Word on the Street: Where were you on June 5, 1981, when the world was first introduced to AIDS?
We asked HIV/AIDS advocates, care providers, bloggers and other members of our community where they were at the dawn of the HIV/AIDS epidemic, 30 years ago -- and at what point HIV/AIDS first entered their consciousness.
You can view more articles, reflections, events and blog entries about the anniversary on TheBody.com's 30 years of AIDS index page.
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Tree Alexander, HIV Advocate and TheBody.com Blogger; Brooklyn, N.Y.
I first heard about HIV when I found out an uncle of mine was diagnosed in prison. The word spread when he passed away which was about a year after he was released. My mom was the one who really tried her best to explain something that she didn't understand at that time. She explained to me that his immune system wasn't working right and that he couldn't get the medicine that he needed. This was her brother that went to jail when she was pregnant with me, so everyone was so excited when he got out of prison; I was 12 at the time. I didn't know what it truly meant to have "full-blown" AIDS. I just knew that it was something that made you sick and would kill you.
Vanessa Austin, HIV Services Community Outreach and Education Coordinator, Harlem Hospital Center; New York, N.Y.
As a young woman who grew up in the '70s, free love was a way of life. I on the other hand was not into it! I remember telling my friends, "you better stop being nasty before you get something you can't give back!" I remember everybody telling me I was a prude and I was no fun! I can recall all the folks who were dying from unknown causes at the time. When I saw the news report about this new disease it was like a flash! I remember calling all my friends who laughed at me for not going to the "free love party" and telling them that I was on to something and we all better be careful. At the time they all said it was the "Gay" disease, and I said we still better watch out! Now 30 years later here I am working in HIV Services, still telling folks to watch out 'cause you might get something you can't give back!
Richard Cordova III, Project Manager, Test Positive Aware Network and TheBody.com Blogger; Chicago, Ill.
From the day of my diagnosis I knew what HIV was and how I got it. I can't imagine what it must have been like in the beginning of the epidemic, to be dying of something and not know what it was that was killing you. Or even worse -- knowing what is was, but having a doctor tell you "sorry, there is nothing we can do."
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Shana Cozad, HIV Advocate and TheBody.com Blogger; Tulsa, Okla.
June 5, 1981, was the summer I had just finished 4th grade, and I and my sister were both 9. Every summer my sister and I were the same age briefly, with her birthday being June 2, then I turned older when my birthday finally arrived in August. My brother was 11, but I could still run just as fast as he and hold my breath under water just as long. I was constantly sure I could keep up with him with anything he tried to do. I don't remember what age I could finally ride my bike faster than him, I just remember that it happened.
At age 9 we were living in Oklahoma still. Family life was simple. I was always the more complicated one. I was definitely a case of ADHD, but we didn't have those terms back then. My mom just described me as being "full of beans" and sent me outside to play as often as she could.
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I rode my bike. I climbed trees. I picked the daffodils in our front yard. I swam and got ear infections every summer in our lake. I took naps in our orchard. I petted the horses. And I played with my dog. Saturday mornings, I was up at 6am to catch the early start of Saturday morning cartoons.
My favorite foods were peanut butter and jelly sandwiches, grape soda, Tang, and Cheetos. I especially hated Brussels sprouts and cooked spinach, and nearly gagged every time my mom made them.
Age 9 is a carefree age. You're big enough to play hard and get really dirty and I was allowed to ride my bike really far... as long as I was home at sunset.
AIDS was never mentioned in my household. I don't remember hearing it on the news until the late '80s and I was 17. I think I remember it being mentioned more on MTV in a way I could sort of understand ... but didn't really understand I was at risk. It was portrayed as a gay disease or drug users' disease.
My French teacher, when we lived in Holland, was the first person who spoke to me about AIDS. He was gay. He said it was affecting lots of gay friends and it was very scary. I was afraid for him and thought he might die.
But at age 9, AIDS was the other side of the Universe from me ...
Brooke Davidoff, HIV Advocate and TheBody.com Blogger; Seattle, Wash.
I was 3 in 1981. I can't say I remember much back then. I learned about HIV from the media. When Magic Johnson came out; and then really from MTV's The Real World. I loved Pedro Zamora and my heart broke when he died. I still remember the episode of his funeral; I watched and I cried for him.
I did not freak out when I was diagnosed with AIDS in January 2010. I got angry at the medical community. The statistics about HIV and how it mainly affects lower-income people since they have no medical insurance doesn't include me or anyone else I have met who has it. From fan emails I've learned a lot of normal middle-class people wake up one day to realize they are in this silent shunned club with no way out.
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This disease is not so black and white; medical people need to begin seeing that, and treating everyone the same.
I have had medical insurance on and off my whole life. When I was in college I had none, I went to Planned Parenthood for my obgyn visits and birth control EVERY YEAR.
I found out I had AIDS when I was three months pregnant. My husband and I cried. We were horrified to tell people; the fear of telling others was more overwhelming than the fear of having the disease. I worried more about what people were going to say or think, rather than what does this mean and what's going to happen to me.
I began to research; I looked for books, and for someone in Hollywood living with it. Someone to relate myself to. I found it almost impossible to locate a famous woman who people have heard of with it. I have learned many straight people who were diagnosed don't tell anyone.
I think that's where some of the problem is. If you are afraid to let people know you have it, they never know they can GET IT. Someone needs to speak up; someone needs to educate the straight community that this is real and they are at risk. I decided to join the fight rather than let the disease win and shut me up. I am writing a book so one day, someone like me will feel less alone when they are diagnosed.
Christopher Ervin, Development Director, Aniz, Inc., and AIDS Walk Atlanta 2011 Participant; Atlanta, Ga.
My first clear memory of AIDS is not quite 30 years ago. But I can say I've seen the evolution of the care of those living with HIV/AIDS over the past 20 years. I recall in my early years of medical school, doctors still debating on whether they would operate on an HIV patient. Then there was the near farcical ritual of hospital staff gowning up to just enter the rooms. Even though AZT was on the market, the "deathwatch" that seemed to pervade the room. All the while, in the back of my mind I knew this was wrong. It became personal in two ways. The first was when my cousin passed. I had noticed him gradually losing weight, etc. But it didn't dawn on me he was dying of AIDS. He was a close cousin, just spending time with him was all that mattered. Evident when he made a point to take me out for my birthday four months before he passed. Even now, many of my efforts are in memory of him. The second moment was when I applied for life insurance as a surgery intern and it was "highly" recommended I get an HIV rider to "protect" myself. I kept asking myself, was I really at risk? I understood the necessary precautions, but where was the common sense approach? It was that time, holding the hands and sitting in the rooms of many patients that I made the choice that there has to be a better way to treat those who are HIV positive with dignity, humanity, and respect that we are now witnessing.
Ingrid Floyd, Executive Director, Iris House; New York, N.Y.
I was young when the first report of what would become known as AIDS was released. I first learned of AIDS in high school as more reports of persons dying from AIDS were making headlines. At that time people didn't discuss how persons were becoming infected and hence it was only associated with men who had sex with men. Therefore, you disassociated yourself with the disease.
AIDS really became a reality when in college Rae Lewis-Thornton came to speak to a group of students. Here was a beautiful African-American woman telling her story of how she was infected. Then and only then did I start to understand it wasn't just gay white men but beautiful Black women who were also becoming infected with this disease. At that point I think everyone who heard her testimony began to think about their own actions and how they may be putting themselves at risk and what behaviors they needed to change to prevent infection.
She still symbolizes after all this time that women matter!
Fogcityjohn, Attorney and TheBody.com Blogger; San Francisco, Calif.
I didn't find out about AIDS in 1981. I wasn't aware of either the report published in MMWR or the first New York Times article. I'd only just come out, and so I wasn't really connected to the gay community or to information about it. I learned of AIDS about two years later, when I read an article in a magazine about the strange new illness that seemed to be killing gay men. I remember feeling a sense of dread and wondering whether this new disease would affect me. Little did I know that it would change the entire course of my adult life.
Olivia Ford, Community Manager, TheBody.com; Brooklyn, N.Y.
My first memory of clear awareness of AIDS dates back to the summer of '89. At summer camp, playing in a group of kids, a drop of one's spit landed on the arm of another. The "victim" shrieked, "Ewww, I'm gonna get AIDS now!" The fact that this disease I'd heard about in snippets of news programs -- that I knew had claimed my mom's work friend, author of one of my favorite picture book series when I was small; and that I'd heard my much older cousin was sick with -- had become the new "cooties" solidified for me the connection between AIDS and irrational terror.
Luckily, seconds later the spitter retorted: "My mom's a doctor and she says you can't get AIDS from saliva!" so this was also my first experience with successful HIV education. I assume Dr. Mom had witnessed enough AIDSphobia by that point that she'd trained her child to counter it by repeating AIDS facts, loudly and often.
Daddy Dab Garner, Founder and CEO, Dab the AIDS Bear Project; Wilton Manors, Fla.
WOW. This question brings back many hard and sad memories. By June 5, 1981; I had already given my first teddy bear to a close friend who died from Kaposi's sarcoma in San Francisco in March 1981. I guess that is why I find it strange that June 5th is the CDC date for HIV. Little did I know that a couple months later I would lose my first love to complications from what was then called GRID (Gay-Related Immune Deficiency) and PCP (Pneumocystis pneumonia). Not being able to visit either of them in quarantine (and later being in quarantine myself) made their deaths even harder and was the reason I started giving friends teddy bears that eventually were named Dab the AIDS Bears. I wanted them to know they were loved and someone cared. To give them something to hold while they were dying since no visitors were allowed and even hospital staff wore protective garments. While the death of a close friend was hard, it broke my heart to not be able to hold my partner as he was dying in quarantine. I spent 10 days at the hospital while he was dying. A wonderful nurse kept taking my notes and reading them to him. It broke my heart to watch him crying and not being able to hold him.
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Little did I know that I would be one of the lucky ones to survive with HIV when I was first diagnosed 30 years ago. I was told at the time I would not live to see my 20th birthday. But we did not know anything about HIV then, much less CCR5delta32 or other factors which help some of us live longer with HIV while most of our friends were dying. My biggest hope is before we celebrate another decade of HIV that we have found a vaccine if not a cure. I am still hopeful both will happen during my lifetime and we'll be able to look back and say "Remember when people died from HIV and AIDS?" Until then, Dab the AIDS Bear and I will continue to advocate for our community while doing HIV/AIDS awareness, education and prevention.
River Huston, Writer, Performer, HIV Advocate and TheBody.com Blogger; Water Island, U.S.V.I.
In 1981 I had just come up from Mexico where once again I was trying to be a lesbian to no avail (I was there with a woman I was in love with but it just did not work out; I think she said some about my drinking problem but I couldn't hear because I was in a black out) I met Donald Ray Huston on the way and he needed a ride to NYC. I had been living in a van in Mexico and in that same van, which used to say "Refrigerator" but now only said "erato," we headed to NYC. I was 21 years old and had already been out on my own for six years. I had not heard a word about HIV/AIDS or anything since I lived in a van, no TV or radio, really off the grid. The first I heard of AIDS -- or as they called it, GRID (Gay-Related Immune Deficiency), or ARC (AIDS-Related Complex) -- was 1984. I had separated from Donald Ray and was now a dominatrix. I was working with this woman who sometimes turned tricks, and she gave me a copy of Life magazine and said "there is this new disease out there; better use condoms or don't fuck em." I was glad I had changed careers and only had to pee on them or give a good spanking.
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In 1991 I was diagnosed HIV positive; by that time I was sober five years and had not been exposed to any risk. (I was abstinent but I didn't call it that; I just had an allergy to sex. After having made it my profession, there was no fun in it for me.) The same year I was diagnosed, I tracked Donald Ray down thinking maybe he was infected as well. He was and had been lying neglected in a hospital bed in Beth Israel Hospital. I missed him by a day. He checked himself out and killed himself. I suppose that was better than dying slow, alone and powerless. Did he infect me? I don't know or care; I just know I lived in dangerous times in dangerous ways. Maybe I was infected the night we met in 1981, who knows. I am blessed to have survived; almost everyone I know from back then is dead.
Ibrahim, TheBody.com Blogger
In 1981 I was excited to finish my first year in my new school. As a child I never heard about HIV, never knew what it was, never knew it would be part of my life ... I wonder if someone that day told me, there is a new virus out there to hunt you one day, probably I would have laughed ...
Sharon Lee, M.D., HIV Medicine Association Board Member and Executive Director of Family Health Care at the University of Kansas Medical Center, Kansas City, Kan.
June 1981 began my fourth year of medical school. My goal was to become a Family Physician and my plan was to serve poor people. The reports had little impact in K.C. A bit later a school friend, Myla, told me she thought she had seen a patient with it; my reply was that the disease was such a ?zebra?, I would be unlikely to see any cases.
The start of a practice deliberately providing care for the uninsured led soon to a young man who came in too weak to come up the office stairs. It took little more than a glance to have complete clarity about his diagnosis. I called a specialist for help. The doctor declined, saying that there was no need for a consult, as the patient was dying. That began my journey of caring for people with AIDS. In the early years, I learned not to go to the funerals, in part because I could not leave the practice so often.
Elizabeth Lombino, M.S.W., TheBody.com Blogger; New Jersey
I was very young when AIDS was first discovered, so I did not fully understand what was going on. However, I have clear memories of the feeling of political and moral tension of the time. I didn't understand it, but I could feel it. Then, in the early '90s, I saw the AIDS Quilt for the first time. Countless panels were set up in the gymnasium of my elementary school. The image of endless coffin-sized quilt pieces decorated by loved ones is one of those memories that will never fade from my mind. My heart broke for them and for all the panels made in honor of those who died alone. In that moment, all I could think about was the political and moral tension -- and wondering why this was the focus when people were dying. It was a powerful moment for me and has led me to where I am today.
Vickie Lynn, M.S.W., M.P.H.; Tampa, Fla.
On June 5, 1981, I was a junior in high school. I vaguely remember hearing about a disease that was killing gay men; they called it "GRID.". It wasn't until October 1989, when I was diagnosed with HIV, that I took notice. I felt like the only woman in the world with this disease. I was working at a stock brokerage firm and had dreams of being a stock broker, getting married and having children. I was scared and alone; there weren't any medications to help me. At the time I couldn't even find a doctor who was willing to see me. "We don't see people like you; we don't know what to do with people like you, don't come back here." We have come a long way and I am still here -- lovinglife!
Kevin Maloney, HIV Advocate and TheBody.com Blogger; Upstate New York
1981 was a happy time in my life. I was 5 years old, and my favorite toys were my Pound Puppy, Glo Worm, and my new bike. This was also the year I started kindergarten, and I still remember my kindergarten teacher Ms. Cambell and learning my ABC's via the "Animal People." ... I was oblivious to what was happening in the big world around me. Aren't we all at that age? My parents did a good job at shielding me from all the sorrow and negativity that was going on in the world ... hoping my future would only know joy and happiness.
As I was turning 5 and continued growing up in the '80s, AIDS began to rear its ugly head and spread with vengeance ...
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Krista Martel, Director of Online Services, The Well Project; Brooklyn, N.Y.
I became aware of HIV in the mid-'80s, I think mostly through the media coverage of Ryan White and his battles to attend school. It must have had an impact on me because when my creative writing teacher assigned us to write a story from a child's perspective my freshman year in college ('89), I wrote it from the perspective of a child with AIDS, discussing how I hated to see my parents so upset all the time, and not understanding why my friends wouldn't play with me anymore. I later found that paper after my sister was diagnosed in 1994, which really hit home, since my family was experiencing much of what I had written about.
Maria T. Mejia, Small Business Owner, HIV Advocate and TheBody.com Blogger; Miami, Fla.
In June 1981 I was 8 years old ... a little girl that was healthy but still going through her traumas of childhood. Little did I know that I would become infected with the virus at the age of 16 from my first boyfriend. I thought this was a disease of homosexuals, prostitutes or IV drug users.
HIV/AIDS in my eyes after 30 years is being minimized to nothing! As I tell young people or anyone that wants to hear: HIV/AIDS is not a death sentence anymore, but it is a Life sentence!! You get no breaks! The medication is harsh on our bodies and is not as simple as "I will take a pill and look good like you"!
Please love yourself, test yourself and remember: HIV/AIDS has no face.
Rusti Miller-Hill, Trainer, Cicatelli Associates, Inc., and TheBody.com Blogger; New York, N.Y.
Where was I when AIDS first came on the scene? I remember looking at the television thinking "Ohmygod this can't be" ... I saw Ryan White and his mother and heard of their struggle just to be acknowledged for who they were as a family. I never thought that this would have an impact on my life other than hearing about it on the news. Magic Johnson and I found out around the same time! I was diagnosed in January of 1991. The word on the street was that if you became infected you died almost immediately. I watched friends die, attended so many funerals. I spent the first year in deep denial.
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Candace Y.A. Montague, D.C. HIV/AIDS Examiner and TheBody.com Blogger; Washington, D.C.
Where was I on June 5, 1981? I was probably playing on a school playground at Fletcher-Johnson Educational Center in Southeast D.C. enjoying the waning days of my kindergarten career. I had no idea that a deadly disease was inaugurating 3,000 miles from where I stood or that it would come to debilitate my Ward 7 neighborhood like a long-range missile. I didn't meet HIV until 1989 when the American Red Cross had training at my junior high school about what it was, how to contract it, and how to protect myself from it. I'm sure that the lessons I learned from that training saved my life when I became sexually active years later (not that I've always been a good girl). I wasn't aware of this "big disease with a little name" in 1981. But I know it well in 2011 and I intend to see it eradicated in my lifetime.
Pamela Neely, Co-Director, Nassau Inmate Advocacy Group; Brooklyn, N.Y.
Before education was available, a lot of my friends was dying at a high rate and no one knew what was happening. People were dying and being label as having pneumonia. It was very sad because once you were diagnosed, a person didn't live long. You actually watched the stages a person went through, almost as if they went back to being a child. Their hair became straight and baby-fine soft, they walked bent over and you could see that each step brought about more pain. AZT was the only medication available and even that caused more problems than it helped. People were a lot crueler. I am glad to see more advocates and educators out here fighting for the cause. I am one of them.
Troy V. Ray, HIV Prevention Team, Hartford Gay & Lesbian Health Collective; Hartford, Conn.
I remember that day like it was yesterday. I was in the eighth grade, in a state of confusion about my sexuality. I was overhearing a conversation on the school bus about this thing called AIDS (The Gay Disease). The gay part is what caught my attention, 'cause between you and me, I ain't one to gossip, you did not hear this from me, but I dibbled and dabbled every now and then. Back then I was not looking at the news, getting reports on the progression of the disease, I was just a kid. I was just another person with his head in the clouds. I could say "if I knew back then what I know now," but what good would that do me? Now I know what to do, and what I intend to do with the information that has been provided to me over the past 30 years: "Remain Teachable"! There is more to know about what I already know.
ScotCharles, Retiree, Gardener, Painter and TheBody.com Blogger; Los Angeles, Calif.
I have always been an early riser. I love the freshness of the world in the morning and I like listening to National Public Radio during my breakfast. As clear as a bell 30 years later, I remember an announcer and commentator discussing the previous day's CDC report. My partner and I were going to a dinner party that Saturday evening; and, it was at that party that I first talked about what would become the AIDS Crisis. Everyone except me though it was nothing to worry about; but the NPR spot had convinced me the mysterious outbreak of PCP in L.A. was serious.
As the dinner party broke up, we began to talk about which bar would be hot that night. I asked if no one was concerned about catching the mysterious plague I had talked about during dinner. I shall never forget a good friend, a doctor, said, "No, I'll just take some antibiotics in the morning." He died of AIDS in 1991.
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Nelson Vergel, Founder, Body Positive Wellness Clinic and Program for Wellness Restoration; Fitness Expert and TheBody.com Blogger; Houston, Texas
I had recently graduated as a chemical engineer and had flown from Montreal to work in my home country of Venezuela. I was also coming out as a gay man. When I heard the news, I immediately thought it was a cancer caused by party drugs and promiscuity. Little did I know that two years later, I would get infected in Houston while attending a meeting. And my life completely changed.
Loreen Willenberg, Founder, Zephyr L.T.N.P. Foundation, and TheBody.com Blogger; Sacramento, Calif.
On June 5, 1981, I was 27 years old and living in Minneapolis. My attention was focused on surviving cervical cancer and saving a disintegrating young marriage, and not on the "new illness." HIV/AIDS appeared on my radar several years later, when I was a divorced woman and dating again in northern California. I tested negative for HIV in 1988, the same year the courageous and 16-year-old Ryan White testified in front of the U.S. Congress, and worried about friends who were struggling from the toxic side-effects of AZT. Sadly, many of them did not survive. Four years later, when the CDC reported a sharp increase (130 percent) in the number of AIDS cases among heterosexuals, I discovered that I, too, would be included in the count of HIV infections for 1992.
Photo credit: Bob Roehr
Danica Wilson, Prevention Specialist/S.W. Missouri L.I.F.E. Coordinator, AIDS Project of the Ozarks; Springfield, Mo.
Information about HIV made its way slowly into my Midwestern hometown. I can't say that I remember the CDC report or consciously knew anyone with HIV/AIDS at that time. What I do remember was a brief, almost-hushed mention of the strange illness in my high school health class. That was my "education" before becoming an adult and volunteering with AIDS Project of the Ozarks. That is where reality set in about the devastation that was the mid-1990s HIV/AIDS experience: individuals and families shunned, medical inadequacies, deaths I would wish on no one. From that time there is a fella fixed in my memory, who's long since passed away, who was the recipient of household and personal goods; I transported these supplies to him. Like so many folks at that time, he had come home to die and, thankfully, his mother was providing shelter and care. He is the example I reference for "the bad old days," when human beings were reduced to walking skeletons, when someone had so little strength and hope left that he could barely come to the door. He is also the guy I rely on to remind me of why I do what I can in this job. For all those gone and all those still fighting, I wish you peace ... I hope we never see days like that again.
Jeannie Wraight, HIV Treatment Activist, Founder, HIVHaven.com and TheBody.com Blogger; Bronx, N.Y.
I was 13 when I first heard of AIDS, or GRID as it was called at the time. My first memory of it was sitting in front of the TV with my parents and brother as the newscaster told of a mysterious illness that was striking down gay men in New York City and San Francisco. I remember thinking "how awful" and then went on with life as I knew it.
My next memory of the AIDS crisis was seeing ACT UP demonstrations of large numbers of really pissed-off people chanting and waving signs. Little did I know at the time that in the years to come I would be one of those pissed-off people demonstrating and facilitating ACT UP New York meetings.
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I was 19 when I met my first person with HIV. I was living in a therapeutic community (TC) having successfully run my life into a brick wall with addiction. It was easy to tell who was positive because if you were you'd get an hour a day of bed rest which consisted of a nap on one of the living room couches.
For some reason, even at that time, I had no fear or concern about being around someone with HIV even though we knew so little about it. I was new to the TC and didn't know most of the people in the house yet. I stopped at a couch where a guy I had talked to once or twice was laying and asked him if he was sick. "Just tired," he said; "I have AIDS." I wanted to cry I felt so bad. Here was this young, sweet guy and he may have well said "I'm dying" because that's basically what I heard, and I'm pretty sure what he meant. He was so open about it and talked to me about having the virus for a few minutes in a sort of teacher way. It turned out quite a few of the 100+ people who lived in that TC while I was there were positive. I got to know and care about every one of them and that experience during the early days of the AIDS crisis formed my view on HIV. It's an illness. Plain and simple.
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