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When you are totally
blind
By Linda
Matchan, Globe Staff, 12/20/2001
When
you are totally blind, as Sarah Smith is, and you're also a folk musician,
dance and music teacher, graduate school student, advocate for people with
disabilities and for guide dogs, soup kitchen volunteer, and occasional
contra dance caller, gardener, and house builder, you have to organize
your life very systematically. Smith, 53, is nothing if not systematic.
Consider her house. She's lived on the top floor of this 200-year-old Georgian
here in downtown Salem with her musician husband Bill for 23 years, ever
since she lost her vision due to complications from diabetes. It's not
the most user-friendly house for someone without vision: It has a steep
staircase that takes a sharp right turn; compact rooms; and an uneven front
sidewalk. Smith, however, has the logistics of her life down to a science.
The furniture arrangement is, as she puts it, ''centrifugal.'' Everything
is placed against the wall to minimize stumbling every chair, table, and
musical instrument, ranging from her double bass to her husband's Appalachian
dulcimer, banjos, mandolin and guitar. 'It's not that I don't want to hurt
myself,'' she explains. ''It's just that I refuse to move slowly. And there
are all those instruments I don't want to destroy.'' Every household object
has its special place. Scissors must go in the scissors drawer, the day's
mail always sits on one end of the kitchen table and migrates to a living
room table after Bill has read it. Her guide dog's harness hangs just outside
the front door, on the first hook. Spice bottles are alphabetically arranged
on a kitchen shelf and labeled in braille. The Christmas tree goes in a
corner and is decorated, as always, with ''a wonderful collection'' of
ornaments friends have given them over the years. ''I love the tree for
the smell, and also for the tactile part of it,'' says Smith. ''I can tell
you volumes about each ornament.'' Smith's spirited, upbeat approach to
living life with a disability was one of the reasons she became the subject
of a new children's book, ''Looking Out for Sarah'' (Charlesbridge Publishing),
by Cambridge writer and illustrator Glenna Lang. It is a picture book about
a day in the life of a seeing-eye dog and his person, from the dog's point
of view. (''Left, Perry,'' said Sarah. As they strode down the sidewalk,
Perry pulled to the side to sniff a tasty crumb. He knew he shouldn't eat
on the job, but he hoped Sarah wouldn't mind just once.'')
Lang
spent six months shadowing Smith. Her book depicts the way Perry, the guide
dog, helps Smith maneuver around Salem and beyond, taking the train, meeting
with friends, visiting an elementary school to sing for students and tell
them about life with a guide dog. It describes how, in 1994, Sarah and
Perry walked 300 miles to Manhattan to raise awareness about guide dogs
and meet Mayor Rudolph Giuliani. Lang says she got the idea for the book
''many, many years ago. It was one of those ideas you carry around with
you a long, long time.'' She interviewed several people with guide dogs
and was immediately impressed with Smith's energy and good cheer. She ''fell
in love'' with Perry, a black Labrador retriever. ''Sarah is charismatic
and dynamic,'' says Lang. ''She is quite an inspiration. It's just amazing
that someone in her situation is not at all slowed down, as far as I can
see. I always forget that she's blind. She doesn't act blind. I know she
can't read the book, but the amazing thing is I feel that she can. She
really listens to what people have to say and has a full imagination.''
Sarah Smith was a strong presence in Salem even before there was a book
about her. Part of it is her extroverted nature, her awareness and acceptance
of the fact that people are fascinated by guide dogs, and her eagerness
to talk about how they work together as a team. ''She's such an accessible
person,'' says Eleanor Rubin, coordinator of access for the Museum of Fine
Arts, where Smith is a member of the access advisory board. ''This summer,
I took a walk with her through her neighborhood, and it was very slow going
because everyone wanted to stop and say hello. She's a very distinctive
figure.''
Smith,
who is most comfortable in blue jeans or overalls, is aware that she and
her dog make a handsome couple, and she's proud of it. (Her beloved Perry
died a few months ago; her new guide dog, ''a great companion,'' is Garran.)
''There is a whole different feeling when you're going with a dog as opposed
to poking along with a cane,'' says Smith. ''I feel like I'm on my own
track. I'm really in charge, whereas with a cane I feel as though I'm basically
tracing my way along from obstacle to obstacle. I never feel as proud;
I feel self-conscious. But with such a handsome dog, I'm a world beater!
We look fabulous!'' Another reason she's well known is that she moves in
many circles, from volunteering at a local soup kitchen to calling contra
dances, an activity for which she says she's perfectly suited: ''One thing
I know about myself is that I'm very outgoing and I really like the limelight,''
she says. ''I was the middle kid in a boisterous family.'' She and her
husband both sing and play a variety of instruments and perform traditional
folk music at coffeehouses in the North Shore and at community events.
Every other year, they produce and perform at Salem's ''Yuletide Festival,''
a celebration of the winter solstice that this year took place Dec. 9.
Trained as a teacher, she works part time as an ''itinerant teacher'' of
music and dance in North Shore schools. She is also, by her own definition,
an ''overachiever'' and someone ''always charging into adventures,'' which
is one of the reasons why she is helping her husband, a woodworker, build
a new house on the coast of Maine. ''It's not like she's just supervising,''
says Lang. ''She's working with a hammer and nails, and doing the framing.''
It's also why she has recently undertaken one of the biggest challenges
of her life: entering a master's degree program in social work at Salem
State College. ''You know, last time I went to school, I could see,'' says
Smith. ''My first year (of studying social work) was probably the hardest
thing I've ever done. The first semester, I would cry twice a day.'' She
says studying is slow and onerous, made possible by textbooks on tape,
the assistance of ''the most generous people who read to me,'' the fact
that she has an ''incredible memory,'' and technology. Salem State has
given her access to a library database ''because it's easier to work at
home.'' She also takes her exams at home, and sends them in by e-mail.
She works in the upstairs office she calls her ''nerve center.'' Ascending
the stairs gingerly (''Garran loves stuffed animals and sometimes drops
them on the stairs.''), she welcomes a visitor into the office where her
computer is outfitted with special text-to-speech translation software
that reads her e-mails to her at high speed, though in an affectless drone.
A person not dependent on such software easily might be irked by the monotony
of the voice. Not Sarah Smith. ''I don't get sick of it,'' she says. ''It
is such a gift. I don't resent it at all. The fact that it's not terribly
well-inflected is nothing. '' She also counts her blessings. Yes, she is
totally blind, lacking any sort of light perception. ''I travel in a totally
dark world,'' as she puts it. But having lived both with vision and without
it, she's discovered that ''vision robs people of other senses,'' like
the rich sounds and smells they overlook because vision tends to overpower
them. Having vision is ''like having a loud talker in the room,'' she says.
''My perception of the world is very, very vivid, except it doesn't include
vision.'' She has resigned herself to her blindness through a combination
of ''denial and acceptance.'' She has known depression from time to time,
but in general she considers herself a ''happy hooligan.'' ''There are
many, many terrible things that happen to people, and your life isn't over,''
she says. ''You don't have to fix everything. You realize you may have
this extra baggage, but it doesn't have to be in front of you. It can be
beside you.'' This story ran on page H1 of the Boston Globe on 12/20/2001.
Copyright 2001 Globe Newspaper Company.
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