Shawn's POZ Blog

Yesterday in DC, opponents of health care reform gathered to wave signs and chant their claims that they are more patriotic than those who want to provide decent, affordable and ethical health care to their countrymen.

As Tool Academy standout and Matthew Shepard denier Virginia Foxx looked on, House Minority Leader, John Boehner, got a semi as he blustered about his founding fathers.  He then proudly recited a passage from his traveler's edition of the Constitution, which he must have dug out of the bottom of a box of cereal... patriotism is fine, but Boehner was quoting the Declaration of Independence, not the Constitution.



Instead of correcting him, Representative Michele Bachmann just read along with him beside Foxx, as other more-patriotic-than-thou Republican representatives stood behind him.

Would I have known the difference had I not been alerted to the blunder?  No, because when I was learning those things in public school I'd just been diagnosed with HIV and given less than two years to live.  (That timeline may not hold up under serious scrutiny: editor's note, editor being Shawn Decker.) 

In this month's Poz magazine, I wrote a column on why I support this measure and that something tangible needs to be done on this issue.  You can read more personal stories here.  I don't think you have to have been born with a medical condition or know the difference between the Constitution and the Declaration of Independence to understand that this is the issue of the day, and today is the day to act.  Tomorrow the House votes on health care reform. 

Call your representative's office and tell them- if it's the case- that you support health care reform.  

Positively Yours,
Shawn 
 

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When I was a kid, I loved the sci-fi series, V.  So I was optimistically excited about the premiere of the new take on the story of aliens who descend on Earth and gain our trust before revealing... a darker agenda.

Remember this?




V was awesome.  It was like the original Lost, only cool stuff actually happened.  Right now, that precious new episode is sitting on my TiVo, because I am too bummed about tonight's election results to deal with a potential blow to my childhood nostalgia if they blow it.  Why so blue?  Because here in real life, Democrat Creigh Deeds allowed Republican Bob McDonnell to trounce him for Governor of Virginia. 

Some say Deeds lost it in the debate, when he turned to his opponent and screamed, "Reptile!  You are a reptile!", over and over again as McDonnell unflinchingly stared out into the crowd until his democratic rival was wrestled away from the stage.

Actually, what hurt Creigh was the campaign strategy to distance himself from Obama, who has an over 50% approval rating in Virginia, particularly among the demos who stayed home on voting day, specifically, the under 30 crowd and black voters.  Well, now Creigh sure has a lot of distance from Obama.  It's a smaller version of Al Gore distancing himself from Bill Clinton back in 2000, and we all saw how that one turned out for the human race.

What bothers me most about the blowout election result is that I know that Glenn Beck is going to wake up with a wet spot in his tighty whities this morning because of what went down in my beloved Commonwealth of Virginia.  And there's probably going to be a stain right beside it with Maine's name on it, too.  But at least Maine mobilized, even though it wasn't enough to uphold the right for same sex couples to get married. I wonder what's worse: fighting your ass off for what's right and losing or just sleeping through it all?

We have wrapped marriage up in so many laws and privileges that it shouldn't even be up for a vote- this is a moral issue.  Do we live in a country that believes all men and women are equal?  Or are we a giant PR machine with... a dark agenda?

Any way you cut it, I don't have to turn on my TiVo to get a viewing of the Reptilian takeover of the human race. Which, the more I think about it, is why now might be a good time for an escape into the world of V and science fiction.  Only this time, unlike when I was child, I may be pulling for the aliens to finish us off.  

Positively Yours,
Shawn

If you agree with me on the issue of same sex marriage and Glenn Beck being a moron, than this is a real bummer of a blog entry.  And I've been too inconsistent with updates to leave it at that.  So check out this video I found on YouTube of Glenn Beck called The Weepening.


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In the last several days, President Obama has signed anti-hate crimes in law, the Ryan White CARE Act Reauthorization Bill and also lifted the travel ban on people with HIV.  Here's video of him explaining who Ryan White was, and why lifting the ban is important.

The travel ban was a knee-jerk response by our government in 1987- and lifting it is a great achievement.  Back when it was put in place, there were a lot of irrational fears about transmission, and perhaps the still-lingering stereotype that all people with AIDS want nothing more than to pass their virus onto others.  But really, a travel ban is discrimination based on a medical condition that isn't easily transmitted, unlike the flu.

Still, I feel like it's important to post a few comments by cowards who voice their ignorance under the veil of internet anonymity on YouTube.

Here are my favorites, and my respectful rebuttals:

Beliserius1 (20 yr-old) so... Instead of quarantine the Pandemic, we embrace it. At the cost of those who, in majority, actually contribute to the taxes, Unlike immigrants who arrive to get treated.

Shawn:  Beliserius1, you are an idiot.  Just stay quarantined behind your computer in your parents' basement, whom I suspect are the ones paying all of the taxes in your household.  

krrrruptidsoless (age 49) ... This is great. As if our water isn't bad enough. Are there other diseases that we have prejudiced against. I feel horrible that we have tried to keep disease out of this country. Doesn't the constitution give disease rights. Or am I jumping the border.  Ebola should be next on the list to invite.

Shawn:  You're worried about how lifting the travel ban on people with HIV will affect your water?  You can't throw that out there and not elaborate.  My hunch is that you've confused your sink with your toilet.  Also, are you the father of Beliserius?

friteND14u  (age 33) This is just... awesome!! :D

-------

The last comment got the most positive response of the ones posted.  The hate-filled, ignorance spewers got negative votes.  So, overall, the vast majority of people who see this and learn that there was a ban in the first place, seem to support what the President is doing.  And what the president is doing is moving forward from the mentality of 1987.

Obama also debunked my Tool Academy nominee, Rep. Virginia Foxx.  She's the gem who, months ago, suggested in the House of Representatives that Matthew Sheppard wasn't killed because he was gay and that hate crime legislation was a hoax.  For the first time, sexual orientation was included in anti-hate crimes law.    

 

 

So big thanks to the president for making the world a lot less scary this Halloween for the gay community, and for people with HIV in this country and abroad.

Positively Yours,

Shawn 

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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


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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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