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
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
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 unexpectedthey
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.
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.
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 musicaleven 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
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
Let us know what
you think of this BENT feature.
Kodmur lives, writes, and tries to figure his life out in the
Bay Area. He welcomes inquiries from potential friends/husbands/literary
agents at firstname.lastname@example.org.
by Danny Kodmur
Soul Clothed in Shining Armor~5/00
Much Does it Matter? Wrestling with the Metaphysics of Disability
On Being (Un)Representative
Testing My Faith in Romance
No Need to Kick My Tires
Balcony Scenes with a
The Music and the Mirror
The Music and the
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
of Solitude ~7/04
Sound Bodies ~9/04
Fat, and Fabulousness ~5/05
Picture That: On Seeing and Not
Seeing Myself ~9/05