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.


  1. Oh, I understand your fascination with society's misfits. You are a sensitive soul and understand their pain...stay with what reaches your soul,and we will follow.

    love, lorraine

  2. I was really moved by this blog post because I am in the middle of re-reading "To Kill A Mockingbird", in my mind one of the greatest books ever written. The lessons Atticus teaches his children about dealing with all the social misfits and outcasts and disabled and disadvantaged people in their small southern, Depression era town are such important messages. We live in an era when so many people want to deny the reality of many people's lives. They want to blame the victim or take a pill or just pretend those people aren't there.

    There is a writer, Ruth Madison (, who writes about people with disabilities in romantic stories. She is on a personal campaign to include more disabled characters in literature.

    I recently finished your Cannibal Nights and I don't know how you can write about such painful subjects with such sheer poetry. These are stories people need to read. We've got to wake up!

  3. Dear Kathleen...Hooray! TO KILL A MOCKINGBIRD is one of my favorite novels of all times! Thanks for the tip on Ruth Madison, I will look her up. Please check Amazon, I have just posted a review of your magnificent novel, THE OLD MERMAID'S TALE. I hope it sells a million copies!

    Alohas, Kiana

  4. I am so happy to have discovered your blog and your books! There is such depth and such emphasis on humanity that shines through your writing, it’s refreshing. I think our literature and our entire society are heavily influenced by modern media. The positive result of ubiquitous media is that we’ve become a highly visual society. The negative side is that our media bases its stories on ratings and advertising dollars, so we’re inundated with images of photoshopped models that are meant to sell products. With real people turning to plastic surgery to imitate photoshopped images, we’ve got things backward – human beings fleeing from, rather than searching for, diversity in order to understand the human condition.

  5. I think we're in a transition period, as a society - we've rejected the horrible stereotypes of people with disabilties that appear in the "old fashioned" novels you mentioned, but we're still afraid of giving offense. Too many writers feel that only someone with a certain disability is "qualified" to write about it, so these characters get sidelined or omitted altogether. Why not a disabled protagonist? My novel has a protagonist with spina bifida. Got an agent; hopefully I'll have a sale.

  6. Might it be that Nesbo only touches on the character as a nod, and avoids expanding upon her lest the topic of the killers need to encompass that vulnerability in the protagonists life. Or there might be a greater long term plan. I'm unfamiliar with the books, but then I was unfamiliar with yours until yesterday. Yay, social media! :)

  7. @ Mike that's a very interesting take. I was hoping he would expand on her but after three novels where she's gratuitously mentioned I gave up. But your right, maybe down the road. He's extremely good if you like that genre. Dark and intelligent. Hmmmm, maybe I will check into his next one to see if he brings up the Down's Syndrome sister again. She's rather adorable and hip. Thanks for your comments, and if you read my books hope you enjoy!!!! Kiana

  8. @ Marilyn, thanks for your comments. I totally agree about photo-shopped (what happened to the word air-brushed???) No one looks real anymore, and yet the beauty of humans are our diversity!

    @Ramsey...your book sounds fascinating. Most people don't even know what spina bifida is. Much like not understanding what albinism is. I would like to read it when its published. Good luck and keep me posted!

  9. Great post. I think that fiction, "the science of the individual," is always in some way about a misfit, however defined. You don't have a story if there's nothing to overcome.

    Jon Olson
    The Petoskey Stone

  10. I have a prosthetic eye and shunted hydrocephalus - souvenirs of my 24week preemiehood - relatively minor disabilities but I have always felt different, 'less than', and invisible as a woman. Out of all of your books I loved House of Many Gods the best because the female protagonist wasn't 'perfect' - I could relate to her unlike the standard 'pretty woman' heroines. Women who are not completely able bodied with no parts missing and what society considers attractive are almost always invisible in fiction as they are invisible in life, or relegated to drudge roles, killed off early(as in some of Stephen King's books), and considered unworthy of a man's love, even while the 'beauty and the beast'(beautiful woman plus 'ugly' man) archetype lives on.

  11. Aloha Jon Olson..sorry for delay in responding! My lawyers have had me muzzled for several months, no blogging, no interviews. But I am about to be un-muzzled! Your comments are always interesting, here and on Joe's blogsite. I agree with you good fiction is always in some way about a 'misfit,' there must always be obstacles to overcome. Hope you are writing up a storm! Happy New Year!

  12. My dear Kunchog...I am sorry for delay in responding. I have had legal issues to resolve. But I have read and thought about your comments many times. I have a cousin also born a preemie... she has had many physical problems to overcome, including severe speech impediments. For years she did not leave her house. Then someone she loved died, and she began to understand how precious life is. A gift we are only given once. Thru the years she has changed remarkably, taken herself out of the house and at 45 has begun to get involved in local politics. She has 'reborn' herself. are NOT invisible. You are a human being and carry within you something unique and divine. You only make yourself FEEL invisible because of your seeming 'differentness.' Society does that to us. Most people are afraid of death, and 'perfect beauty' is the antithesis of death. Anything different or 'abnormal' scares people, makes them think of their frailties and that one day they'll die. We are all guilty of this fear and so we step away from those who are 'different.'

    You need to try to overcome how you 'imagine' people see you. Imagine instead how YOU see yourself and try to project that image. I would ask you to even try to be rather aggressive if you can. MAKE people notice you, let them see you have wonderful traits, humor, gentleness, that compensate for what they see as 'shortcomings.' I know it is easy to give advice, and so forgive me.

    I once knew a man with one thumb and a glass eye. How I loved his humor! He had so much self-confidence he made other men shy. My Indian friend, Bazil, is in love with an Afghani girl who has no nose, and no ears. Her family cut them off when she tried to escape from her cruel father. When Bazil first saw her there was a huge hole in her face, just eyes and mouth (I have seen a photograph).

    I asked him what he fell in love with. He said, "Her spirit, her ferocity. She knew she risked death or butchery if she tried to escape her village.
    Well, she survived by crawling thru fields for days, nearly dead when the Red Cross found her. She was sent to Mumbai, India for reconstruction. Bazil has fallen in love with a female who will never look outwardly 'normal. ' He says all her beauty is within. What attracted him to this poor girl? Again, her inner fire. Such confidence speaks volumes.

    I could go on and on, but this is a public forum. Will you email me, Kunchog, I want to see if I can encourage you to start writing a journal or even a memoir. As I said in my blog above, we need more books written by, and about, people who are mentally or physically 'challenged' in society. If you read my books (I thank you) then I already know you are a book lover, and that is the first step to becoming a writer.

    I don't know if I have helped you, but please let me continue to try. With alohas from Hawaii, your friend, Kiana

  13. Your humanity continues to shine through, babe.

  14. Wonderful post, but just a quick comment (coming from a mother of a child with Down syndrome). It's Down syndrome, not Down's.

    Any way, thank you for the nod. I agree, I wish Sis would play a bigger part. She is fun, and reminds me of my Katy (who is only 8, but is a pistol). I think she should be used to center Harry Hole a little more, keeping him from his dark places a little bit.

  15. Dear Kyle...thank you for the correction!! I can't believe I kept referring to it as Down's. I know better than that. Please accept my apology. Sometimes I get so caught up in my subject matter I overlook mispellings.

    I actually thought of writing Jo Nesbo, and have encouraged my readers to do so, as well, about enlarging the role of Sis, or even writing an entire book about her. Curious to see how he responds. As I wrote above, my new novel has a hero who suffers from albinism, based on the life of a dear friend. Knowing him as enlarged and enriched my life. As I'm sure Kay has enriched yours. I wish you both all the happiness in the world.

    Sending my love to both of you! With alohas from Hawaii, Kiana