October 2009 Archives

On Monday, October 26, 2009, Geocities, one of the first internet communities, closed it's cyberdoors. I didn't even know it was happening until word started to spread around Facebook today. You could call Geocities the original Facebook. If there was something before Geocities, I didn't know about it.

While my first web site wasn't hosted on Geocities, one of the first HIV blogs was- Steve Schalchlin (my Hemo2Homo Connection movie partner) and his Living in the Bonus Round.  He started blogging in 1996, mainly to keep family and friends up on his failing health.  As he started on HIV medications that began to turn things around, he found himself in the unlikely role of both being alive and becoming an internet star.  Strangers were fascinated with his writing and sense of humor and he appeared in The New York Times, People and Poz magazine alike.

Steve gives Geocities a good send-off here on his blog.

For me, Geocities was a place to chat with new net friends, who became real-life friends. In 1996, the world outside of my bedroom and small hometown of Waynesboro opened up: Geocities played a huge role in that being possible.  It's where I met my first post-positoid girlfriend.  Meaning, the first person I dated after going public with my HIV status at age 20.  She lived in Brazil, and were together for just over a year.  I learned how to disclose my status online...

In the safe confines of Geocities. In the Broadway chat room on the site, Steve encouraged me to start a blog the same year he did, when he still thought he might die and probably thought I would carry the smartass-with-AIDS torch well.  We met lots of other net friends from Geocities in person as well, when people traveled from around the world to see Steve and his partner, Jim, go off-Broadway with their hilarious musical, The Last Session.

Yes, there were internet arguments- me and my girlfriend broke up, in Geocities where we met.  There was a weird thing where someone was pretending to be teenage movie stars.  But it was cool, we were freakin' communicating with like-minded people from around the world.  And Geocities was the first to fulfill something that slipped the minds of the Founding Fathers: the Right to Have Thine Own Webpage.

I'll always have a place in my heart for Geocities, because it is indelibly connected to the biggest decision I made in my life: open up about HIV.  It was life-changing, and the internet played and still plays, a huge role in how I educate about my pet virus.  When I think back to those early days, and the sound of the dial-up modem loudly ringing out through the house, probably waking my parents up as I was logging on to find out what my West Coast friends were up to before they went to bed, I smile. 

And, now that Geocities is going to bed, I can only tuck it in, kiss it on the forehead, and say... *RRRRHhhhhhh, ARRRRRHHHHHH, IIIIRRRRRRR....... ZZZZZZHHHHHHHHHHH!* (dial-up modem sound.)  Wait for it... wait for it... still connected?  Okay, the kiss on the forehead, and a comforting, "Goodnight, old friend."

Sleep well.

Positively Yours,
Shawn

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Apparently I missed Oprah's recent show on HIV/AIDS; sounds like I saved myself a bunch of grief.  Instead of having positive examples on prevention and awareness, it sounded like yet another "positoid-as-monster" story.

Jack Mackenroth is a proud positoid, Poz coverboy and Project Runway runaway star.  He saw the show, and here's a portion of his open letter to Oprah:

"My first issue with the show was that several of the women on the panel chose to wear disguises. I understand that there is a huge stigma about being HIV positive but if they wanted to remain anonymous then they should not have gone on national television! By appearing in disguise they only reaffirmed the idea that being honest and open about having HIV is NOT OK.  That was a huge disservice to the HIV community.  By not being open and honest they sent the message that people with HIV should hide and keep it a secret, which only adds to the stigma of living with the disease. Would someone with cancer wear a disguise?  If we are taught that HIV is shameful then how can we expect people to willingly go get tested?"
 
To read the rest of Jack's open letter, visit his blog.

I know that getting a fair shake might not make for good TV, but positoids need to stand up whenever we are defaced or are presented as one-dimensional, sex-obsessed monsters, and I applaud Jack for doing so.  Fear-mongering is not good HIV prevention, and because of this episode alone I will probably have to answer questions about the lowest of low risk (nearly zilch) of the possibility of transmitting HIV domestically with Gwenn, because some doctor on the show didn't explain that the daughters of the infected mothers- despite their concerns- aren't at risk of contracting the virus from common household items.

This takes away from my ability to educate about real risk- the risks involved in assuming someones' HIV status by looking at them.  The risk involved in thinking that every person living with HIV even knows their own status.

Thanks, Oprah.

Positively Yours,
Shawn

Listen to me and Gwenn discussing HIV/AIDS issues with Jack and Robert Breining last August.





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With all the concerns over health insurance reform and how that would help out people living with HIV, positoids managed to score a major victory on the Hill this week when the Ryan White CARE Act was extended for four more years.

Check out the Poz.com article here.

The Ryan White bill received bi-partisan support, getting 408 votes in the House, with only 9 nays.  One of which was Ron Paul.  He's not against people with AIDS specifically, he just votes no on everything.  I say RuPaul run against him for that seat in Texas. 

Naysayers to harm reduction aside, the Ryan White CARE Act will provide federal money to assist low-income or uninsured positoids.  It's a good system, AIDS Service Organizations really rely on this, and there was a fair amount of concern over the last several months that the Act might not get renewed, given the state of the economy and the fact that domestic HIV/AIDS issues have been off the map for quite some time.

Like Michael Jackson's career boon after his death, the passing of the CARE Act's original co-sponsor, Ted Kennedy, in recent months may have helped move people to move this thing along.  Morbid, but in my opinion, true... I'm glad his colleagues and the AIDS community rallied to make this happen.

If you're looking to rally and make things happen, check out the latest issue of Poz magazine, which has an article on advocacy in the internet age.  Also, I have an article in it called, "Healthy Debate", about my life as a WPE (Walking Pre-Existing Condition) and attending town hall meetings this summer on health insurance reform.

Check it out.  Get inspired.  And let's carry the torch for folks like Ryan White and Ted Kennedy, who are no longer here to fight our battles for us.

Positively Yours,

Shawn

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One of the biggest thrills I've had lately was being invited as a "hemophilia humorist" to the 20th anniversary of the Committee of Ten Thousand (COTT) on October 2nd in Washington, DC. 

COTT was formed by people with hemophilia who were infected with HIV to address the blood crisis in the community as it pertained to the tainted blood supply.  Over the years, COTT has expanded it's mission to not only advocate for those infected with HIV, but also Hepatitis C infection as well.  They also keep an eye on things to maintain a safe supply for everyone- thickbloods included.  The name, COTT, is a reference to the thousands of people the hemophilia community has lost to AIDS over the last thirty years.

COTT, like the gay community,  rallied around the issue of AIDS in America, because watching all your friends die is a terribly effective motivating force.  Even though I was exposed to HIV under the same conditions as those who formed COTT, I was too young at the time of my HIV diagnosis to understand the full implications surrounding the negligence involved. 

One of the things that helped open my eyes after high school was And The Band Played On- the book by Randy Shilts (which I haven't read) in 1987 which was turned into an HBO movie (which I saw) in 1993.  The title is a reference to the band on the Titanic, playing music as first class citizens continued to dance as the ship went down. Now, I'm fully aware of the terrible way the blood industry handled what was happening to the hemophilia community.  It was awful.  But I didn't learn the facts until about ten years after I was diagnosed, and by that time I'd committed to taking my life one day at a time and not letting things get me down. 

When I started educating about HIV, and found my sense of humor to be an invaluable tool, that self-preservation system enabled me to be a better conduit for others to "get to know" someone- me- who was living with HIV.  In effect, making it more real.

A few days before COTT's 20th, I was combing through My Pet Virus, searching for some good stories to read that pertained to the hemophilia community.  Nothing offensive, because, as the ancient Chinese proverb says, you don't want to piss off a roomful of activists. I made a primer joke about what sort of humor was to come, joking that at the very least, I could outrun a roomful of people with bad joints.

That one kind of bombed.

If you are wise and enjoy intelligent literature with layers upon layers of nuance, then you already know that the first chapter in my book gave birth to the term "thinblood".  I decided to read that just as I wrote it- with great trepidation.  In the book, I wrote about the risks of naming the hemophilia community; "you should see what (the hemophilia community) did to the guy who started calling us "bleeders"- not a pretty sight."  

My word took. Corey Dubin of COTT leaned behind me, giving a fellow thinblood a high-five, saying, "Hey, thinblood!"  Then later, the word was used by Fran Fahey, wife of beloved community member and COTT co-founder, Tom Fahey, who passed in 2002 while awaiting a liver transplant.  It was an honor to hear others say it. And get it. 




The immense depth of history and knowledge in the room was humbling.  Dr. Don Francis (Matthew Modine in HBO's vision) of And the Band Played On fame was the keynote speaker.  It was a joy to meet someone who tried to sound the early warnings of what was happening with HIV and earn some chuckles from him as well.  When I read about blood companies and the class action settlement that bought the townhome I currently live in, I was reading to the people who fought to make that- and the subsequent Ricky Ray Relief Fund Act- happen. 

I have been fortunate to survive all of the medical hurdles I've encountered thus far. And I was extremely happy that those who have experienced the loss of loved ones- children, partners, friends- found some humor in what I read and said at the 20-year celebration of survival.  My book isn't historically significant like And the Band, but providing some levity and inspiring a dark-humor-tinged smile from a community that has been through so much pain is truly an honor.  I love being a thinblood, a blood brother to COTT and I'm glad that I lived to be their humorist. 

It's a job and a responsibility that, ironically, I take very seriously!

Positively Yours,
Shawn


Shawn on:  
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Check out this page on Poz.com, which has video of last weekend's HIV/AIDS rally.  You can see a clip of me and Marshall kicking things off with a Synthetic Division jam.  Sean Strub introduced us in his "Tainted Bloods" jacket with the big red skull; he informed the audience that I was the leader of this gang and the jacket signified his membership, as well as his tainted blood.

I promise to post the full video of his speech about "The Tainted Bloods", as well as the two songs I sang at the rally. 

One of the big thrills for me was seeing my cousin, Holly, mid-song from stage.  "Cousin Holly from Kentucky!"  I shouted excitedly, noticing her rainbow-colored mohawk- far cooler than any hair stylings I have ever attempted.  I just love this picture of us with our friends, supporting Equality and HIV/AIDS awareness.

Hard to believe those three weekends in DC came and went so fast!  All the travel as of late has made me a lazy blogger, which is why I'm posting... another link.  In DC I spoke with Todd Heywood about the HIV prevention work that Gwenn and I do.

Read it here!

Now I am off to the National Association for Campus Activities (NACA) Mid-Atlantic Conference to speak to college students with Gwenn about sexual health.  It's a huge deal- we get a 15 minute showcase in front of students from tons of schools.  They'll be seeing musicians, entertainers and educators over the course of a long weekend, and we can only hope that sexual health and the way we present it is something that they will feel is needed on their campus.

Wish me luck!

Positively Yours,
Shawn
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Went for a third consecutive weekend in DC, this time playing some music with my bandmate, Marshall Camden.  Here's a picture of us looking all rockstar-like on the Ellipse in front of the White House, where the rally took place.

The Ellipse itself is a huge, round patch of grass.  It looks like a UFO landing spot.  The reason for being there was for the Equality March weekend, a little AIDS rally to inspire interest in the cause for the next generation of the LGBT community. 

I'll be posting video of me and Marshall rocking out soon, and some other asides.  For now, I just want to say that Equality- full-equality, not half-assed bullshit- for the LGBT community should be a no brainer whether you are gay or straight.  Anyone who has had a hint of discrimination in their own lives gets this, or at least I hope they would.

In remembrance of Matthew Shepard on the 11th year since his passing, we should all do our parts to continue the fight for equality- as members of the community, allies and- most importantly, human beings.

Positively Yours,
Shawn

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This Saturday my band, Synthetic Division, will be kicking off the Equality to End AIDS Rally/Vigil in Washington DC.  All the pertinent information is below- but basically this is a call to action that is coordinated with the Equality March on Sunday.  The hope is to inspire the next generation of HIV/AIDS activists and educators.

I'll let Cleve Jones, the founder of the NAMES Project AIDS Memorial Quilt, explain it:
  "The weekend is about achieving full equality for LGBT Americans. We need to use that political power to remind the country that the AIDS epidemic continues. A great many young people will attend the march; we need them to continue the fight against HIV/AIDS."  

We're playing two songs, so if you arrive late you will miss the Division as the kids call us, but don't sweat it- there will be many positoid and positoid-friendly performers and speakers all evening.  For a great cause.  One I can't wait to be a part of.

Hope to see you there!

Positively Yours,
Shawn

PS... the event needs volunteers, so if you're in the DC area and can help out, they'd love to hear from you.  Contact Christine at the email below.

PSS... info overload, but today is the last day to vote for Ethan Zohn.  Voting ends at 5 pm, and he is 1% point behind... let's show what the HIV/AIDS community can do- if he wins, he's donating the winnings (once again!) to HIV/AIDS prevention and cancer research.

--------------------------------

THE EQUALITY TO END AIDS

Media Contact: Diana Scholl; 917-402-2576/D.Scholl@housingworks.org

Organizer Contact: Christine Campbell; 202-409-9786/Campbell@housingworks.org

What: Equality To End AIDS HIV/AIDS Rally and Vigil at National Equality March

Where: The Ellipse (by the White House)

17th Street NW & Constitution Avenue NW

Washington, DC

When: October 10, 5:30 to 8:30pm

Equality To End AIDS HIV/AIDS Rally and Vigil at National Equality March

As tens of thousands of LGBT Americans and their allies converge on Washington next month to march for equal rights, they also will remind the nation and the LGBT community that the AIDS epidemic is not over as well as remember the more than half a million Americans who have died from the disease.

The Equality To End AIDS rally and vigil will take place Saturday, October 10, the day before the massive Equality March. Equality To End AIDS will be held from 5:30 to 8:30 pm on the Ellipse, in front of the White House, and feature an inspiring roster of speakers and performers (mostly HIV+), culminating in a candlelight vigil.

Organizer Contact: Christine Campbell; 202-409-9786/Campbell@housingworks.org

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I was somewhat concerned going into the district with the highest infection rate in the United States dressed as a lemon.  But when I took the stage after Don from Whitman-Walker introduced me as someone living with AIDS, I posed for a moment to give everyone a chance to read my chest, "Life Gave Me AIDS" and then my back "I MADE LEMONAIDS!"... and about 1,000 or so people laughed and clapped.

Then Don read what amounts to my life story- by the time I took the podium people were on my side.  Even though I looked like a doofus.  Either way, I thanked God for having the DC Cowboys as an opening act to loosen people up.  So here's as serious of a speech as you'll ever hear from someone dressed as a giant lemon. 




Thanks to Aram from BladeTV for the video! You can see a highlight reel of all the morning's speakers and entertainment on YouTube.

In case you're too lazy to watch my speech or are at work and don't want to get fired, basically I thanked the Whitman-Walker Clinic for helping positoids turn AIDS into lemonAIDS, using more tactful language since I'd already nailed that sentiment visually.  I also thanked my teammates in Team Supersnack, but- during my big moment, I totally Hillary Swanked the love of my life, Gwenn...  She didn't care and on the car ride home when I asked she said, "Yeah, you said something, I think?" 

It's all good, Gwenn isn't the type that is needy for public displays of recognition, and the award really wasn't about just me.  It was for all people living with HIV, especially those who don't yet have the courage- or lack of intelligence?- to wear a giant lemonAIDS costume onstage.  Of course, now I fear that's my image. That the rest of my educational days in sexual health will be a concerted distancing from "that lemon thing", as it will come to be known...

But really, the AIDS Walk in DC was by far my most favorite AIDS Walk ever.  Supersnack really kicked it up a notch, and walking around DC with a teammate dressed as George Washington is an experience I'll never forget.

Though I kind of winged the speech, the one thing I knew is that I would be dedicating the Courage Award to Ethan Zohn, who is trying his damnedest to kick cancer in the balls this year after being diagnosed earlier this year.  Ethan stood up for people with HIV in 2002 when he took his Survivor Africa winnings and used the money to start an HIV prevention/awareness organization in Grassroot Soccer.  Aside from the obvious evidence, he's a great guy who is currently obsessed with two things: beating cancer and winning the GQ's Better Man contest! 

Also, the infamous BlameDrewsCancer campaign, which encouraged people to blame cancer for the most mundane things- like losing your keys or forgetting to pick up the dry cleaning, has lended their support to Ethan.  So look for lots of BlameEthansCancer updates on Twitter and Facebook, and join in. 

What do I blame Ethan's cancer for?  For wearing that LemonAIDS outfit!

Positively Yours,
                                   
                     

This past weekend in DC was incredible. I had the privilege to do a My Pet Virus reading at the Committee of Ten Thousand's 20 Year Survivors on Friday evening, then got to walk with Team Supersnack in the AIDS Walk in DC, raising over $34,000 with our group.

And I got to do the latter looking like this!

                                   
                     

Gwenn and I ended September with a long overdue trip to Berry College last Wednesday. It all started a couple of years ago, when a peer educator named Michelle saw us speak at a conference.  Since then, she has been working to have us at her campus.

It's always an honor to have someone remember your message.  And want to help share it with more people.  So, on Wednesday morning at 7 am, Gwenn and I got in the car, drove to the airport and hopped a plane from Richmond to Atlanta.  No delays, nice weather and a good chunk of time to sleep in the hotel before driving to Rome, GA, where two frolicking teenaged deer greeted us as we drove into the very scenic campus.

When I was told by the educators that the campus was 70% female and that there was a newspaper article on campus that suggested that the males should change their behavior of staying in their rooms all evening, I went all Stephen King on them.  I posed the thought that the "dark secret" of Berry might be that male students transform into deer at night.

Raised some eyebrows!

Besides my imagination running as wild as those deer, what's funny about this particular talk was that I'd posted on Twitter about speaking that evening at Berry, and got a response on Facebook from a Bella Morte fan/Berry College alum, Raven, who was at Dragon*Con... she made the 2-hour drive all the way from Atlanta to hear us speak.  Too cool!

Gwenn and I spoke in a church on campus, and a few times either I said something, or a student said something that had surely never been uttered in that building before.  Also, it was the first time that we'd spoken together since an HIV/AIDS retreat in June, and I can't get across how much I love educating with Gwenn.  And also speaking to peer educators who will be spreading the message of sexual health on campus long after we are gone.

Here's Gwenn with the crew from Berry, who were so kind as to take us out to the Olive Garden after the talk.  We had a great time there; lots of love to the peer educators, students and Bella Morte fans who turned out to hear us speak.  If any of you are reading this, please, if you remember one thing that I said, it is this:

The deer are watching.







                                   
                     

I've been a little political as of late; if you call thinking that health care reform and health care in general shouldn't be motivated solely by profit margins.  So it was quite refreshing when I was invited to last Friday's "An Evening Without Politics", which was hosted by the National Minority AIDS Council.

Now, I wasn't quite sure how I got invited.  But I took my responsibilities as a roving reporter and member of the media very seriously.

So what did this ace reporter find?  And what was the point of the event?  Well, I found a roomful of about 800-1000 who cared about the issue of HIV, who were there to raise money and awareness about how it is disproportionately affecting African Americans in the United States.  There was also a call to create initiates at HBCUs (Historically Black Colleges & Universities) to encourage peer-to-peer HIV education.

Because not just HIV spreads- but HIV prevention spreads too.  The word just has to get out there.

Roving about as I were, I spoke with a member of Congress from CT,  Jim Himes, who said that federal money is much better spent on prevention then dealing with the consequences of what happens when someone tests positive.  Here here.  I tweeted the words of Rep. Maxine Waters, who implored the audience that "we can conquer HIV/AIDS- it can be done!"

I love Maxine, and wanted to rush the stage to give her a big hug.  But, at this point, I didn't want to test the elasticity of that Media badge, fearing it didn't allow for as much give as my friend the condom. (YouTube link from another roving reporter type guy.)

 
At the event I was reminded that Sunday, September 27, was to be the second ever National Gay Men's HIV/AIDS Awareness Day, and I thought about how HIV is once again spreading rampantly in the gay community... should there be a separate day?  I think so.  Hell, there can never be too many AIDS Days in my opinion!  But in regard to AIDS and the gay community, who were hit hard and led the way for safe sex education, today a renewed focus on awareness is especially important.  A new generation of gay men are coming of age in a world where 1) HIV is treatable and 2) they haven't seen a good portion of their friends die from it.

For many people its not until they are infected that the realities of life with HIV- medically and socially- set in. 

Newly published positoid author and Poz-itoid Regan Hofmann was in DC at the Evening Without Politics, too.  She blogged about the Gay Men's AIDS Day on Sunday (more timely than I!), and also introduced me to the AIDS Czar, Jeff Crowley.  Now, czars in general have getting a bad rep lately, but my only previous exposure to a czar was in 1997- the last time I was invited to a political function by then-AIDS Czar Sandra Thurman.  Funny, Bush's abstinence-only AIDS Czar never called on me to serve the country... though he did end up in the DC Madam's black book of clients.

But this is a blog entry without politics.  And it looks like there is hope that the Ryan White Care Act will be renewed, with bi-partisan support.  Times are changing, and I feel they are changing for the better.   And after an Evening Without Politics, I am inspired to do what I can to be a part of the process.

Will be blogging more about DC, where I am headed once again tomorrow.  I am honored to be on hand to help celebrate the 20th year anniversary of the formation of the Committee of Ten Thousand, the hemophilia activist group formed to deal with the HIV crisis that affected the community.  And then on Saturday, Team Supersnack kicks AIDS in the balls at the AIDS Walk DC!

Now, it's off to make sure my lemon-AIDS outfit fits right.

Positively Yours,
Shawn

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