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Personal Perspective

Double Stigma

Fall 2009

Personal Perspective: Double StigmaI have fond memories of my July birthdays as a kid. Those hot Texas summer days were spent leisurely in my grandparents' backyard making homemade ice cream beside the plum tree weighted down with fruit. Now that I have become officially a "senior," I look back on those times with a mixture of sadness and longing. My time has passed so quickly it is hard to believe that I have had AIDS half of my life.

On turning 50 I was perplexed about exactly how I was supposed to feel. I struggled with the feelings that I am very lucky and privileged to have survived AIDS twenty years, but in reality I still just felt ... old.

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Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
See Also
Read More Articles in the Fall 2009 Issue of Achieve
More News on HIV Stigma and Discrimination
Spotlight Series: HIV Stigma & Discrimination
What Does HIV/AIDS Stigma Look Like in Your Life?

Reader Comments:

Comment by: pozinct (New Haven, CT) Mon., Dec. 21, 2009 at 7:26 pm UTC
Thanks Matt for your aticle. I was recently discussing growing older and HIV with my cousin expressing many of the points you espoused in the article. I must admit however upon finishing your article and reading the comments, I must give praise also to John-Manuals's view. Soon to be 59 and a 20 year HIVer, when I look around me and see other men my age and younger, both gay and straight, I realize I am probably having a better life than many. Not so much because I am any way special. It certainly isn't because I have money, exceptional good looks or health; but after years of feeling sorry for myself and worrying about my status, I decided to just "seize the day" and enjoy my freedom and zest as best I can. Yes I am very lonely at times but instead of mourning the passing of my days and chances, I just have been broadening my network of friends and acquaintances, trying new things and in general not giving up what optimism there is. Perhaps it was just my recent encounter with liver cancer or perhaps my recent encounter with a relative who despite their youth, was hating their life so much. As I look around to others my age or considerably younger, I realize HIV or not, old or young, an exciting life is in our heart and spirit, not our bodies. As for today, this matured bodied, youthful minded "stud" decided to collect what little cash he could find and head off to Cozumel where tomorrow I will try scubbing diving! Hell if I am gonna die anyway, I might as well sleep with the fish for awhile! Besides, maybe some hot number will see me in my slimming wet suit and take me for a dive! If not, maybe I could try sky diving! Best to all in their quest for happiness.
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Comment by: Harry (New York) Mon., Dec. 21, 2009 at 7:17 am UTC
Thanks for setting it down right. I have been married almost a half century now, age 75, with two, grown, happy, and productive children. I knew I was gay when I was about 4 years old. I am of a generation who married as was expected of them without serious consideration of life-style alternatives. As it turns out, I am happy with the choice I made. For me, anyway, a woman makes a better home partner than a man.
Most of my life was filled with self-hate of my gay identity, but when you get older you get smarter, and I now consider my gay orientation a birthright. Just this year I have begun, as my wife puts it (I am not on the Down Low), "going for gay" and have cultivated a couple of long term, satisfying relationships with older men, formerly married and with grown children. Keith said it well, " Youth, beauty, power and lust have been put on a podium for thousands of years" (make that "millions"), and as you write, "Gay hook-up sites are rife with the use of blatant language to separate us such as "18-45 ONLY," or "disease-free." Recently to a guy who answered my ad on Craig's List with a request for my stats, I wrote, "(1) You do not ask a lady for her age, (2) I am 40 degrees 59 minutes 27.5994 seconds North latitude & 72 degrees 32 minutes 2.4 seconds West longitude, (3) hit me up.
It goes without saying that we never hooked up. However the peace that comes with being yourself and haveing one or two like-minded buds was worth waiting for.
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Comment by: Wayne (Sydney, Australia) Mon., Dec. 21, 2009 at 2:20 am UTC
I've just utned 50 and yes the community is very ageist. Add to that that I am on a walking stick while I recover from a knee replacement; and I find that the younger gay men avoid me. Some are openly antagonistic.

I don't look old and I have held my age very well (I look late 30's - 40) but becuase I use a stick they don't want to know me.

I've had to have both hips, one knee and one shoulder replaced and the other shoulder and knee have to be replaced too. A combination of long term use of HIV meds and steriod based medications as caused avascular necrosis in 6 major joints.

While I am glad that I have survived where many didn't; growing old is not something I look forward too. The only saving grace is that I have good friends.

As for the twinks. Never mind - they too will age and some of them will not age well. They will still be nasty queens with no friends when they age. Lol
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Comment by: HD (upstate New York) Sun., Dec. 20, 2009 at 10:44 pm UTC
Staring 50 in the face and having been diagnosed when I was 31 I think I qualify here on all counts. There are two points that no one seems to have touched on that I think are very relevant to the topic. One, Living with HIV puts an extra ten years on your appearance, some of us more, some of us less. I am thrilled to be making it to 50. I never thought I would. I just wish I didn't look and feel like I am 60. Two, the age verses youth debate, the biggest loss is the continuity of community. We have lost almost an entire generation and in my opinion it has set us as a community back. I don't expect to "nail a twinkie" but wouldn't it be nice if the twinkie understood more about what we went through for them to be able to be as out as they are now. God knows we still have along way to go to true equality with the rest of the world but the sad truth is that todays gay youth have themselves or us. There is little left of that generation that would have been "hot daddies" and helped to educate and develop the next generation of our community. I know the men I looked to as role models and examples for inspiration were the hardest hit. The loss is incalculable.
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Comment by: John (A small place in the countryside) Fri., Dec. 18, 2009 at 5:34 am UTC
I'm 55 and HIV. My partner is neg. I've been positive since 2000. I started hurrying quickly to make all my old dreams true. Well, we've ended up in a house in the countryside surrounded by beautiful fields, trees, and streams. Our valley is very isolated. It takes an hour to drive to the nearest hospital and large town. But here's the interesting contribution I can make. Our valley is dotted with old couples. We're the only gay couple. No one has been discriminative or insulting to our faces and over half have been very welcoming, inviting us to the odd communal event, some couples asking us to dinner. We have come to know all our neighbours - some much more than others. At 55 we are the youngest couple here! The oldest couple are in their 80s, and THEY are our closest friends here. Nearly all the other couples are over 60. Apart from a few farming couples, everyone else is retired. It has been fascinating for us observing how all these "old people" function. They don't function any differently from us, except that when summer comes and they have family to visit, we have only friends to visit. The other day we had a wonderful dinner in the company of the two 80-year-olds. While I was alone in the kitchen with the wife she confided to me her anxiety about going on and on. She said, "These days they won't LET you die!" She confided that she had looked into which local plants they might use to let themselves go when they feel the time is right. (Their son is giving them a laptop soon so I will show them how to use Google.) Another couple, our closest neighbours, are in their late 70s. The wife has indicated that she has already taken steps. She has a little bottle of something which she has acquired through her family (they're all doctors) and she and her husband will be knocking that back when they decide the time is right. This has been astounding for us to witness. Meanwhile we watch them doing much the same sort of things as we do.
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Comment by: Frank (Houston, TX) Fri., Dec. 18, 2009 at 1:01 am UTC
I too am a long term survivor. I was diagnosed in December 1984, I was 31 and my little brother was diagnosed in June 1985. He passed on in September 1993 a week before his 27th birthday.
Now at 56 I also feel time has rushed by to fast. From 1999 t0 2004 I worked as a House Manager at a Recovery center for the HIV + and homeless men. After the organization closed due to mismanagement of funds I started caring for a lady with Alzheimers and dementia. . Now it is 6 years later and I am still taking care of her. I have NO social life except for my two dogs. Every two years I try to take a week trip to NC to visit my other brother and Mom and Dad. I am now realizing that I have short term memory problems and cognitave difficulties and seizures. Thanks for spell checkers, and in school I was always a winner in spelling bees. In addition I am dealing with low bone density, lipo bph hypertension diabetes and a compression fracture of th L-2 vertebrae. I take 13 medications a day some twice along with Truvada and Viramune. My third coctail since diagnosis. HIV is not my main problem, the results of the rapid aging process is my main concern. I to have lost many friends in the late 80's,early 90's. But I will still fight and hope to have a peaceful time at 60. I used to attend group therapy, which helped me cope in the past. Now I bought me a place in the country and hope to retire there after my patient passes. I hope for all that the medicare and medicaid continues to exist. I am grateful to our county hospital district and the wonderful dental clinic and eye care specialists we are blessed with in Houston. Without their mostly free services I probably would not be alive today. One last thing, take your HIV medications and hope and fight for a cure. HUGS to all!
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Comment by: John-Manuel (Norwich, CT) Thu., Dec. 17, 2009 at 8:56 pm UTC
I understand where Matt is coming from-and I also find a lot of helpful wisdom in the comments posted here. I've made a career chronicling the HIV epidemic and its effects on the lives of gay men and the gay community. I was diagnosed HIV+ myself in 2005, three weeks after my 47th birthday. I left DC in 2007 and returned "home" to the boondocks of eastern Connecticut. It's been shocking, and discouraging, to find the level of HIV-phobia among gay men here. Yet maybe not so surprising since there's a generally low level of advanced education and worldly sophistication in general here. But living here has confirmed what I've long believed, and tried to practice myself, and that's this: We need to "take what we like and leave the rest" from the so-called gay community. We need to piece together what we take from it with what we take from other areas of our lives into a life of meaning and purpose. I've observed time and again the men hanging online hoping to "hook up" are really hanging online because they have nowhere to go or no one with whom to go there. They're lonely. We're lonely. We lost so many of our friends at a young age, and we've carried that grief into our middle age and beyond. But we don't talk about it, don't have chances to share it and be comforted from others who have shared similar losses. Hal Kooden wrote in his wonderful book about gay male aging GOLDEN MEN that middle-age gay men may find we need to detach from the youth-obsessed gay culture, to make our own way, base our sense of personal value on our wisdom and knowledge rather than on our receding youth. Many of us, maybe most, don't have children who help us mark the passages of our lives and give us a sense of continuity over time. But we're in for a hard, hard time if we look to young gay men-or those who happen not to have HIV-as the standards against which to measure our worth. They likely don't have the wisdom and survival skills we have, and those things are worth a lot.
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Comment by: jim m (boston) Thu., Dec. 17, 2009 at 5:10 pm UTC
"Older HIV-positive gay men face further and increased stigmatization within the gay culture where youth, good looks, and a perfect body are valued more than being whole"
What a lot of bunk! I'm 58 years old, widowed and it's been 21 years since my diagnosis. I've been reading this kind of self pitying/hating crap my entire life. The "so-called" stigmatization based on age and looks is hardly unique to the gay community. If it seems that way it's because, unlike straights, we don't form lasting, life long relationships. There are lots of reasons for this that are not necessarily our fault, but it's not because we are any more youth/looks obsessed than the society at large. I mean really, have you ever watched tv or gone to a movie or walked around a mall? So 25 year olds don't want to hang out with you. Boo hoo! When you were 25 how many 50 year olds did you want to hang out with? How many straight 25 year olds want to hang out with the over 50 set? They live in a different world and know a different reality than old goats like you and me. I'm single and I'm lonely, but you know what it's not because of my HIV and it's not because of my age and it's not because young gay men are any more shallow than anyone else. It's just the way my life has turned out and that's got more to do with me being me than with anything else.
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Comment by: Emmett (San Francisco) Thu., Dec. 17, 2009 at 3:35 pm UTC
Great article that fell apart at the end! Manageable, I doubt that as I grow older and find the body shape changes, fatigue, thinning skin, elevated cholesterol levels, fatty liver, cognitive decline to be manageable at all, I would rather say it is horrible and a full time job instead. I would hate for a younger person to feel that HIV is a manageable disease, it is a horrible disease that should be avoided at all cost. All the study's coming in on HIV and aging do not look so good, they are saying that we are in actuality 10 years or older than are real age and our tcells while increasing are similar to those of our senior brothers and sisters for those of us that have had this with us for many year. Let's not forget what this disease does to us socially and mentally, that would add up to years of extra stress that doesn't do the body good. All and all I enjoyed your article much and wanted to add my thoughts for younger people thinking of having unprotected sex.
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Comment by: John Ira (Chicago, IL) Thu., Dec. 17, 2009 at 2:57 pm UTC
I must say, you have a beautiful way with words. We of the new "older generation" must realize that age "just is." You can't fight it. It's like taxes. I was raised by older parents so perhaps I have a different perspective. Age was a state of mind for my parents and they were definitely young at heart. My father wrestled with me and watched cartoons. My mother was active at my schools. They wore their age as a badge. As I seemingly gallop towards 50 (Now 47) I am happier with myself than I ever have been. If my looks are fading, that's OK. I have a wonderful partner (a year younger than me so he's still chicken in my book) two beautiful dogs and a new business. If I'm seen as "older" that's OK. I am "older". I've was diagnosed in 1988 and it changed my life. I eventually went on disability and focused on volunteer work. I stared death in the eye a number of times, cussed a couple of doctors and was discharged from a hospital once because, well, I was mean. I never thought I'd live to see the new century. And then I got better. It was a surprise gift giving a punctuation mark to the deaths of my then partner and mother. I went back to work and got back to living. So here we all are. Let's form a club. A POSITIVE AGE. We could have guest speakers like cosmetic surgeons and people to talk about 401K's. And strippers! What would a gathering of the new "older generation" be without strippers? There'd be no crystal meth but you could get a martini and a couple of Advil for your sore back.
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Comment by: Barry (Los Angeles) Thu., Dec. 17, 2009 at 2:30 pm UTC
Living in the city of "eternal youth," I completely relate to what you've written. It sounds like mobilizing and demanding the future we envision is great, however, you end your article with that, yet don't specify what that means. To me, by not offering ways to mobilize makes your article just one more of those complaints aired frequently here and on other HIV sites.

I suggest articles that offer solutions. We are well aware of the problem!
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Comment by: Yuri (Queens, NY) Thu., Dec. 17, 2009 at 2:16 pm UTC
Me, We, I - it is all sounds so regurgitated and uninspiring. All these exortations about stigma and neglect by gay youth betray Matt's own reliance on the importance of the same gay dogmas he aims to slay. When we were young and not sick we would have just cared as much about the sick, the old and not-so-old. Rather than fighting our own with all their diversity of opinion and sense of entitlement, let's switch our discussion to what we have learned from the past and propagate the wisdom we acquired in our travails. Let's keep on living, fulfilling our own promise, create our own meaning without tring to impose our losses on the new gay generation. Bitter and grumpy old gay men are no different from bitter and grumpy men in general!
I do not care about stigmatization even though I very much fall into the category purported to be stigmatized. If you don't spend time on dating web sites or hanging out in bars for the younger set, then you would not care about the "stigma". And why should I, if I do not parade myself in the environment suitable for pursuits of my youth?! Choose your friends, old and young from those who care about you and not about your looks and plan to enjoy every wonderful minute of this life instead of worrying and chastising others about their right to choose what they like. There is nothing wrong with someone wanting to meet only 18-45 and disease free. We all did the same when we were young and healthy. A lot of our current activism centers on the desire to be like everyone else, including the marriage and service in the army. And in that all other dissenting voices get shouted down. Perhaps older gays can explain what makes us unique and distinct, including lack of interest in killing and getting killed on the battlefield, or going to the altar. Instead we ought to look for ways to derive the benefit from our hardy experience and not insisting on getting a credit for suffering. Instead, Be yourself, be different, and enjoy life!
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Comment by: Keith (Canada) Thu., Dec. 17, 2009 at 1:53 pm UTC
Thank you Matt for taking the time to reflect on this journey of life. I share similar concerns about the emptiness of "gay culture". Trying to fit into that plastic vacuous lie of gay frivolity and destructiveness we've lived and been fed as a lifestyle - especially as we age - is ridiculous. A "reflection" of the post sexual revolution indulgent decades should cry out - 1)stop the insanity and 2)there is a time when one should leave THAT party. However - it doesn't.

As I age - I reflect with my friends who age. The issues of aging are universal. More articles about being HIV+ and aging are appearing much like the stuff of the aging baby-boomers in other cultural spheres.

Let me ask you this: Why do we have to measure ourselves up to the confines of "website preferences" or glossy images of youth in order to feel like we belong. We have no moral duty to "tell our community that this behavior by our own is offensive and should not be tolerated" when we have perpetrated and indulged in this myth of youth and beauty post-Stonewall. Youth, beauty, power and lust have been put on a podium for thousands of years.

The fact of the matter is we are aging. You write: "This stigma can only create further isolation and loneliness, leading to depression and substance abuse." I went to all these "dark places" long before I reached midlife. Labelling ourselves as "aging HIV+ gay men" will only keep us down if we don't grasp the new paradigm and ask - "What is really important at this stage in the game?" Aging is not a death sentence. Look around you at similar age (and older) folks - gay or straight - who are living full lives. They probably don't measure themselves against their own earlier experiences let alone the youthful decadence of the current age. Although my own 98 year old grandmother said "Aging is for the birds!" she also said "Aging is a blessing - have fun with it!" The harder we try to remain back there - the more troubles we'll create here.
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Comment by: Steve S. (Memphis, TN) Thu., Dec. 17, 2009 at 12:53 pm UTC
Good Article. I understand completely. Being diagnosed with HIV in 1992 & turning 61 Yr., it is definetly a hard road to travel. At least we lived well in the 60's & 70's, had much more "Fun" than the younger people do today. Of course, we had no idea it would catch up with in the 80's.
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