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Kergan Edwards-Stout

Views & Voices

It’s World AIDS Day. Does anyone care anymore?

Friday, November 30, 2012

On March 5, 1995, the day I turned 30, I admitted my then-partner Shane Sawick into the hospital. He would not come out alive, dying just two weeks later, on March 22.

While AIDS was the war he battled, he was ultimately done in by a skirmish with PML (Progressive Multifocal Leukoencephalopathy), a rare but usually fatal disease, which quickly took away Shane’s ability to speak, move, or even blink at will, though his brain continued to think, and process, and feel.

Shane Sawick

It was devastating to watch a loved one undergo such a debilitating experience, and yet that act, of being both lover and caregiver, thoroughly transformed me as a human being.

Indeed, I would not be the husband, father, writer, or person that I am were it not for that period of crisis during which my partner and friends died.

As we head towards World AIDS Day, I find it perplexing that few seem willing to embrace, or even mention, the epidemic which so greatly impacted and altered the LGBT community. What is it about that era that frightens us so?

The easy answer might be that disease and death make people uncomfortable, which, to some degree, is understandable. Prior to Shane’s death, my best friend of eight years and I were inseparable (I’ll call him Pete.)

At the time, I couldn’t have imagined a better friend. Pete made me laugh, kept me company, and ushered me through my West Hollywood “coming out.” Once Shane got sick, however, Pete disappeared. He never called, or came to visit us in the hospital, despite knowing that I was there 24/7.

Whenever queried by friends as to his absence, Pete would say, “Oh, you know — me and hospitals. I just don’t like the idea of sickness.”

It wasn’t until the day of Shane’s memorial that I next saw Pete. He came up, noting “Great service!,” before the next words came out of his mouth: “Wanna hit Happy Hour later?”

Needless to say, I chose to end that friendship, as well as others in which people could not grasp the emotional magnitude of what had happened to me, and others like me. The depth of my experiences caused a change within, which required a new support system willing and able to tackle the “hard stuff,” no matter how unpleasant.

For some, the era of losing friends and loved ones has been difficult to revisit, due to the emotional toll taken.

Many have gone to great lengths to separate themselves from the pain, moving from the most-hit urban centers to smaller, more rural towns. Others have gone into emotional hiding, losing themselves in drug or drink, or in simply shutting down, so as not to feel the ache of such loss. And some have, by necessity, focused on rebuilding their broken circle of friends.

New causes, such as marriage equality, have replaced AIDS as our community’s priority, and it is hard to argue that rallying for wedding cake isn’t more fun that protesting for HIV drugs. Still, we should not have to choose between the two.

These days, activism for many means little more than clicking “like” on a Facebook post. While thousands stepped into the streets in the aftermath of Prop 8, we’ve not seen anything on that scale for HIV/AIDS in years. At what point did we become complacent? Is having a drug that makes the disease “manageable” really all we want? What happened to a cure — or a vaccine?

Today, people still die from AIDS. While drug advancements have substantially decreased that number, it has also created the false-belief that contracting the disease is essentially meaningless. To some, taking one pill a day is an easy trade-off to having to wear condoms.

Most disturbing, however, is the sheer number to whom AIDS just doesn’t matter, having relegated it to a page in history. When I mention having lost a partner or friends, I’m most often met with a blank stare or a cursory nod, with no real emotional acknowledgement of what that time meant, and continues to mean.

During the AIDS crisis, the LGBT community rose to the occasion, stepping in to take care of our own when the government, pharmaceutical companies, and other organizations couldn’t — or wouldn’t. LGBT people exhibited incredible bravery, tackling huge monoliths with acts of daring creativity and passion. Were it not for our take-no-prisoners approach, we would not have the HIV drugs we do today.

The crisis temporarily brought together both genders, as women stepped into vacant leadership roles and helped those stricken by acting as caregivers.

Today, that gender divide has returned, with little reciprocity from gay men for the causes dear to lesbians, such as breast or cervical cancer. In many ways, we’ve gone back to being strangers, with a debt left unpaid.

Other communities, devastated by tragedy, have managed to turn such markers into rallying cries, and the LGBT community must find a way to do the same with AIDS.

Just as the Jewish people dealt with the Holocaust, and the African American community responded to slavery and the civil rights struggle, so too must our community find a way to embrace that era, fully honoring both those we lost and what we gained.

For we did gain much.

We learned that, far from being the weak and passive individuals many of us had been stereotyped, we actually had strength, passion, and guts, and we fully demonstrated that to the world. We took on “the powers that be” and created real, tangible change. We literally bloodied ourselves for the cause, and yet today, speaking of AIDS feels almost taboo.

Does that have anything to do with the disease being sexually transmitted?

Having worked so hard to combat the myth that being gay is to be “sick,” did the emergence of a sexually transmitted disease take us back to a place of shame? Does that shame still linger?

To be clear, I am not remotely nostalgic for the days of the AIDS crisis. I lost too many, and it hurt too much. But at the same time, I’m thankful that I was able to play a part in helping to educate others about HIV, through my work at AIDS Project Los Angeles.

I’m grateful to my dear friends who allowed me to be with them during their final days.

I’m profoundly changed, for the better, for having ushered my partner Shane to his death. And I’m forever in awe of the efforts our community took to respond to the crisis in unimaginably creative and lasting, impactful ways.

I just wished others cared as well.

© Kergan Edwards-Stout.
For more by Kergan Edwards-Stout, click here to visit his blog.
Opinions and advice expressed in our Views & Voices columns represent the author's own views and not necessarily those of LGBTQ Nation. We welcome opposing views and diverse perspectives. To submit a article, column or video, contact us here. Due to the volume of submissions received, we cannot guarantee publication.

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37 more reader comments:

  1. i care for those who suffer

    Posted on Friday, November 30, 2012 at 5:25pm
  2. No, judging from the behavior of the 2012 Gay Male community, the last 30 years has been forgotten. God help all those “BB ONLY” BOYS out there should “Modern Medical treatments fail”…

    Posted on Friday, November 30, 2012 at 5:26pm
  3. Yes, I care

    Posted on Friday, November 30, 2012 at 5:28pm
  4. i care

    Posted on Friday, November 30, 2012 at 5:28pm
  5. I hate to say but no, no one under 30 gives an ish about it

    Posted on Friday, November 30, 2012 at 5:29pm
  6. Can’t be entirely true….I’m 29. LOL

    Posted on Friday, November 30, 2012 at 5:31pm
  7. i do

    Posted on Friday, November 30, 2012 at 5:33pm
  8. I still very much care and wish a cure could be found for it

    Posted on Friday, November 30, 2012 at 5:35pm
  9. Yes.

    Posted on Friday, November 30, 2012 at 5:38pm
  10. I do and I’m 20. I’ve cared about it since I was first introduced to it at 9. So Bill, don’t assume nobody under 30 doesn’t care about it. I’m actually vert passionate about it.

    Posted on Friday, November 30, 2012 at 5:40pm
  11. Very*

    Posted on Friday, November 30, 2012 at 5:40pm
  12. I’m 17 and I care. So do many of my friends. I hope that the suffering of those who live with AIDS and those who died because of it isn’t forgotten. Gay youth today just need to be reminded of what generations before them fought through (AIDS epidemic, the fight for liberation, etc.).

    Posted on Friday, November 30, 2012 at 5:43pm
  13. I care ppl need to take this seriously the number of ppl infected has grown studies show ages 13 -25 are walking around with aids and don’t know it I’m glad I got tested this year 6/24/12 negative :) planning on getting tested again even though I haven’t had sex in awhile better to be safe then sorry

    Posted on Friday, November 30, 2012 at 5:45pm
  14. I care because I promised a friend I would never forget. RIP A.W.

    Posted on Friday, November 30, 2012 at 5:50pm
  15. I care because ……….

    Posted on Friday, November 30, 2012 at 5:54pm
  16. Anyone can get AIDS educate yourself. I care very much!!!! I am way into my 60′s.

    Posted on Friday, November 30, 2012 at 6:10pm
  17. We at the University of Alaska Fairbanks care. Student activities office is having a three day event. They got part of the AIDS memorial quilt to be shown on campus, including a piece that is a memorial for the first man in Alaska to die of AIDS. The whole thing is very moving and many people have taken time to stop and look and ask questions and,express interest in the guest speaker tomorrow as well a candlelight vigil tomorrow which means a lot here because it gets dark so early and us currently about 30 degrees below 0.
    We care.

    Posted on Friday, November 30, 2012 at 6:11pm
  18. The Clinton Family For One (or 3) & The Obama Family. Personally, i am at 10.5 Yrs & Counting. I Care.

    Posted on Friday, November 30, 2012 at 6:39pm
  19. Living with it myself, I obviously care. I still find myself inwardly wondering how many people care anymore though? In my little corner of the world, people used to be more open about their status, there was more discussions, condoms were freely available in a fish bowl at the local gay bar and there were many people in attendance at the HIV/AIDS support groups. Not so much anymore. The local AIDSwalk this year scarcely raised any money or attendance. The condoms aren’t around at the bar. People living with the virus are more closeted than ever and outreach is difficult to the high risk groups. My state has a ban on Sex Ed and pushes the Abstinence Only preaching, even as levels of infection have been climbing. I’ve lost three people in seven months to the virus. This year’s World AIDS Day is a grim one for me.

    Posted on Friday, November 30, 2012 at 7:10pm
  20. I REMEMBER!

    Posted on Friday, November 30, 2012 at 7:37pm
  21. I’ll be quite blunt here. I’m 50 and used to be pretty involved in AIDS activism, having come out and lived through it before it was even known. All my friends and acquaintances (about 25 in all) that were positive died back in the late 80s/early 90s and so today I really dont know anyone personally that is positive. Regrettable I just dont participate like I used to other than small donations here and there.

    Posted on Friday, November 30, 2012 at 7:50pm
  22. We lost our elders as a community. The disease has become the problem of another part of the world in the opinion of the young. It means less visibility and activism. Its like malaria now…something that is deplorable and needs intervention but we dont have a personal vestment in it.

    Posted on Friday, November 30, 2012 at 8:23pm
  23. Umm @Bill.. Not true. I’m 20, and I’ve recognized, and observed World Aids Day every year as long as I remember. When I was part of my high school’s GSA- we use to do something for world aids day all the time. So no not EVERY one under 30 is careless, or clueless about it. But yes, it is a day that is overlooked, and people need to be more aware..

    Posted on Friday, November 30, 2012 at 8:27pm
  24. Stigma is still a problem. Those of us that lived thru the worst of it (being poz) are now excised for our age, as well as being poz.

    Posted on Friday, November 30, 2012 at 9:33pm
  25. My high school’s GSA had $500 for AIDS research worth of care last year. We’re fundraising again next week, so there. Quantitative proof over here.

    Posted on Saturday, December 1, 2012 at 12:54am
  26. Yes very much so. Also my bro has dedicated himself to this disease as a research specialist and campaigner entertainer to Gov’t: Drug Co. audiences. November saw important Debate in Montreal. With enough of a stand as concerned advocates (Big numbers at Walks and media junkets and fundraisers!), we can get HIV support meds covered under msp (or something like that). The immune system can heal the body if the integrity of the organs is tended with with sleep/ healthy food/ foot rubs…in the aftermath of treatment regimens from Hell. I leave 2012 as the year I completed the “Full Meal Deal” of cancer treatments. Let me just say holy shit. I am reminded by your Link to do for weakened community members as my health permits. There is something to be said for mindfulness. There really is an upside : living to release. HAPPY HOLIDAYS EVERY BOODDDY

    Posted on Saturday, December 1, 2012 at 12:58am
  27. Posted on Saturday, December 1, 2012 at 1:42am
  28. I care, though I care just as much for cancer and any other deadly illnesses.

    Posted on Saturday, December 1, 2012 at 4:10am
  29. Out of the 100+ friends that I had, I lost them all, except for 6 friends, to AIDS. How can I not forget?

    Posted on Saturday, December 1, 2012 at 4:18am
  30. Always have always will!

    Posted on Saturday, December 1, 2012 at 11:50am
  31. Quit fucking without condoms

    Posted on Saturday, December 1, 2012 at 11:53am
  32. Yes, some of us do care, very much so.

    Posted on Saturday, December 1, 2012 at 12:02pm
  33. Yes we do, exceedingly so!

    Posted on Saturday, December 1, 2012 at 12:08pm
  34. I very much do care!

    Posted on Saturday, December 1, 2012 at 12:35pm
  35. AIDS has become a business, no reason to produce the cure, more money in sustaining people who have it. Its like having the fox in charge of the hen house.

    Posted on Saturday, December 1, 2012 at 1:27pm
  36. *FACEPALM.

    1. Scientists world wide are still looking for a vaccine or cure. To say it’s a “Business” because it makes money is fucking disgusting and I am ashamed you are part of my species.

    * * * * * * * * * * * * * * * * * *
    **Scientists see AIDS vaccine within reach after decades | Reuters
    http://www.reuters.com/article/2012/07/15/us-aids-vaccines-idUSBRE86E09C20120715
    * * * * * * * * * * * * * * * * * *

    2. HIV/AIDS isn’t a 3 month death sentence anymore. It is a disease that went from an automatic death sentence to a chronic but controllable condition in under 3 decades. No other disease has been contained/controlled as quickly as HIV and it is because of the never ending research of the people you denounce as “Evil” that this is possible.

    3. Stopping the transmission of HIV is a rather simple thing. While it’s always possible that “Accidents” happen, like broken condoms or medical workers/police being exposed on the job, a majority of people that are infected NOW, in the US, in the 21st century are infected because they choose to not take the precautions necessary to prevent transmission. This is why Meth is such a plague in the Gay Male Community…

    It causes men to act out sexually without regard for safety. It is why 58% of new HIV Infections in the 1st world are in the Gay Male Community.

    * * * * * * * * * * * * * * * * * *
    **New HIV Infections Highest Among Urban Gay, Bisexual Men: CDC
    http://health.usnews.com/health-news/news/articles/2012/11/29/new-hiv-infections-highest-among-urban-gay-bisexual-men-cdc

    **Health officials say 1 in 5 new HIV infections occurring young gay and bisexual men
    http://www.nydailynews.com/life-style/health/1-5-new-hiv-infections-occurring-young-gay-bisexual-men-cdc-article-1.1208935
    * * * * * * * * * * * * * * * * * *

    4. The reason why HIV/AIDS is rising in “Women of Color” is because of the different cultures collective homophobia and refusal to use protection. Black Americans and Latinos are HUGELY Homophobic. They’re oftentimes seem more homophobic than Neo Nazi’s and the KKK. So gay men of color go out and have sex “On the down-low” then come back to their Beards and have sex with them without protection, infecting their women with the disease.

    * * * * * * * * * * * * * * * * * *
    **CDC: HIV among Women | Topics | CDC HIV/AIDS
    http://www.cdc.gov/hiv/topics/women/index.htm
    * * * * * * * * * * * * * * * * * *

    Until we stop allowing damaged cultures to maintain their homophobia by just ignoring it or calling it “Racism” or even allowing the belief that because they’re catholic, they’ll not use a condom is the reason for most new infections in the “Colored” community. (I saw “Colored” because all the literature say “Women of Color” and it isn’t just “Women of Color” that are being exposed due to theistic or cultural beliefs.)

    Posted on Saturday, December 1, 2012 at 1:45pm
  37. I’m so thankful my friends aren’t disappearing off the face of the planet like they were in the 90′s. That was a traumatic time to be gay and watch the world wasting away around you. People feeling guilty for being well so they go out and catch you t on purpose to “fit in.”. It was some crazy times. But it’s not over yet. Until there’s a cure, stay safe my loves. And keep up your health and your medications. I want all of you to be here when mankind conquers this bug.

    Posted on Saturday, December 1, 2012 at 2:28pm