BOOK TOUR

 

One

I've been procrastinating writing this column for days, and now I know why: I'm jealous. My friend Shawn Decker has written a memoir, which has led to a nationwide book tour. About a month ago, I went to a reading he gave in San Francisco, the first time we'd met in person after finding each other online. I'm not sure he'd identify as a crip, and he's unfortunately not gay, but I still think he and I are brothers under the skin, and not merely because we both write for the Web.

Shawn is straight, has hemophilia, and is HIV-positive. He calls himself, alternately, a thinblood and a positoid. The rest of us, who aren't lucky enough to have either hemophilia or HIV, are known as thickbloods and negatoids. Shawn's chronicle of his life is called "My Pet Virus." In its pages, he tells what it was like growing up positoid and thinblooded in a small Virginia town. As a writer, Shawn is largely self-taught. He hasn't gone beyond high school, and he still thinks of himself as unsophisticated. By his standards, and those of his town, a big-city Jewish homosexual like me is probably equivalent to some sort of exotic bird. If I started comparing him to Huck Finn, he'd probably laugh, but Huck is my closest reference point for the kind of classic Southern storytelling combined with flashes of sharp insight that infects "Virus" so entertainingly. How else can I react when Shawn says that getting HIV from contaminated blood products is like having unprotected sex with hundreds of people, but a lot less fun? Or that thinbloods with HIV are jealous of gay men with HIV, because at least the gay men presumably got infected with smiles on their faces? That's the kind of warped humor I relate to, and that BENT readers relish, but there's a deeper reason I was drawn to Shawn's story.

Two

Ever since I was little, I've been fascinated by hemophilia. Along with FDR's polio saga, the story of the blood disease took root in my consciousness as the ideal intersection of disability and history, the meeting point of my lived experience and a world I loved but could only read about. I investigated how hemophilia manifested itself in Queen Victoria's family, and saw programs about many of the royals on PBS. Someone recommended a long and meaty book to me,"Nicholas and Alexandra," by Robert K. Massie. I devoured it and acquired another historical obsession.

Getting fixated on the Romanovs wouldn't have made sense to my Trotskyist great-uncle or his staunchly anti-Communist son, but the more I read the Massie book, the more I saw the Czar and Czarina as struggling parents of a chronically ill child, who had even less time or inclination than other monarchs to focus on matters of state. I didn't dare compare myself to the Czarevich Alexei, but much of his family's experience resonated strongly with my own. And then, another Massie book surfaced at my synagogue's book sale, "Journey."

Bobby Massey, the son of Robert and his wife Suzanne, has hemophilia, and their book tells the intertwined tale of both living with a disease and writing about its impact on world history. Bobby and the Czarevich act as constant reciprocal catalysts for the Massies; each boy's story leads to greater awareness of the other's needs and experiences. As Bobby grows up, his parents battle schools and health care providers to preserve his health and independence, becoming hemophilia advocates on two continents, years before any supporting legislation even existed. As a lesson in activism, I've always thought their memoir should be required reading for the parents of children with disabilities.

Just as the Massies are about to finish their family narrative, they do something unexpected—they leave the book. Actually, they give Bobby a chance to write a final chapter, in his own voice. It's not merely an effective gimmick; it's a vote of confidence in their son, and a strong political statement about the importance of independence in creating a livable future. At the same time I was reading Bobby's chapter, I too was trying to transform my experience of disability, from that of acted-upon object to active subject, so seeing him take the solo spotlight, however briefly, in his family's book was affirming.

In the years after "Journey" was published, Bobby went to divinity school, became an ordained minister and a leading authority on ethical business principles. Like many others with hemophilia, he also contracted HIV and AIDS. Despite significant health problems, he continues to confound expectations; as a leading longterm nonprogressing AIDS survivor, he has had his immune system studied by scientists all over the world. Several years ago, he ran for lieutenant governor of Massachusetts, and charmed voters by talking honestly to them and playing folk songs on his banjo; for this reason, Shawn, who loves music, might call him a sort of positoid Woody Guthrie. In addition to all his other accomplishments, Bob Massie will be noted in history books as the first major political candidate to openly acknowledge having AIDS. He would disdain the label, but he is a pioneer.

I got in the habit of re-reading "Journey" whenever I needed my historical and activist batteries recharged, and I've always felt linked to Bob Massie; a friend of mine worked for his mom years ago, and I was lucky enough to talk with him briefly by phone during a long-ago visit to Boston. As BENT readers know, I think the idea of role models is toxic and counterproductive, but if I were going to recommend one, I'd definitely pick Bob Massie over the cliched and far less ethical candidate, FDR.

Three

When I mentioned Bob Massie to Shawn at the reading, he said he hadn't heard of him. He may even have tossed off a self-deprecating crack about being ignorant of the outside world. But he's no hick stuck in Hannibal. He and his wife Gwenn live in Charlottesville, and they work the college lecture circuit, talking about safe sex, STD's, and HIV. Their most popular presentation is "A Boy, a Girl, and a Virus," which I think should be the title of a movie musical—even if MGM is no longer around to produce it.

I was one of only three people at the reading; I didn't feel as bad for them as I might have because I knew they had drawn a much larger crowd at another bookstore the previous night. Besides, it gave me lots of extra time with them. They talked about activism and the way they use hetero credibility to gain access to audiences who might be less receptive to "more threatening" GLBT speakers. They both had the sensitivity to object to being granted such privilege, but they said as long as audiences gave it to them, they were certainly going to use it, to raise awareness and advance the cause of meaningful sex education.

Being with them inspired me. Gwenn's beauty and long red hair reactivated my Julianne Moore crush, and seeing how they work as such an impassioned yet humorous duo reminded me strongly of Tim Robbins and Susan Sarandon, the celebrity couple I'd probably run off with if I could. I haven't done justice to Shawn's life or words in this piece, but you can. Go to http://www.mypetvirus.com to find out about the book and about hiring Shawn and Gwenn as speakers. If you're lucky, maybe they'll tell you about their nefarious bungled plot to kidnap Al Roker.

I may not be a thinblood or a positoid, but I'm definitely queer, and I think they are too, even if they are in a hetero relationship, because thinblood sex, like positoid sex and crip sex, is still transgressive, no matter how many talented educators try to normalize it. I think education can cast out public fears without eliminating the edge that keeps such sex vital and intriguing; I'm certain Shawn believes in edginess too. After all, he's into Goth music, not Yanni. I don't currently have a pet virus, or a pet anything. However, I do think I have a book coalescing gradually in my head, and I hope mine will be as good as his. We thickblooded Homos on wheels have a story too; once I wrestle mine into being, Shawn will be one guy I'll be happy to count as a reader.

©2006 Danny Kodmur

 

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Danny Kodmur lives, writes, and tries to figure his life out in the Bay Area. He welcomes inquiries from potential friends/husbands/literary agents at profxavier@comcast.net.

 

More by Danny Kodmur

A Soul Clothed in Shining Armor~5/00
How Much Does it Matter? Wrestling with the Metaphysics of Disability ~11/00
On Being (Un)Representative ~1/02
Testing My Faith in Romance ~3/02
No Need to Kick My Tires ~5/02
Balcony Scenes with a Twist ~7/02
Productive Confusion ~7/02
The Music and the Mirror ~9/02
The Music and the Mirror:II ~11/02
Life Under the Spotlight: Disability and Depression ~1/03
On Getting Stuck ~3/03
Of Cities and Closets ~5/03
So How Old Are You, Anyway? ~7/03
Socializing and Sobriety ~9/03
Walking in L.A. ~11/03
Wedding Bell Blues ~3/04
Fortress of Solitude ~7/04
Sound Bodies ~9/04
Fear, Fat, and Fabulousness ~5/05
Picture That: On Seeing and Not Seeing Myself
~9/05

 

 

BENT: A Journal of CripGay Voices/November 2006