October 2010 Archives

Camp Heartland (now One Heartland) founder Neil Willenson is a hero in the HIV/AIDS community because has helped thousands of children with HIV both forget about their status and learn how to accept it.

By starting a summer for HIV positive children back in 1993, Neil has helped create a safe haven that has undoubtedly changed so many young lives for the better.  A few years ago, I had a teenage friend who went to Camp Heartland, and he came back with lots of new friends and the feeling that he wasn't the only teenager dealing with HIV.  Now, he's in a loving relationship and is forging his life as an adult with HIV; I'm certain his visit to camp played a hand in guiding this journey to acceptance.

After 17 years with the camp, and one year shy of his 40th birthday, Neil is taking on new professional challenges as Vice President of Community Relations for Kapco, Inc., where his years of expertise with One Heartland will undoubtedly be put to good use.  He's keeping his beloved Heartland well within reach as well, continuing to fund raise and stay involved with One Heartland in his new role as Founder Ambassador.  There's a great article about Neil's work in founding One Heartland, which you can read here.  (Thanks to Bob Bowers for bringing this to my attention on twitter.) I just wanted to give a shout out to someone who saw how hard it was for kids with HIV to deal with discrimination, and changed his own life's course to make a better pathway for those who needed the helping hand.

Thanks so much, Neil, and the best of luck in all of your future endeavors!

Positively Yours,
Shawn
 

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On Tuesday, vote for the candidate most likely to give a shit about you.

Positively Yours,
Shawn


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This Halloween, a kid named Aidan is busy drawing up some scary monsters.  Which makes him just like a lot of other kids around this time of year.  But something that sets this 5-year old apart is that he is going through chemotherapy treatment for cancer... The good news?  The treatment is working.  The bad news is that he's got a couple more years of tests, treatments, hospitals...
You know, the real-life scary stuff.

To help cover his medical bills, Aidan is selling his macabre drawings.  I wanted to buythis killer clown, but someone beat me to the punch because I didn't know out Etsy password and username... damn it. Sucks, because the clown matches our red bathroom perfectly, which already has a piece by positoid artiste extraordinaire, Barton Benes.  That clown would have gone right beside a red squirt gun blasting out a little strip of Barton's blood... Aidan, a lover of all things morbid, would probably think that was pretty damn cool.  Which is nice, because I think what he and his family are doing is pretty damn cool, too. 

Right now, his art store is constantly being updated do to the show of support for this family's fun way of dealing with a serious problem. So, this Halloween, I'll be thinking of him and all the other kids out there who are dealing with scary life issues at far too young of an age.

Positively Yours,
Shawn
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I referenced a speaking pal, Erin Weed, in my last post about the It Gets Better campaign.  Well, this week on Wear Purple Wednesday, my good speaking buddies, Kelly and Becca, launched an ambitious campaign to provide resources for those affected by sexual assault.

When Kelly was sexually assaulted in college, she turned to her best friend, Becca.  She didn't have any idea where else to go at the time...  I find it extremely admirable that the friends have educated so many students over the last several years, and have now created a one-stop resource for anyone who may find themselves in need of more information.  It's called One Student... but you don't have to be a student to sign the pledge (Gwenn and I have) and get informed about sexual assault. 

So cheers to my buddies for caring and being pro-active about an issue that affects way too many people. 

 

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So this purple thing has caught fire- big time endorsements to wear purple have been coming in all day from notables such as Barney and the Incredible Hulk, who says, "I wear short purple pants every day in order to fight homophobia". (Thanks to @BuddhistHulk on Twitter for that funny post.)

Click on my purple likeness to read USA Today's article on why many are joining the Hulk today and standing up to homophobia.

Positively Yours,
Shawn



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I blogged about the It Gets Better campaign last week in regard to the bullying of the teenage LGBT community and the recent, tragic suicides linked to institutionalized bullying.  My friend, Erin Weed*, posted a great blog entry on how we all can do better than telling teenagers to "wait it out" and suffer.

You can read her thoughts on It Gets Better below:

"Telling kids "it gets better" is a kind and soothing thing to say. But it isn't addressing the depth of despair these young people are faced with. From what I've seen in the schools, it's almost insulting. Bullying, regardless of why the individual is being targeted, is a form of violence. Would we tell a person in a violent relationship that it gets better? Then send her home to her abuser with no intervention, education or proactive strategy to help her survive? Probably not." -
 Read the entire blog entry HERE
*Erin Weed is a women's self defense instructor who could beat the shit out of any high school bully if she wanted to. (she probably wants to.)

I agree with Erin that the time for turning a blind eye on bullying simply based on someone's sexual (or perceived, in many cases) orientation has passed.  It's that mentality that allows legislators to pass discriminatory laws in adulthood.  If we allow these bigots free passage in their youth, then what's to stop them from continuing their hateful actions beyond junior high and high school?

I thought of a funny idea to post an "It Gets Worse" message to the youth who are bullying, but the guy below beat me to the punch.  Sadly, his hilarious video was pulled from YouTube, as it was wrongly considered "hate speech" when it is obviously satire with a message that falls right in line with the It Gets Better campaign... So, this one goes out to all you bullies.  This is a glimpse into your future.  Either cut out the mean-spirited bullshit, or come to terms with the fact that your pitiful lives of entitlement and the mirage of moral high ground is going to catch up to you someday.

IT GETS WORSE


Positively Yours,
Shawn

PS... on Wednesday- tomorrow -, people are encouraged to wear purple in remembrance of those lost to suicide as a result of being bullied.

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I'm not sure how I found out about this, but somehow the internet and it's vast tentacles led me to Blog Action Day, an initiative that brings together bloggers and raises awareness about various topics.  When I saw that today's Blog Action Day is about the need for clean drinking water, I immediately signed up.



Not having access to clean drinking water makes it so much more difficult for people who are living with HIV to combat the effects of the virus. It also makes adherence to medication more difficult, due to the increased risk of diarrhea. So if you could join me in signing this petition- a small act- I'm sure my positoid brothers and sisters who don't have it as good as I do would be very thankful.

Positively Yours,
Shawn

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When I turned 35 this summer, I posted a blog stating that I am officially middle-aged.  I got quite a few messages about how extended life expectancies have shifted that number, and how I'm not "officially" middle-aged yet.

I do believe that measuring age in numbers really doesn't have anything to do with the youth of one's spirit.  The real challenge in life is to hold onto that youthful spirit while allowing the wisdom of each year tucked under your belt to inform your decisions and make it less likely to repeat the same mistakes twice... like posting that 35 is middle-aged when you live in Virginia.

It's cool to think that, even for a viral pinata such as myself, that 25 is not middle-aged. I can see an Old Man Decker roaming the earth in four decades and, even though my body may be rejecting the thought of once a day iced mochas by then, I'm sure the world will have plenty of delightful things to fill that void.  Either way, over the weekend, I got a glimpse into that future in the form of a bronze statue.




These old folks welcome visitors at the foot of Waynesboro's Serenity Garden, which is located right behind my old stomping grounds, Westwood Elementary School.  The Serenity Garden is a place where survivors of cancer, as well as the families who those who have been lost to cancer, can go to reflect on the medical struggles and fond memories of fallen friends.  I received an email a month ago informing me that an anonymous donor dedicated a stone in my honor, and I was asked if I'd say a few words a the dedication ceremony.

So, of course, I was surprised to see the enormity of the statue!

I spoke very briefly about the commonality of facing medical adversity, whether it's hemophilia, HIV, cancer- anything that disrupts one's life and forces someone to either draw on the reserves of the human spirit or attempt to run like hell in the other direction.  None of it is easy, but I did speak to the fact that those of us who are misfortunate enough to find ourselves in that spot, while also having the incredible luck to have a support system of people who give a damn... well, it is incredibly special to see that side of humanity.

It's why I'm opposed to the phrase "lost their battle with cancer", "lost their battle with AIDS".  These things can kill us, sure, but anytime someone holds their head high with dignity and stares down the challenges, I don't think that is cause to raise the hand of the illness and declare them the winner.

On a personal note, it was kind of cool to be so close to Westwood Elementary School, a place where I literally grew up.  It was the school where I showed up, excited to find out that my classmates lived on the same street of the house I'd just moved into a few short blocks away from the school.  It was where I pelted the principal's car with snowballs during a winter storm... it was also that I got kicked out of after testing positive for HIV.

What made it all hit the spot was realizing that, when I tested positive, no one's crystal ball could have imagined that I'd be back there, halfway between the boy who ran and played on the jungle gym sets and the wise, bronzed man sitting on the bench.  I may not be officially middle-aged, but I'm sure damn close to it.

And I couldn't be any more grateful for that.

Positively Yours,
Shawn

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I'm not a religious guy, but I do believe in something bigger than our physical bodies- I just don't know what exactly "it" is. Do I believe that humans are more important than toads? Yes. But that's because I am human and I am blessed/cursed with self-awareness and ego. That said, I do love me some toads.

As long as they don't startle me.

What does startle me is the lack of an HIV prevention message in churches.

Often times I wonder: if I weren't HIV positive would I be more religious? Officially, my status doesn't exclude me from any particular religion, but when I tested positive in 1987 at age 11 my parents did encounter a few roadblocks when they tried to join a couple of churches in our small hometown. That was fine by me; I loved sleeping in on Sundays. As I came to terms with my status, I was welcomed into the AIDS community by a very friendly, outstretched arm of support from the gay community. After that, I took it personally whenever I'd see homophobic speech from fellow Virginia boys such as Jerry Falwell and Pat Robertson.

There are lots of churches that help people with AIDS and welcome them into their flock. The problem I have is the lack of HIV prevention, particularly in the African American community, where AIDS is the leading cause of death among African American women in their early 40's. One would think that HIV prevention for teens would kick off Sunday school every weekend, but I think one of the problems with churches in general is a focus on things that people wrote one hundred years, when the focus should be on today's issues and what we can do as people to help one another through the challenges of modern day living.

Perhaps I'm viewing the whole issues from the AIDS-colored lenses? As someone who has lived with this energy-sapping, socially stigmatized medical condition, I do what I can to prevent the spread of HIV by educating about how the virus is transmitted. At the same time, I'm sensitive to those who, like myself, are already infected.

For Catholics, the big hang up is condom use. I've spoken at a few catholic universities with my wife partner, Gwenn, and we shared how we used condoms to keep her HIV negative. Among the younger generation, there is an openness about this topic that is coming to light, and it's a wonderful thing to see.

My frustration with the lack of religious backing in HIV prevention is that they have the one thing that HIV educators seek out more than anything: a captive audience. If you have someone's ear, then you have their heart; you have their trust. And if you are providing life-saving information, then what better example can you give of truly valuing human life? Valuing human life after it's been conceived, when we all start to get a little more complicated than our humble, sperm and egg beginnings. I wish the churches would do more, and then I think about the judgmental tone that it is often used in religion... in HIV prevention work, taking that tact could actually do more harm than good in terms of risk reduction.

Sadly, until religions can adequately confront their homophobia, they will remain of no use in the battle against HIV. In that regard, I sometimes wonder if toads would have a better chance of licking this problem than us humans.

Positively Yours,

Shawn

PS... be sure to read the September 2010 Poz cover story by Trenton Straube, on why the ex-gay movement is a danger to gay and questioning youth and how homophobia increases the risk of HIV transmission. Hope everyone had a great National Coming Out day yesterday!

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Thirty years ago at age 40 the world's most celebrated musician, John Lennon, was murdered.  A social activist with a healthy sense of right and wrong was lost just before the AIDS crisis hit.  It's safe to assume that, had fate allowed him at least one more decade, he would have been a major ally in this fight.

Imagine... songs about AIDS that don't suck.  John calling out President Reagan for his silence on the topic.  Advocating for clean needle exchange programs and safe sex.  I think, or I hope, that he would have been at the forefront of every struggle we as people with HIV have faced along the way... because I seriously doubt that- with how hard HIV hit the art community- he wouldn't have seen the effects of this in his social circle.

So, in thinking about this today, I want to wish you a Happy Birthday, John, wherever you are, just in case you are on your laptop poking around the Poz Blogs. And, if you are in Heaven and there is a God, I'm confidant that he knew full well what you meant when you wrote that line in "Imagine".

Positively Yours,
Shawn

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While the recent rash of suicides among GLBT youth has been devastating, it's heartening that it's being discussed openly that gay youth are at a higher risk to take their own lives.  One of the reasons is that bullying for them in public places- such as school- is tolerated by fellow students and faculty.

When I first went online to dip my toes in disclosure regarding my HIV status, I met a lot of people who were using the internet as a means to help themselves as well as others.  I met Steve Schalchlin- my surrogate Godparent, positoid pal and fellow movie-review cohort.  Steve had gone online for the opposite reason I did; I was excited to start a new chapter in my own personal history with HIV, while he was sick and planned to document his decline in health for family members because emails and phone calls seemed too exhausting.  Steve introduced me to Gabi Clayton, a mother and activist on GLBT issues from Washington state.

In 1995, she lost one of her sons, Bill Clayton, to suicide.  A month prior, he had been targeted and beaten.  The event left him wondering what place he had in this world, undoubtedly.  Instead of grieving in private, his parents opted to educate the public on what their son went through, and how to prevent something like that from happening to other parents.  They became heavily involved in PFLAG and Gabi even appeared on Riki Lake to discuss the issue.  (Steve wrote a song about her, too.) As I grew closer to Steve and Gabi, I felt saddened that I didn't get a chance to meet Bill, who was pretty close to my age. He died at 17, I was 20 when I decided that living in silence with regard to my HIV status wasn't acceptable anymore. Three years isn't a big gap, but when I thought about it, at 17 I could have never imagined disclosing my HIV status online.  At 17, three years is a lifetime away...

There are a lot more resources now than there were in 1995.  Dan Savage has started a brilliant campaign that encourages supporters, as well as adults in the GLBT community, to share their insights online, hoping teens who are doubting their purpose in life might get a glimpse into a future that holds more than insults and humiliation.  The campaign is called "It Gets Better".

Here's Dan and his partner Terry's video:




There's also a documentary about a landmark case regarding bullying in public schools.  It's called Bullied, and here's the trailer...





Here's to hoping that these multiple waves of support, online resources, understanding of the impact of intolerance and the glimpse of a brighter future ahead saves some lives in the coming days, weeks and years.

Positively Yours,
Shawn

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Team Supersnack showed up in full force this year, but the belles of the ball were definitely the AIDS is a Drag crew.  It looks like I'm pageant posing here, but I'm actually holding my Wal-Mart hat between my legs, I couldn't bear to wear it alongside this impressive squad of AIDS Walkers.

Speaking of the hat... I'd foolishly stated on Facebook- which is quickly outpacing AIDS as the worst thing I have to live with- that if a joke photo of me in the douchetron hat got like 80 comments or Likes then I'd buy it and wear it through Christmas.  Some terrible, terrible people launched a campaign and now I have the hat.  Poz blogger David Copogna posted on my page, "I'm sorry, you look like a redneck with that Jesus baseball cap on. Was that the point?"

I limped my way across the finish line on Saturday, in what is now a tradition of injuring myself during AIDS Walks.  It's my bum ankle, it really starts to tweak out around the two mile point, and really craps out after we do a post-Walk team brunch.  There's talk of renting me a Segway for next year's Walk, which is the only thing more humiliating than wearing my bedazzled hat.

But hey, I'd make it work. Segways look fun, and I'd dress up as a cop and grow out the worst mustache I possibly could.  Perhaps carry a megaphone and cheer all the other Walkers on, which would get old after about 300 feet or so.  One way or another, I'll be there every year to Walk.  I love it- seeing so many people who care about the issue and want to kick AIDS in the balls is an incredible thing.

Thanks again to all my donors this year, including my mom who told Gwenn and I to "put food on the card"- which was mostly used for drinks.  Oh, and a big thanks to Kimpton Hotels for putting us and Team Supersnack, who were once again the largest non-corporate fundraiser in the AIDS Walk, up.  It's nice to have the support of a GLBT-friendly chain of hotels that gets the fact that we need to continue to fight HIV, one swift kick to the nads at a time.

For now, I put my feet up.  Where's my Cryo Cuff?

Positively Yours,
Shawn



 

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