In 1998 I published a memoir entitled “Planet of the Blind” and much to my delight some good reviewers praised the book.  The memoir received strong reviews in The New York Times and USA Today and suddenly I was invited to be a guest on National Public Radio’s superb program “Talk of the Nation”.

This was heady stuff for a guy who had been writing poetry for 18 years.  In the poetry world you are very lucky if you have a hundred readers and let me tell you, 100 readers is pretty much beyond the wildest dreams of most of the talented and deserving poets I’ve met along the road.

Each time something good happened where the book was concerned my wife would say, jokingly, “Yeah, that’s great; just let me know when Oprah calls”  We would chuckle about that.

The reason we’d laugh about Oprah is that “Planet of the Blind” is not the kind of book that haunts the bestseller lists.  The book isn’t lurid; it’s not angry; it doesn’t even have much of a plot.  In fact it’s such an odd book that it’s difficult to describe.  It’s in part a history of blindness in America and part a “coming of age” story by a writer who largely grew up feeling ashamed of his blindness.  The story isn’t particularly unusual and even worse from a sales standpoint; I have an addiction for big words. 

Still there was a “memoir craze” taking place in America in the
1990’s and my book was the beneficiary of the general public interest
in autobiographies by people who hail from historically marginalized
cultures.  American readers were interested in finding out about Maxine
Hong Kingston’s Chinese-American family or Lucy Grealey’s experiences
growing up with a facial disfigurement.  We were amazed to see how Mary
Karr survived her childhood in a desolate part of Texas.  These books
represented a new kind of popular nonfiction because they were all
written by what I can only describe as “literary” writers.  All of the
memoirists I’ve alluded to were poets or fiction writers before they
decided to write autobiographies.

During the winter and spring of ’98 “Planet of the Blind” got the
sort of attention that few writers dare to expect and I kept pinching
myself.  I did what any respectable long suffering poet would do: I
bought a new overcoat.

Then a genuinely weird thing happened: the “big media” discovered
the book. I was approached by NBC’s primetime program “Dateline” with a
pitch for a story about my life.   

I raced home from a book tour event in Boston to meet a squadron of
NBC camera men and sound technicians who were hastily turning our house
into a television studio.  Who knew that a leaky valve in an upstairs
toilet could interfere with the sound?  Someone grabbed an adjustable
wrench and fixed the plumbing.  Black air raid curtains were draped
over the windows.  Cables and lights and cameras were everywhere and
our kitchen looked like NASA’s mission control center with engineers
hunched at their video consoles.

The writer with his new Bean town overcoat was stunned.

And that state of wonder was his first mistake.

This formerly unknown poet was so excited to be in the media spotlight he couldn’t forecast what was coming next.

With the cameras rolling and no advance warning, the Dateline
correspondent (a tall, handsome fellow named Rob Stafford) looked me in
the eye and asked me if it was fair to say that my childhood efforts to
pass as a sighted person were essentially a lie.

I smiled and said “Yeah, I suppose you could say that.”  I went on
to explain that kids with disabilities in the 1940’s and ‘50’s were
expected to live marginalized lives and they weren’t encouraged to
attend public schools.  I pointed out that the parents of this post
World War II generation of disabled children had almost no resources or
skills for navigating the complexities of disability.  I said that lots
of parents in those days tried to encourage their kids to downplay
their disabilities and to emphasize their normality.  I talked with
assurance about how things are better nowadays.

But it didn’t matter what I said.  I had committed the first
mistake.  I had genially agreed with “Dateline” that my formative life
was just “a lie”.

Over the next two days the Dateline team filmed me working my guide
dog “Corky” on the streets of New York City.  We went to an art gallery
with my friend, the painter Olga Hiiva.  We went to Ben Benson’s famous
steakhouse where I met Ed Koch, the feisty and generous former Mayor.
We rode subways all over town with our lights and cameras. 

But when the segment finally aired almost the entire Interview was
gone.  I was presented as a man who had been living a devastating lie.
My book was scarcely mentioned.  My comments about the real lives of
people with disabilities had been erased. 

I have to point out that nowhere in Planet of the Blind does
it say that trying to be normal was “a lie”—in fact I wrote about the
complex pain that my blindness caused for my parents and the distress
this produced in me.  I described the problems that blind children
experience.  I depicted the moments in childhood when I tried daredevil
stunts just like every kid.

I was shocked by the tabloidization of my book and my life.  I
turned to my wife Connie as the credits were rolling and said, “I don’t
think I can ever go outdoors again.”

That’s when the phone rang.  It was The Oprah Winfrey Show calling to invite me to appear as a guest on an upcoming show about “families with secrets”.

Oprah’s producers had seen the Dateline segment.  I was the blind
kid who had lived a terrible lie.  I rode a bicycle even though I
couldn’t really see what was in front of me.   I was the perfect “final
guest” for a program about dysfunctional families.

One needs to understand that all blind kids tryout bicycles and
climb trees.  I took some risks in my boyhood that probably shouldn’t
have been encouraged (like driving a motor boat alone) but even that’s
not a very remarkable story.

While my family didn’t have an emotional vocabulary for blindness we
never pretended I could see like everybody else.  One could argue that
my parents participated in a kind of benign neglect.  But that’s really
about all you can say.  There was no “dark secret” in my family; no
indefensible denial of disability.

Planet of the Blind is clear about the fact that my parents
couldn’t help me be a successful blind person. It’s also direct about
the psychological costs of having a disability and trying to deny it.

But by God, I was now the “tabloid” sensation “du jour”—a blind man
who lived like a sighted person–a liar, a man whose very existence was
a “miracle”.

I was in trouble.  TV Land was spinning me out of recognition.

I called the Oprah producer and told her that I couldn’t be on the show.

I called my literary agent and told her that I said no to Oprah.

Then I called my editor at Random House and left her a message.

How could I possibly go on with this wrongful representation of my book and my life?

My friends thought I was crazy.  Who wouldn’t want to be on “The Oprah Winfrey Show”?  (She can move books!)

I tried to explain how bad I thought this proposed program would be.

"Families with secrets," I cried.  "You know, people with separate
sets of children and multiple hidden wives—or worse, people who
kidnapped their children from foreign countries—you have no idea how
bad this could really be!"   

My publisher told me I needed to get my head examined.  They told me
to call the Oprah people and discuss what would make the most sense.

“Okay,” I thought.  “I can set some parameters.”

Oprah’s producer was a kindly young woman who said that she
absolutely understood my concerns about appearing on a show about
troubled families.  She wondered what it would take for me to change my
mind.

I said that I’d like the segment to focus on the book.  That I
didn’t want to reprise what “Dateline” had done.  I said that I didn’t
want my parents to be portrayed as ignoble or reckless people.  I said
that I’d like to be introduced as a person who worked on behalf of
people with disabilities.

“Yes,” she said. “We can do that.”

And so, only a week after the Dateline show I found myself on Oprah Winfrey’s set with a new circle of cameras.

And darned if Oprah and her producer didn’t reprise the Dateline narrative word for word. “Here’s a man who lived a Lie!”

What followed was a twenty minute game of rhetorical medicine ball.
It was clear that Oprah hadn’t read my book.  She replicated the
“Dateline” presentation without mentioning anything in the book.  I was
trapped in the pre-planned tabloid methodology of the program.

I had learned something from the NBC experience and I refused to let
Oprah characterize the book or my life as something lurid.  I talked
about the internet and the support organizations for today’s parents of
visually impaired kids.  I mentioned advocacy organizations.  I tried
hard to lift the thing out of a tabloid lobster tank of cheap scandal.

I had been assured that Oprah wouldn’t drag my parents into it.  But
she made them into a spectacle and asked my father (who was dutifully
seated in the front row) “How could you let him ride a bike?”

She asked this like someone wondering how a nun could take up pole dancing in public.  Oprah was scandalized.

My dad said the right thing: “Well, he wanted to do it.”

I’m mindful of the fact that complaining about being on “big time”
TV is risky.  The phrase “poor little rich boy” comes to mind.

But The Oprah Winfrey Show and Dateline essentially
packaged my disability story as a quasi freak show— a kind of “Ripley’s
Believe It or Not” rare find.  The story was reduced to being something
without social or historical context and was framed by my agreement
with Rob Stafford that my efforts to live like sighted people had been
“a lie”.

That was my introduction to tabloid TV.  I’ve never forgotten it.
Sometimes I haul out the video tapes and show them to my college
students when we’re talking about disability studies.  What’s
interesting (and perhaps reassuring) is that my students always groan
at how bad these TV programs managed my story and my book.

I don’t think that Oprah Winfrey or Rob Stafford are insensitive
people.  I tend to believe that despite their respective media
prominence they are both subject to the unwritten but very real rules
of tabloid TV.  These strictures dictate that “human interest” stories
must be presented to television viewers in quick bursts of dramatic
suffering.  And it helps if the person whose story is being told is a
victim of social forces or a natural disaster.  The “promo ads” for
these shows (which run for about 15seconds) depend entirely on two
dimensional melodramas. 

I can’t wait for a TV network by and for people with disabilities.
The mainstream media still doesn’t get us.  Not at all.  What’s worse
is that the mainstream TV folks keep packaging disability as a dreadful
misfortune, something to be overcome with faith or heroism or a howl of
victimhood.

Stephen Kuusisto

P.S.  Oprah, it’s not too late you know.