000 people have come from all over the world to attend this year's conference. When you're trying to maneuver through the throng hustling between the exhibition center, session rooms, poster displays, media center and Global Village, it seems like a lot of people. But given that there are more than 33 million people worldwide living with HIV/AIDS, it hardly seems a big enough delegation. The conference is housed in a massive glass structure overlooking a horse racing track and the Global Village is set up under giant white tents in the track's infield. The Global Village is the hub of activism-where NGOs and CBOs from all over the world as well as grassroots activist groups, artists against AIDS and networks of people living with HIV (including POZ! We have a booth there and are photographing and video-documenting the stories of positive people-if you're here at the conference stop by booth #200) congregate. Getting between the various far-flung corners of the conference is a workout. I think I may have walked close to 15 miles already...judging from the searing pain in my calves it might be further. But it's so exciting to be among so many amazing people from all around the globe that the adrenalin powers you through.
Each IAC has a different flavor and emphasis. This year's theme is "Universal Action Now" and I must say that there does seem to be a feeling of immediacy and ferocity around the activism here. That's the good news. The bad news is that there is sense of needing direly to respond because we seem to be losing a grip on our upper hand on AIDS. From the fact that there are hardly enough health workers around the world to administer the care we need (Medecins Sans Frontiers gave a rousing report on how difficult it is to keep healthworkers around when they a paid a mere fraction of the cost of the medicines they are administering) to the ongoing criminalization and human rights violations that continue around the world (case in point: the missing pair of HIV doctors, Arash and Kamiar Alaei in Iran) to the shocking revised numbers of HIV incidence in the United States (released Saturday by the Centers for Disease Control and Prevention) that show that severe spikes in the numbers of new HIV infections among African-Americans and gay men, it is clear that universal action is essential right now.
I was sitting in the "People Living with HIV Lounge" yesterday with an HIV- positive woman from Norway. She'd been given a fan (created by aidshealth.org) at the opening ceremonies. It read: "10 Million on ARVs by 2013; AIDS Treatment Now." As she unfurled the fan and showed it to me, she said, "2013 is too late. Way too late." That pretty much sums up the overriding tenor of this conference. There is no tomorrow for too many people and while I recognize that we can't wave a wand as she was waving the fan and address all the issues we need to with AIDS, it is incredible to me that in 2008, we are still having many of the basic discussions that seemed appropriate for the beginning of the epidemic but that seem frustratingly overdue for being solved now.
I arrived last last Wednesday night having come early to participate in the pre-conference Living 2008 Positive Leadership Summit (PLS)-an incredible gathering of almost 400 HIV-positive activists who traveled from 88 countries to gather and discuss key issues for the leadership of HIV-positive people around the world. The PLS is the brainchild of the Global Network of People Living with HIV (GNP+) and it has been held periodically in different locations around the world since 1986. The idea of the summit is to bring together HIV+ people in a safe and empowering environment in order to strengthen the PLHIV movement. The objective of this year's summit was to ensure sustainable positive leadership on the following advocacy priorities: universal access to treatment, care, support and prevention; criminalization of HIV transmission; positive prevention; sexual and reproductive health rights; and leadership.
Many amazing activists spoke at the summit including: Anuar Luna, a Mexican HIV positive activist and co-founder of the Mexican network of People Living with AIDS; Deborah Williams, chair of the board of the Global Network of People Living with HIV/AIDS; Kokouvi Augustin Dokla, president of Togo network of People Living with HIV/AIDS and member of the Red Cross and Red Crescent PLHIV network and Beri Hull, global advocacy officer for the International Community of Women Living with HIV /AIDS (ICW).
At the opening ceremony, Anaur Luna spoke of the need for new HIV-positive leadership from all sectors, especially those from the most marginalized groups of people or countries. "In order to be a leader, I first had to go through a process of dealing with shame and guilt. After I was at the International AIDS Conference in Toronto, a feeling of survival prevailed and I [embraced the] possibility of letting go of my shame and adopting the idea that I had rights." He spoke of his own experience of stepping forward as a person living with HIV and said that after his first appearance on CNN, his mother called and said, "I am very proud of you and very proud to be your mother." It was so encouraging to hear that even in Latin America where the effects of stigma may be severe, people who disclose their HIV status and stand without shame can be supported by their families, friends and society.
Dr. Peter Piot, executive director of UNAIDS, opened his talk by saying that he was at the summit because he believed "this is the most important pre-conference event in Mexico."
Regarding his support of the PLHIV movement, he said, "The epidemic is about people, not figures and without [involving] the movement of people with HIV, we can't solve the epidemic. Social change goes beyond the bureaucratic approach. The people who are living with HIV have the answers. That's what's often totally ignored and why attempts to fix AIDS are failing."
Yet, he also acknowledged our progress to date. "For the first time in a 27-year history we have results on a scale never seen before," he said. "It is important to recognize it, but not declare victory whatsoever. In any social movement, if we don't recognize what we have achieved, it will be hard not to be overtaken by burnout. We must also learn from our mistakes and figure out what to do better."
He remarked on the passing of the new funding levels of the (U.S.) President's Emergency Fund for AIDS Relief saying, "The White House committing to $48 billion ($38 billion on AIDS) is an historic event. But my main concern is to sustain and expand the movement and the essential elements are money and leadership dedicated to AIDS." He advocated for aiming high: "Without a bold agenda we won't go anywhere because reality is always lower than our goals." He said it makes him angry when people say we are spending too much money on AIDS. "Three million people are on [treatment] but 6 million are not so it's not enough money yet. We can not be content until the last person living with HIV has treatment. But we all know that that's not possible overnight."
On the issues of stigma and discrimination he said, "We can't accept that there will be 'a little bit' of stigma, 'a little bit' of discrimination. [Getting rid of them] is non-negotiable. I thought when we had widespread access to treatment, stigma and discrimination would be reduced. But it didn't happen. That's because stigma has nothing to do with AIDS; it's about how we feel about sexuality and how we should live. Even when there are good laws [to protect people living with HIV] they're not enforced. Until we imprison people who discriminate, a society is not serious about ending it."
He spoke of how we need to drum up new positive leadership especially among "sexual minorities," women and young people. "My call to you is one of unity and diversity. There are attacks on the AIDS movement coming from all sides. There are technocrats who don't believe they need to involve people living with AIDS in the solutions to the epidemic. Health systems alone are not the answer." He recommended partnering more closely with human rights activists around the world and said that the issue of accountability is important not only for governmental agencies but also for the community itself. Measurability and sticking to timelines, he suggests, help secure funding.
He assured us that though he soon will step down from his post that "the importance of positive leadership is core to [UNAIDS'] philosophy and won't change no matter who the executive director is."
Finally, he said, "Working on AIDS have never been a job for me, it's been a life and I can't imagine a life without fighting for justice so you can continue to count on me."
See my interview with Dr. Peter Piot below.
At the end of the two-day session, rather than offering a minute of silence to pay hommage to all who have passed, there was a minute...well, several minutes...of full-throated yelling at the top of our lungs. After all the incredibly intense strategizing, it felt fitting to give voice to the frustrations that can't help but be stirred by dissecting the state of AIDS around the world today. It was, no doubt, a rebel yell.
Well, I'm off to the session at IAC that will highlight the work we did at Living 2008. The session is, very appropriately, called "Reclamining Our Lives." I believe, and hope, that indeed the international community of people living with HIV hold the answers to how we might end this terrible epidemic one day.
Later this afternoon, I will interview Kevin Moody, head of GNP+, so please visit our IAC conference coverage page at poz.com in the next day or so to hear Kevin's take on the state of HIV-positive leadership around the world.
(For more information on the Living 2008 Summit, you can visit living2008.org.)
It’s not always easy being an AIDS activist and journalist. My mornings all too often begin with my reading nasty news from around the world of discriminatory actions towards people living with HIV, tales of positive people unable to get care or people so overcome by fear of disclosure that they don’t access the emotional support and medical help that they need. Every day, the POZ staff scours the global headlines, looking for news of AIDS, hoping that it’s good, braced for the fact that most of the time, it’s not. My favorite one this morning is about drug addicts in South Africa stealing Sustiva (efavirenz) from HIV-positive people, crushing up the med and mixing it with marijuana to intensify their high. Talk about off label use…
From news of budget cuts for AIDS services to reports of new laws that perpetuate outdated views towards people living with HIV to the intersection of natural disaster, extreme weather and a plague that clearly seems irrepressible despite its treatable and preventable nature, it’s hard sometimes to even imagine what the good news about AIDS would be, even if the worldwide press deigned to publish it. (Well, I do dream daily of one headline: AIDS Cure Found.)
But then there are those occasional days when we hear a piece of bright news about AIDS and I know that the community who continues to fight against the tsunami of ignorance, fear and misinformation is beginning to turn the tide. Even more exciting is when POZ has played a role in the sea change.
Yesterday was one of those days.
Wednesday, we learned that Caleb Glover, the three-year-old tot who graced the April 2008 cover of POZ with Project Runway Star Jack Mackenroth and had been banned from a public swimming pool in Alabama because of his HIV-positive status, got to be the first one into the newly christened pool at Camp Heartland (now One Heartland) in Willow River, Minnesota—a summer camp for children living with HIV.
We'd all met Caleb and his family when they visited us at POZ. Caleb, who was born with HIV and cerebral palsy, just lost his adopted dad, Dick (a warm and delightful man who was also featured in the story in April POZ), and Caleb's been through a bout of health concerns himself. So, yesterday when POZ staffer Michael Halliday asked me if I'd heard the news about Caleb and his adoptive mother, Silvia, I was worried. But then he told me that it was good news...and I was thrilled to hear that Caleb and Silvia were with the wonderful folks at Heartland, taking a celebratory dip in a sparkling new pool. (Caleb and Silvia were invited to One Heartland by the camp’s founder and CEO, Neil Willenson, an extraordinary man who's been caring for HIV-positive kids and their families for 15 years.)
After Caleb's story first broke, we followed up on the national news coverage and did what we could not to let this terrible act of discrimination go unnoticed. As a result of all of the coverage, Caleb has become a modern emblem for the rights of all positive people.
Click here to read the story of Caleb at One Heartland.
Here's the video of Silvia and Caleb:
Click here to read our special report about Caleb.
Click here to read my editor’s letter about Caleb.
Another HIV-related story that brings good news is our cover story for our newly posted July/August issue. It features Jeremiah Johnson, a Peace Corps volunteer who was sent home from his post in the Ukraine by the Peace Corps when they discovered that he was HIV positive.
We first heard about Jeremiah and his plight to charge the Peace Corps with discrimination in a small story in a Denver newspaper. We followed up with Jeremiah and he shared his inside story with us. In response to many in the community who wrote letters of protest to the Peace Corps, the efforts of the American Civil Liberties Union (ACLU) and pressure applied by the press (including our story), the Peace Corps has made a public statement claiming that they have changed their policy towards HIV-positive Peace Corps applicants and volunteers.
A few weeks ago, on the day we were going to press with the July/August issue, POZ's Deputy Editor Bob Ickes walked into my office and asked whether I'd heard the latest about Jeremiah. I asked him to tell me and he read, with a big grin on his face, the email from the Peace Corps stating that they had reconsidered their policy towards HIV-positive people.
Good news like this makes all the other days of delving into bad news worth it. And it is an honor and a privilege to be part of a community that keeps the veritable tidal wave of bad news at bay by celebrating HIV-positive heroes like Caleb and Jeremiah. Their courage defies the wave of darkness that threatens to surround this disease but that ultimately cannot.
Happy Fourth of July. I hope all you HIV-positive folks go for a swim in Caleb's honor...and think of Jeremiah when you're feeling proud to be an American!
I am writing from my hopital bed while the latest antibiotic concoction they have devised for me drips into my arm...the nurse informed me they are springing me from the joint this a.m. - and she reminded me that today (June 21) is the first day of summer!
Hospitals are like casinos. You have no idea about the passage of time, the outside world or climate changes. The only hint of an external world happened last night when a string of ambulances, fire trucks and marching bands passed along the avenue beside my seventh-story hospital window. I could barely hear the blaring sirens and beating drums, but somehow, through the seemingly hurricane-proof-glass window that's sealed shut with industrial-strength glue (presumably so you don't hurl yourself out in despair, something I considered doing when I was denied my breakfast order of "bananas, ice cream and chocolate sauce" by the nutritionist who suggested I try the oatmeal instead) I heard the unmistakable tinkling of the Good Humor truck. I wondered whether I could get past the nurses' station, downstairs in the elevator and across the street (wearing, mind you, a very non-fetching pair of sweat pants, a tank top, and non-skid rubber-soled socks and crutches under my arms) before he got away. I would have killed for a butterscotch sunday. But alas, I could only press my nose against the cool glass and watch summer pass me by.
But today, I get to emerge. I am almost afraid. It seems like I've been in here so long. I feel that I've forgotten how to eat, walk, sleep, even converse (with anyone but a nurse or myself). I am so pale my skin my just self-combust at the first touch of sunlight.
For those who didn't read my last post, I had a staph infection in my knee and had surgery to expediate the healing process. I will spare you most of the gory details except one, because I think it might make you think I'm tough. Yesterday, the
vampires (I now call my surgeons "the vampires" because of their propensity to swoop into my hospital room in the middle of the night and draw many vials of my blood) inserted a "pic" line into my bicep - into my vein and down into the space above my heart, leaving what I prefer to think looks a little like a screw cap wine top sticking out of my (much less bulging after a week in bed) bicep. To this I'll attach chardonnay - oops! I mean liquid antibiotic - once daily for three weeks until I will (hopefully) have suceeded in killing all the bad (and most likely some of the best) bacteria in my body.
Assuming that my knee heals as scheduled, I should be otherwise as normal as one can expect of me and not laden to the gills with pain pills (as I have been much of the week) in a few days. When my horse fell on me in October, I took one Percocet. This week? I can't count that high. But I was pain-medicine free for most of yesterday and last night, getting through the night with the help of a lot of bad TV. I watched a pirate movie starring Judy Garland, MASH reruns (at least I don't have shrapnel in my knee, or Klinger by my bedside) and an infomercial complicated dance moves that give you killer abs (assuming you can dance like the women on "Dancing with the Stars" which I definitely can not).
Despite my fears that the staph was linked to the HIV, my doctors reassured me repeatedly that the staph infection was neither related too nor made worse by HIV. This is simply a reminder that HIV is not the only thing I have to worry about.
This morning, as I was joyously packing, I realized I hadn't totally allowed myself the thought that I'd definitely be going home. There were moments, when my temperature soared over 103 and the pain killers were no longer working and we weren't sure exactly what we were dealing with and whether even the Guns of Navarrone-style antibiotics they'd sent coursing through my veins were effective...that a dark corner of my mind eeked out the question about whether I'd need the chaplain's services afterall.
It's funny, with HIV, I've faced mortality for years. But because I've been lucky enough to be able to get care and tolerate treatment, and because I've just taken pretty good care of myself and been lucky to have the compassion, support and love of my amazing family, friends and coworkers, I've made it through all these years with HIV without ending up in the hospital. I have to say, I'm embarassed to admit that until this happened to me, I'd become a little complacency about my survival.
To suddenly find myself in the E.R. on back-to-back nights, hooked up to machines writhing in pain despite morphine, not caring what day it was or whether it was day or night was a real shocker. As I waited for the cultures of my blood to grow whatever brand of bug had infected me, I got a tiny sense of the terror that those in the early days of the epidemic experienced, and that far too many people today know - the notion that either the doctors don't know what's wrong with you - or they do, but they don't know how, or don't have the tools, to cure what ails you.
Every brush with death has a way of recalibrating our dials so we remember what's truly important. Embracing mortality has a funny way of reminding us to appreciate life.
In the elevator on the way out of the hospital, I was sitting a little hangdoggish in my wheelchair - across from an eldery Chinese man. A cheerful hospital worker said, "Going home today, are you?" and both the man and I nodded. Then, our eyes met and he smiled at me. Then, he laughed. And I laughed back. I knew exactly how he was feeling - I couldn't believe we were going home. They wheeled us out onto the sidewalk and I took my first breath of fresh air in a week and felt the sun on my closed eyelids. Our families had gone to get the cars and the man and I were just parked there, breathing in life. I felt his spindly hand on my arm and he squeezed it. We never said a word to each other but as he drove away looking backwards out of his family's car, I felt that we'd said a whole lot more with our silent understanding than we could have with words.
***
I'm home now, having slept a couple of days and having sucessfully learned to use the IV port in my arm. Not since I first got my diagnosis of HIV have I felt this appreciative of life. My first bite of ice cream was amazing - and perhaps because my leg is still recovering from surgery, I am walking a whole lot slower, which, amazingly, affords me the time to smell the wild roses and freshly cut grass. The newfound sense of appreciation I am experiencing reminds me of the first bowl of pasta I had after I was diagnosed. The sauce was Prego - out of the jar - and the pasta was dried and in a box, but somehow, an accute knowlege that death is inevitable is enough to render even the most ordinary daily experiences extraordinary. If there is an upside to this darm disease, I think that's it.
There was one bright spot of the week (aside from the visits and calls and emails from so many lovely people). After not washing my hair for 5 days (I know, gross) and then washing it with whatever the hospital gave me and being unable to dry it or brush it (they only gave me one of those tiny men's combs) and then falling asleep in a painkiller haze on it for like 4 hours, I sat up in bed...to hear the nurse exclaim, at the sight of my mile-hile mop, "Oh, you did your hair!" And she was totally serious. That's Jersey for you.
Apparently, you can take the girl out of New Jersey...
Good morning (and I mean morning...the sun is just coming up). This will be a brief blog as I am in the hospital with a nasty (is there any other kind?) staph infection in my knee. I've been here since monday, being poked and prodded and given a whammy of an antibiotic via IV...struggling to choke down the food (how can anyone make bad raspberry ice?) and trying to not let my brain rot by watching the travesty that is American TV...(I am totally hooked on "She's Got the Look" - the 35+ version of "America's Next Top Model" - speaking of which, read this week's interview with AIDS activist and ANTM contestant Nnenna on poz.com).
Ending up flat on your back like this without warning, wondering whether you really can recover certainly makes you reflective. My first morning, a volunteer came into my room and asked whether I wanted the services of a chaplain. I looked at the nurse and said, : "I AM going to make it out of here, right?" And she nodded emphatically. The volunteer explained it was standard operating procedure. I explained that I was leaning about Buddism at the time, though I was raised Catholic. At that, she brightened considerably and asked whether I wouldn't like a rosary. "Pink or black?" she inquired. "Oh pink, please," I said thinking, if nothing else...it could double as prayer beads. They were already blessed, she reassured me.
Regardless of any spiritual leaning, it is certainly times like these that make you seek wisdom from beyond yourself. Which reminded me of an amazing speech given by Dennis deLeon, head of the Latino Commission on AIDS at their annual Cielo Latino benefit in May that I wanted to share with you. Dennis' life's work has been lauded over and over, and I have seen him accept awards before. But this particular speech struck me because it is so indicative of his desire to give back - always - even when it is his turn to receive.
I found his "list" of his life's lessons so helpful. I hope you will too. And thanks to you Dennis, for providing unwaivering inspiration to all of us fighting AIDS - both in the world at large, and inside our own bodies.
When I emerge from the hospital ward, I promise to post the pictures of the UN...as well
as a video of President Clinton from UNGASS.
Wish me a quick escape from hospital hell!
Dennis' speech:
ELEVEN THINGS I HAVE LEARNED FROM LIVING WITH HIV FOR OVER 20 YEARS
by Dennis deLeon
1. BE THE BEST INFORMED PERSON YOU KNOW ABOUT MEDICAL TREATMENTS. EVERY YEAR, DOUBLE YOUR KNOWLEDGE ABOUT THE DISEASE, HOW IT GROWS AND HOW IT CAN BE DEFEATED.
2. BE AGGRESSIVELY INVOLVED WITH CLINICAL TRIALS BECAUSE THEY OFFER THE REGULAR HEALTH MONITORING AND ACCESS TO NEW MEDICATIONS. DEVELOP THE ABILITY TO TELL WHEN YOU ARE GETTING A PLACEBO AND, IF YOU WANT, OPT OUT OF THE TRIAL.
3. LIVE LIKE YOU ARE GOING TO DIE TOMORROW. TRY THINGS YOU NEVER DREAMED OF AND STOP “RESUME BUILDING.” DO THINGS YOU ENJOY AND THAT PAY YOU SOMETHING FOR DOING IT. SO IF YOU DIE YOU WERE AT LEAST DOING WHAT YOUR WANTED.
4. SEE THE BEAUTY OF THINGS AND PEOPLE AROUND YOU AND IF THEY DO NOT APPEAR BEAUTIFUL, WORK HARDER TO SEE THE BEAUTY IN THEM. WHY? BECAUSE BEAUTY CAN SUSTAIN YOU.
5. NEVER BECOME A “VICTIM” OR THE DESIGNATED PERSON WITH AIDS IN THE ROOM. YOU ARE MORE THAN THAT AND SHOULD NOT BE DEFINED BY A DISEASE. YOU ARE NOT A VIRUS SO DON’T ACT LIKE ONE.
6. MAKE YOUR FAMILY PROUD. MY WAY WAS TO GIVE THEM NEWS OF THINGS I ACCOMPLISHED, NEWS WITH MY NAME IN IT SO THEY CAN CIRCULATE THE WORD TO ALL THE EXTENDED FAMILY AND FRIENDS. GOD KNOWS I HAVE PUT THEM THROUGH GRIEF SO MUCH GROWING UP. THEY DESERVE AT LEAST A FEW BRAGGING POINTS. ALL THEY REALLY CARE ABOUT IS THAT YOU WERE VALUABLE AND VISIBLE TO OTHERS AND THAT IT REFLECTS WELL ON THEM.
7. DEVELOP AN ACTIVE SENSE OF OUTRAGE AND ENCOURAGE OTHERS TO DO SO. THIS IS SO CRITICAL. PEOPLE WILL THINK YOU ARE ASLEEP UNLESS YOU SHOUT BOO TO THE POWERS THAT BE AROUND YOU ONCE IN A WHILE. IF YOU ARE NOT OUTRAGED BY INJUSTICE THEY WILL BURY WITH INDIFFERENCE, BUREAUCRACY AND PITY BEFORE YOU ARE DEAD.
8. SPREAD LOVE WHERE EVER YOU GO. NO ONE LIKES YOU IF YOU ARE ANGRY OR REGRETFUL ALL THE TIME. KISS, HUG, REWARD, SURPRISE, AND DO ALL THESE AND MORE LOVING THINGS TO COMPLETE STRANGERS AND ACQUAINTANCES IN YOUR LIFE. FOR EXAMPLE, LOVE IS TO GET ON AN ELEVATOR AT THE FIRST FLOOR AND CONNECT WITH EVERYONE BEFORE YOU GET OFF AT YOUR FLOOR.
9. SEE THE CONNECTIONS. NEVER THINK YOU ARE THE ONLY ONE. YOU’RE NEW FAMILIES ARE PERSONS WHO BECAME INFECTED THROUGH DRUG USE, INDIGENT GAY MAN OR TRANSGENDERED PERSONS AND WOMEN WHO TRUSTED THEIR SEX PARTNERS. THE SHAME, PRIDE, PAIN, SCORN AND FIGHT FOR RESPECT OF ALL THESE GROUPS MUST BECOME YOURS BECAUSE YOU ARE PART OF THEIR WORLD.
10. DON’T FORGET SEX. IT FEELS GOOD AND CAN BE DONE SAFELY. DON’T STOP DOING IT EVEN WHEN YOU ARE LIVING WITH HIV/AIDS. IT’S AS MUCH A PART OF LIFE AS SPRING IS A SEASON.
11. IN ALL OF OUR STRUGGLES FOR FAIRNESS AND EQUALITY REMEMBER THIS: THERE ARE NO PERMANENT FRIENDS OR PERMANENT ENEMIES ONLY PEOPLE SHARING COMMON INTERESTS.
The U.N. is now officially one of my favorite places in New York. I am sitting in the delegates' lounge watching the East River flow past the gigantic windows...it would be entirely scenic save for the slight haze created by the smoke of Galouise (someone help with the spelling! I don't smoke! And I last studied French in high school!) cigarettes...the U.N. is considered "international territory" and, as such, it is exempt from the NYC laws preventing people from smoking inside in the city.
In addition to the incredible diplomacy and history-changing events that happen here, it's just an incredibly cool place, infused with a James Bondian flavor, circa 1972. The halls are filled with beautiful art, flags from around the globe and artifacts donated by many nations. Walking through its hallowed halls, I identifed at least three languages I have never heard before. And, in between high level meetings about global warming and AIDS, diplomats, heads of state and delegates come to this lounge...to watch international soccer. Yesterday, in one corner of the lounge, there was a satellite meeting between the U.S. and Swaziland about battling HIV/AIDS...in the other, a rowdy crowd of football fans cheering for their favorite team. Apparently, the "international" language is "football."
I am here serving on the U.S. delegation attending the high-level meeting of the United Nation's General Assemby on HIV/AIDS. I was invited to join the group by Ambassador Mark Dybul. For those who don't know, Ambassador Dybul is the U.S. Global AIDS Coordinator, and the man in charge of administering the President's Plan for AIDS Relief, proposed to be a $50 billion relief effort to help people living with AIDS around the world, and to prevent the further spread of the disease. The U.N. meeting is cause to hear representatives from countries around the world speak about their efforts to fight all aspects of the pandemic on their home turf. At the conclusion of the two-day meeting (that was preceded by one day of meetings about the connection between HIV and TB - do you know that TB is the #1 cause of death of HIV-positive people in Africa? And that TB - like HIV - is entirely preventable and treatable?), Secretary-General of the United Nations Ban Ki-moon, will issue a report on the state of global AIDS.
It's a unique opportunity for civil society to interact with global government and it would take so many pages to begin to cover all that I have heard discussed and debated here. But one thing that strikes me above all else is the commonality of the experience of people living with HIV, be they an HIV-positive homeless 8-year-old addicted to heroin, living in the basement of a housing complex in Ukraine; a positive transgendered person from India; a young gay man from Australia living with HIV; or a Latina woman who has become an international AIDS activist after contracting HIV when she was raped on her way home from a community dance in Central America. The manifestations of our common issues may be different (someone in Swaziland, for example, may be be able to access care because they have no shoes and can't walk across the hot earth for miles to reach a clinic while a gay person in Russia may be afaid to go to an AIDS clinic for fear of being attacked in a hate crime) but the basic things we struggle to overcome are universal. And we can learn so much by listening to how people in different places create solutions to the same problems.
I have a lot to write, but right now, I'm headed to Iris House in Harlem (where, I reminded any who would listen, the HIV infection rate rivals that of parts of South Africa) to give a speech with Dr. Robert Fullilove. So, I'll post more today - and pictures too!
Later today, I should also be able to link to Ambassador Mark Dybul's address.
To read more breaking news from the UNGASS meeting, go to POZ's home page and read yesterday's and today's news. One newsflash...the Secretary-General thinks the travel restrictions for people with HIV should be lifted! I certainly agree. Don't you?
Stay tuned for more UNGASS news and the latest word from Harlem!
Okay, by now you have likely seen the news reports of the HIV-positive man sentenced on May 14 to 35 years in prison after spitting in the eye and open mouth of a police officer in Dallas, Texas. The jury concluded that the man's saliva could be considered a deadly weapon given his HIV status, despite the fact that there has never been a recorded case of HIV being transmitted through spitting. This is the third time this man, who is homeless, allegedly accosted a police officer with the intent to cause bodily harm. None of the policemen on whom he spit contracted HIV.
I don't know which stuns me more, that the jury came to this conclusion, or the way the American press continues to report these stories WITHOUT clarifying that there is no risk of HIV being transmitted in this manner.
In a follow-up story in the Houston Chronicle, they reference a statement issued two days after the conviction by the Dallas County Health Department that said: HIV is typically spread through unprotected sexual contact, sharing needles or through blood transfusion. The officials who issued the statement wrote that they consider "the risk of HIV transmission through saliva and tears to be extremely low." (See that story here: http://poz.com/articles/hiv_spitting_case_1_14621.shtml)
I can not believe that so many years after it has been well established that, regardless of any intent on the part of any one who may think they are using their spit as a "deadly weapon," there is almost no risk whatsoever resulting from the spit of an HIV positive person, the media continues to report these incidents without clarifying the relative risk. Is the media misinformed? Are they reticent to not jump on the "HIV-positive people are bad" bandwagon? Is the lack of balanced and fair reporting a commentary on the state of American journalism? Are we forever going to be relegated to reading sensationalized, incomplete (at best), inaccurate (at worst) reporting about HIV/AIDS?
Given the struggles I have had over the last two years trying to get the mainstream media in the U.S. to rethink the focus of, and increase the volume of, their reporting on HIV/AIDS, I read a story like the one about the man in Texas with total dismay. We need to better educate the American media so that they can help us change the perception of HIV/AIDS. They leave the subject mostly alone, and when they do decide to cover it, they do so without any enlightenment. It's truly frustrating. I am thinking - and would love to hear from you - about tactics we can employ to change the mindsets of producers, editors, publishers and journalists when it comes to covering HIV/AIDS. There are a couple of exceptions...The New York Times, The Wall Street Journal and New York magazine know how to write about HIV.
Last night, I was at an awards dinner that celebrated the Global Business Coalition that fights HIV/AIDS, TB and Malaria. Sumner Redstone, who runs Viacom, was honored for his commitment to using the family of Viacom media vehicles (including MTV and BET) to raise awareness and educate people about HIV/AIDS. It was clear, hearing him speak, that he is personally knowlegeable and totally committed to wielding his media vehicles to fight AIDS in America.
How do we get others to tune into his channel?
Stay tuned, by the way, for a fun, interactive exercise related to this latest prosecution for spitting in the upcoming July/August issue of POZ!
It's been a while since I've blogged (okay, it's been a really long while...) but the POZ team has been busy with a host of things, including developing a cool new stigma-busting online game with mtvU and the Kaiser Family Foundation. The game launched yesterday and it's already creating quite a stir! It's called "Pos or Not" and it's aimed at getting people to see that you can't tell who has HIV and who does not by looking at them. Our hope is that by daylighting all these amazing young people living with the virus and putting them into the mix with people who are HIV negative, people will finally realize that there's nothing "other" or "extraordinary" (in a bad way) about people living with HIV. Hopefully, this will help people understand that there is no reason to discriminate against or stigmatize those of us living with HIV.
Stigma is a barrier to so many things: getting tested, disclosing your status, accessing care, getting funding to support education, prevention, research and treatment, even getting the presidential candidates to discuss the topic of HIV/AIDS. Especially before I disclosed my status publicly, and to a degree, even afterwards, stigma has played a huge role in the decisions I've made about living with HIV. It made me run out of the hospital waiting room where I was getting labwork done when I saw people I knew. It made me leave the drugstore without getting my meds because I knew people standing in line at the pharmacy. And it made me live a life of shame, isolation and fear for nearly a decade.
What has helped me escape stigma is releasing myself from it. I have realized that I made a choice many others do every day: I had sex without a condom. The only difference is that when I made that choice, HIV was present. When others made (or make) the same choice, HIV wasn't (or isn't) there. But the fact that HIV was present when I made the same choice as almost all others on the planet doesn't make me a "bad" person. It just makes me an HIV-positive one. There is no shame in living with the disease and while I understand all too well how fear of being stigmatized makes those of us living with the virus want to sometimes hide our status, the time has certainly come for the world to have a different attitude towards people who merely harbour a retrovirus.
When people living with HIV come forward unapologetically, without shame, and speak about having HIV, it allows them to get rid of the mantle of shame some people want to place on them. Disclosing your HIV status isn't for everyone, and you have to do it when and if it's right for you. But the more of us who come forward and matter-of-factly discuss our serostatus, the more the rest of the world will be likely to understand that those living with HIV are only "extraordinary" in a good way!
I've thought a lot about how we can fight stigma...and I'm still working on developing tactics that might change the way people see those of us living with HIV/AIDS for the better. This summer, at the International AIDS Conference in Mexico City, POZ will gather some of the world's top thinkers to strategize ways we can diminish the stigma around HIV/AIDS.
In the meantime, I've come to the conclusion that one of the most impactful ways to change people's perceptions of HIV/AIDS is to introduce the wide world face-to-face to the HIV community. I think it's easier to fear, dismiss and discriminate against something, or someone, you don't know. So, in the spirit of introductions, I invite you to meet some truly extraordinary young people living with HIV and other who are not who joined this game to support those of us living with, and affected by, HIV/AIDS.
I'd love to know what you think!!!
Play the game:
If you are having trouble connecting to the game through these links, visit www.posornot.com.
Okay, some of you have already seen that I’m in Kenneth Cole’s new Spring 2008 fashion campaign. For those who haven’t, I wanted to tell you about it. Not to self-promote, but because it is a great campaign with other people who, according to the folks at Kenneth Cole, “replace stereotypical models with bold, unexpected people of substance.” (Marketing people make everything sound great.) The campaign uses the new media cleverly to get across the point that, as the tagline says, “We all walk in different shoes.” It’s based on the notion of 25 years of non-uniform thinking, alluding to Kenneth Cole’s untraditional approach of using his multimillion dollar ad campaigns to not only sell shoes, handbags and clothes, but to sensitize people’s minds, making them aware of critical social issues and maybe even encouraging them to change their behavior for the better.
In this era when we discuss things like whether too much U.S. money is being spent on AIDS overseas (it is not, we just simultaneously need additional funding allocated to prevent AIDS in America and to help Americans living with AIDS) or whether spending millions to raise millions to fight AIDS is a viable equation (it is, if it raises money that would never have been raised otherwise), I think it’s interesting that money can be doubly-purposed—in this case, to sell fashion and to open minds.
Everyone in the campaign has an amazing story to tell of overcoming a different challenge. What was interesting was that my challenge—HIV—was hard to show. One woman, Aimee Mullins, is an incredible athlete with artificial legs. A young man, Sonny Caberwal, dresses in the traditional clothing of a practicing Sikh while speaking out against racial profiling. People can see the obstacles they had to overcome. But HIV? How to best show that?
We decided on a faux-tattoo on my arm because I once was going to brand myself, visibly, with “HIV+.” In the early days of living with HIV, I knew the importance of telling people that I was positive, but it was so hard. I was so afraid of rejection. I thought if my body said it, then my lips might not have to. But, I also thought there may come a day when they’d cure HIV and then I really wouldn’t want the tattoo. I decided that I would just summon the courage to speak up.
I didn’t always, at first. So I left a lot of people confused about why I would suddenly just vanish from their lives. It was just that when I met someone new, I wasn’t sure how they’d react and if I got the sense that they would reject me, I’d just skip disclosure all together. But, of course, when it came to potential sexual partners, this wasn’t an option (I didn’t want to expose anyone to the virus with or without their knowing, even if everything was protected) so, I walked away from a bunch of people never really knowing what they’d say if I told them.
Now in my 11th year of living with HIV, it’s gotten easier to disclose. The funny thing is, I still have to do it all the time. I thought after spending the last two years taking openly in public about HIV, I’d get to the point where I wouldn’t have to disclose. But there are lots of people who don’t read POZ, don’t watch Oprah and still haven’t seen the Kenneth Cole campaign. So, when I say I work for “POZ” they hear “PAWS” and think I write about cats and dogs.
It’s been an incredibly liberating journey for me. A little over two years ago, I was in shock waiting for the April 2006 POZ cover to hit the streets and waiting for a story about my appointment at POZ to break in the New York Times newspaper. Then, I was scared out of my mind about what would happen. A little over two weeks ago, the day that the Kenneth Cole campaign came out in the New York Times newspaper, I was surprisingly calm. I realized I’ve become so matter-of-fact about disclosing my HIV status that I have to remind myself that it is still shocking to people.
I guess the point is that even the most shocking news becomes banal when told over and over. And, as someone once said to me in my early days at POZ, “Don’t worry, you’ll be yesterday’s news soon enough.” That was a relief, then. Now, I hope lots of people see this campaign and I hope it shocks them into the reality that while people discriminate against other people for all sorts of things, AIDS is the ultimate equal opportunity offender and it can, and does, happen to every sort of person in the world.
Oh yeah, and I’m rethinking that tattoo. The creative director, who calls the people in the campaign “non-uniform thinkers,” said I was a “non-uniform inker.” I like the ring of that. I think it might me time for my body to make a statement that my lips are all too familiar uttering.
Let me know what you think of the campaign…and the ink!
Subscribe to this blog's feed
