Monday, October 3, 2011


Hello World.

 Today is Sunday,  'BREAKING BAD' day. I have loved this AMC  series since day one.  Brilliant, shocking. Hilarious. Television as God meant it to be. Alas, this  fourth season is a drag, no philosophical dialogues, no heart-wrenching moral decisions. Just good-guy, bad-guy meth cookers and dealers. And Walter White, former hero,  becoming the creep you love to hate.  Still,  there is Walter White's son, a handsome boy impaired by teenage angst and celebral palsy. The dreamily handsome young actor,  RJ Mitte, who plays the son does, in fact, have cerebral palsy.

This  is  innovation: The first major television series featuring an actor with a genuine disability.  Watching the show each week - RJ Mitte  struggling with his crutches,  his slow walk,  his hesitant enunciations - we become aware of a  huge demographic missing in the media. Where are the physically and/or mentally challenged people that are so much a part of our society?

Though I loved Tom Hanks in 'FORREST GUMP,' the retarded Gump was super-sized,  a Disney-like character  who made millions of dollars,  publicly mooned LBJ in gratitude for Vietnam,  and married the girl of his dreams.  A fairy tale.

But,  remember 'I AM SAM' starring  Sean Penn? A beautiful Oscar-worthy movie, about a retarded man fighting for custody of his child.  Perhaps it too bordered on the fairy tale with its happy ending. But here is the difference... the cast was made up of real,  mentally-challenged men who  played Sam's buddies.  Their halted speech and sly, tender taunts, made the movie memorable, human,  deeply touching.

So now  we turn to books:  Jo Nesbo,  author of  international bestsellers, THE SNOWMAN, REDBREAST, DEVIL'S STAR,  is currently the reigning bad boy of Norwegian  crime fiction.  His body of Nordic Noir is based on  highly  creative serial killers,  much blood and gore.  Nesbo is  good, he's excellent.  But here is what lures me into his  books. In each novel,  Harry Hole,  the alcoholic detective- hero  visits his sister, Sis, who has Down's Syndrome.  Sis is functional,  she has a boyfriend,  she babysits,  she makes meatballs.  But, of Sis,  that is all we ever know.

I  am curious about  Nesbo's nod  to Down's Syndrome,  how  in each book he dutifully  mentions  'Sis,'  her boyfriend, her little accomplishments,  all whittled down to one  meager paragraph.  Then back to the serial killers.  As a reader,  I find this puzzling, even  gratuitous. As a person with Down's Syndrome,  I would find it insulting.  Perhaps it is an acknowledgement to someone the author  knows and loves. (As  Walter White's son is an acknowledgement to someone the series creator knew and loved.)  So I wonder why then Sis can't be a fully fleshed-out character  in Nesbo's novels,  one who  happens to suffer  from a congenital disorder caused by the presence of an extra  chromosone, which causes a mild to moderate  mental retardation. If such a sister functions in real life,  why can't she function as a character in a novel?

I don't know,  perhaps I am reaching.  What I would like to see  is more media,  especially novels, involving  characters  with real disabilities.  If we  write bestsellers  about  apocalyptic  wars, ethnic cleansing, mass mutilations, how is it we cannot write books  featuring main characters  with disabilities?  Last  week in a small Texas  town, a girl named Marian Slick was crowned Homecoming Queen at half-time during a football game. Cheerleaders wept with joy.  Thousands of spectators stood and cheered as      she steadied her crown and waved to her fans.  Marian  Slick  has Down's Syndrome.

All right,  maybe that's  too feel-good for a novel, or  movie of the week.  But I'm thinking of all the  other millions of people in the world with various disabilities, who manage to function and even procreate as  normally as their lives and society allows them.  What are their stories,  their  comedies and  tragedies? If they are characters in their daily lives,  may they not also be characters in literature?

 My cousin Malia  feels I  am going to  extremes,  that I am taking a Diane Arbus approach in my writing,  only highlighting society's misfits.  In my first  story collection,  HOUSE OF SKIN,  I wrote about  skinned, tattooed humans,  drug addiction,  paraplegics,  dysfunctional families.  In the second collection,  CANNIBAL NIGHTS,  I write about  assassins,  mass rape, incest, fetal alcohol syndrome. (I also write about love,  the loss of it, the search for it,  the human need for it, which is how humans transcend themselves.)

I argue that these are real stories, about real people,  I cannot write fairy tales. And so we come  to  my dear friend,  Andre,  whom  I have written about earlier  in these  blog-postings, and who  has given me permission to write a  fictionalized version of his life.  Andre is a handsome man,  a world-class online poker player. A lover of books,  an FBI profiler.  He also suffers from the condition known as albinism.  The lesser-prefered term is albino.  Andre is  uniformly pale almost to transparency.  His eyes are pale,  his thick  hair the color of butter.  In grade school his nickname was Vanilla.

In writing a novel  about Andre am I being opportunistic?  Sensationalistic?  No.  My hope is that I can introduce readers to a  sympathetic yet fascinating character who suffers from a condition most people don't understand, and maybe along the way educate them to what albinism is: the inheritance of two recessive genes that  prevent the body from changing the amino acid tyrosine into pigment.

I can think of old-fashioned  novels with disabled characters,  a congenitally blind detective,  a surgeon  born without a leg. An autistic soldier-hero. But I can't think of many  contemporary novels with such characters.  I  would love to see more.  If they exist,  I hope readers will  bring me up to date in your comments.  There a millions of stories waiting to be told,  based on lives of people who,  because of their disabilities,  remain invisible in society. We see them, but do not really SEE them. We do not  record them. Because of this our literature,  and our society,  suffers.  And readers are left less enriched.

 Our lives are just a moment in time,  a quick little dance of particles. The beauty of humans is our infinite variation.  Our abilities, inabilities, and disabilities.  Perhaps  its time to step out of this  mental Ice Age of fiction and let our characters reflect real people, all the spurious and genuine and tragic facets  of each life.

Herman Melvile said, "What shall be Grand  in thee must needs be plucked at from the skies, and dived for in our depths,  and featured in the unbodied air."

 We are in a creative universe.  Let us then create.

Thank you.