[Missouri-l] Vision Beyond Sight

[peter altschul]

  Visions beyond sight
  Two Columbia artists share their writing and their lives in the 
"Blindness isn't Black" anthology of artists with disabilities.
  Photo by Parker Eshelman
  DeAnna Quietwater Noriega with Olsen at her farm outside 
Fulton.  She's one of two Columbia artists share their writing 
and their lives in the 8Blness isn't Black" anthology of artists 
with disabilities.
  By Lindsey Howald Sunday, March 29, 2009
  Standing in the doorway of her farmhouse in Fulton with Olsen, 
a German shepherd seeing-eye dog, at her side, DeAnna Quietwater 
Noriega squints just slightly against the bright early-morning 
sunlight.
  Photo by Nick King
  Gretchen Maune is a visually impaired poet whose work was 
published in a recent anthology.  Maune, 26, lost her sight more 
than two years ago due to a hereditary and very rare degenerative 
disease.  Both of her eyes are, of course, prosthetics.  The 
right one was removed before she reached age 10, the left, just 
six years ago when it hemorrhaged.  Born with glaucoma, Noriega 
has been unable to see a thing since the age of 8.  But, as she 
writes in one of her poems, blindness isn't black.  Although it's 
different for everyone, Noriega sees a bright shimmer.  
Sometimes, movement.  Other times, she says, her brain will kick 
in an image of its own, and she'll glimpse a shape -- just like a 
person with a phantom limb.
  "Blindness Isn't Black"
  What: An anthology of work by Missouri writers and artists who 
have disabilities (VSA arts of Missouri, 2009)
  That's only half of the meaning of the poem, which was recently 
published in "Blindness isn't Black," an anthology of work by 
Missouri artists and writers with disabilities.  Not only does 
Noriega not walk in literal darkness, but she also has never 
given in to depression or despair.  An 8-year-old's rebound rate 
from misfortune is about a week, she says with a laugh, and after 
that, Noriega was back to riding ponies, helping her mother 
around the house and climbing trees on the American Indian 
reservation where she lived.
  "Blindness is a characteristic, like the color of my hair or 
the shape of my hand," she says.  "It isn't the sum total of who 
I am."
  When Noriega speaks, it's with a light, sweet tone that belies 
not at all her 60 years.  The lyrical poems and rhythmic, 
anecdotal essays this half-Chippewa, half-Apache social worker, 
advocate and poet writes are part of her heritage and a cherished 
hobby.  Born the eldest in a poor military family that moved 
every few years, Noriega learned not only to care for her 
siblings, but also entertain them with stories.  She has never 
felt disabled or broken -- at least no more than a short person 
having to use a ladder to reach a high shelf, she says.  Her 
great-grandmother gave her Quietwater, her Chippewa name, as a 
nod to her peace.  "What it meant to her was" that "a quiet water 
day is a day when it's beautiful, and calm, and serene, and you 
can take a birch bark canoe out on the Great Lakes and not 
drown," Noriega says.  "So in essence, she was telling me that I 
was perfect just as I was.  That there's nothing wrong with me.  
And that's a great gift for a disabled child to be given."
  Blindness from the Inside Looking Out
  After the pain was gone, The vision of the mind still remained.  
Now I walk through my world, Beautiful big brown eyes looking 
out, Non seeing prosthetics.  I know where you and the doorway 
are, The room is long and narrow.  I don't live in darkness.  I 
don't require eyes to see you.  My blindness isn't black.  My 
eyes still tear up at the brightness.  They don't see like 
plastic.  They still watch the dancing color show.
  Excerpt from "Blindness from the Inside Looking Out" by DeAnna 
Quietwater Noriega (from "Blindness Isn't Black")
  That same gift is something Noriega, in turn, strives to impart 
to others.  There are her children and grandchildren to be 
encouraged.  There are other disabled writers and poets with whom 
Noriega communicates through online and teleconference workshops.  
There are others, too, like the 70-year-old former lobsterman 
Noriega met at church, who prayed to God to heal his sight and 
was disappointed when he didn't.  She pointedly told him, "He 
has.  You're here. ...  You're ready to pick up and move on from 
where you are, trusting that God has his reasons.  He didn't need 
another lobsterman.  So now your job is to find out what he does 
need from you."
  GRETCHEN THE GREAT Twenty-six-year-old Gretchen Maune's poem 
"The Birth of an Idea" is separated by one of Noriega's by a mere 
four pages in "Blindness Isn't Black." The two met at an outreach 
meeting for the visually impaired in September in Columbia, and 
since then Noriega has acted as Maune's mentor.  When she was 
very young, Maune drew herself into a series of hardcover -- 
cardboard, that is -- superhero comic books.  These were the 
adventures of Gretchen the Great, depicted entirely in red 
crayon.  The superhero version of Gretchen could fly; the real 
one had perfect eyesight.  It was a point of pride that she could 
always read the vision chart right down to the bottom line.
  The Birth of an Idea
  Softly huddled in a fine scent, Wrapped for beauty and for 
wonderment, the comely petals curl on cue, unveiled vivid violet 
of new.  An infant aroma floats on a word, sweetly inhaled, while 
seldom heard the velvet scraps caress sun-beams, the wood is 
brighter, mightier it seems.  The thought, the magic, happened so 
soon, But of course, its nature is to bloom.
  "The Birth of an Idea," by Gretchen Maune (from "Blindness 
Isn't Black")
  So for Maune, the months leading up to her loss of sight are 
crystallized powerfully in her memory.  Two and a half years ago, 
while applying eyeliner in her boyfriend Kyle's mirror before 
going for sushi at Osaka, she noticed that when she closed her 
right eye, she could hardly see.  For the next month, Maune 
endured glaucoma tests, blood tests, MRI's and more.  When 
doctors covered her right eye and asked her to read the vision 
chart, all she could make out now was that one gigantic "E." 
Finally, two days before her 24th birthday, she was given her 
diagnosis: a very rare, degenerative disease called Leber's 
hereditary optic neuropathy.  Only one in 30,000 to 50,000 have 
it, and of that number, a tiny percentage of those are women.  
"So, basically, I won the lottery, so to speak," Maune says with 
a rueful smile.  Her right eye followed quickly, and within two 
months, she was legally blind, although her sight continued to 
deteriorate throughout the year.  It would be an understatement 
to say that much changed in Maune's life, and quickly.  "I was 
totally mad at the world.  And still am, sometimes," says Maune, 
whose blindness, rather than being black, is a fuzzy, nondescript 
color that she says reminds her of a really thick photo filter.  
"Angry at the way people treat me; angry at the way the world is 
not made for a non-sighted person; angry that cell phones aren't 
made for visually impaired people; angry that video games aren't 
made for visually impaired people; angry that my options are so 
limited now; angry that sidewalks are broken and I twist my 
ankle; angry that cars pull up over crosswalks and I bump into 
them.  and Angry at so many things, you know? But less than 
before.  It does suck, but I deal with it a lot better now."
  USE YOUR GIFTS
  Like Noriega, poetry has always been a part of Maune's life, 
beginning when her mother would read to her from "A Children's 
Book of Verse." She won her first poetry contest at the age of 
10.  When she lost her sight, however, Maune's writing stalled as 
she struggled to adapt.  So when Noriega sent her a small nudge 
-- the VSA arts of Missouri call for entries by Missouri writers 
and artists with disabilities -- she ignored it.  "Anything that 
was hard or made me remember anything about before, I didn't want 
to do," Maune said.  Then, Noriega talked me into it.  She said, 
"Look.  Just open your poetry folder on your computer.  And just 
find something, anything." and It was the first time I had looked 
at my poetry in a really long time, and it changed a lot for me 
because I'm writing again.  and I feel like a good writer again."
  Before losing her sight, she planned to graduate with her 
English degree from the University of Missouri and then go on to 
pursue master's and doctorate degrees in poetry.  Lately, 
however, even as she works to complete her undergraduate degree, 
her interests have shifted toward the political.  In part 
inspired by Noriega, who is the legislative liaison for Services 
for Independent Living, Maune has already begun to work toward 
incremental changes.  One mark she's already made can be seen in 
Lowry Hall on the MU campus, where Braille numbers are being 
installed in the elevator in response to her request.  "I want to 
be able to do everything that I used to be able to do," Maune 
says firmly.  It was, in large part, thanks to Noriega's 
encouragement that Maune stopped hiding in her apartment and 
began to thread back together the strands of her former life.  
"You get out of life what you put into it," Noriega says.  You 
c"ment bfeel sorry for yourself because you don't have it all 
because nobody does.  Nobody gets everything.  We'd all love to 
be beautiful and brilliant and talented, but each of us is given 
a set of gifts, and part of life is to try and figure out what to 
do with those.  And to make the world a little better place for 
your having been born into it."
  Reach Lindsey Howald at 573-815-1731 or e-mail 
lhowald at columbiatribune.com.