March 17, 2005
IN
THE NEWS | STAGE DOOR | THE HUM | CALENDAR
On the cover:
Lauren Favor, blind Arcata resident, walks with her guide dog
Riva.
Living blind:
How five sight-impaired residents view their world
by HELEN
SANDERSON
photos by BOB DORAN
While visually impaired people
have their limitations, those in the blind community on the North
Coast are finding many ways to work, travel and communicate.
Here's what five legally blind residents had to say about their
lives without sight in Humboldt County.
A Corn Flakes cereal box. A
bird flying overhead. Phone poles whizzing by the window of a
moving car. Simple snapshots of everyday life like these are
taken for granted by most people.
For Doug Rose, 46, a blind McKinleyville
resident and co-owner of RosePond Aquatics, those three ordinary
scenes are rare treasures. A handful of sights from his early
childhood spent on his family's farm in Nebraska are the only
visual memories he has.
[Photo at right:
Doug Rose demonstrates
how a TeleSensory magnifier works.]
The man's unhurried, patient
demeanor lends to an air of quiet confidence. He talks deliberately,
slowly even, and listens intently, usually with his head tilted
to the side, his gaze directed somewhere toward the floor, blinking
a bit more rapidly than a sighted person would.
"I feel like I can remember
some colors: I know red was my favorite. I know I had a black
dog," Rose recalled, sitting in the small Eureka office
where he works part-time for the LightHouse of the North Coast,
a resource center for visually impaired people.
By the time Rose was 5 years
old his world had turned black. Cancer overtook his eyes and
he was fitted with prosthetic ones before he reached kindergarten.
His plastic eyes (they're not glass, as people assume) are not
receptive to light, meaning that he has lived in darkness for
more than 40 years.
Recently, he was told by a doctor
that since light, like sunshine, boosts the brain's levels of
serotonin -- one of the body's natural "good mood"
neurotransmitters -- the depression and anxiety he has experienced
over the years is likely related to his inability to distinguish
any illumination. Rose explained that sometimes he would have
panic attacks that made it difficult to do everyday activities
like taking the bus to work.
His counselor in Arcata suggested
a small dose of Lexapro, an anti-depressant and anti-anxiety
drug. The medication, which he has been using for a few months,
has diminished his stress level, Rose said.
"I guess that my whole
life I just learned to adapt to those sorts of feelings the best
I could," he said.
Adaptation
might be the best way to sum up how sight-impaired people do
everything from cooking to surfing the Internet.
[Photo, left: A
Braille board for beginners represents the letter N.]
For instance, a way to keep
track of different types of cans in the cupboard is with rubber
bands -- a single banded can might signify chicken noodle soup,
two bands for corn, and so on.
Teaching visually impaired people
how to do both complicated and simple tasks is part of the mission
of the LightHouse, a San Francisco-based nonprofit. Rose
has worked as an outreach coordinator and an assistive technology
instructor there since 2002, when the Eureka office opened.
Assistive technology, often
called "AT," has helped blind people clear hurdles
that just a few years ago seemed impassable without the help
of a sighted person.
One popular AT device is a speech
output screen reader called JAWS. A computerized voice reads
the text on a document or Web site, and certain keyboard commands
let the user bypass Web advertisements to jump to links, search
boxes or the body of a story. E-mail can also be sent and received
this way.
For Braille users who don't
fancy the robot reader, or just like to follow along with their
fingertips, there are "refreshable" Braille keyboards
[in photo below right]. The reader uses a scrolling wheel to move down
the page, and each subsequent line is "refreshed" with
a new series of bumps that pop up to form Braille letters.
For those with limited
vision, ZoomText -- like the name suggests -- zooms in on the
text of a Web site or an electronic document and enlarges
it, up to 16 times its normal size. Similar to ZoomText is a
device called TeleSensory, which magnifies the appearance of
an object up to 60 times. This way a person with poor vision
can read a piece of mail or a pill bottle, sign a check or thread
a needle.
As the secretary of the Humboldt
Council for the Blind, Rose keeps apprised of local issues that
are important to the blind community, such as access to public
events, local newspapers and transportation, as well as pedestrian
safety and support groups.
Many people, Rose said, have
trouble admitting to themselves and to others that their vision
is fading.
"I think the best thing
for anyone going through it to remember is that their life is
not over; it's not the end of the world. You just learn how to
do things a new way -- it might be a slower way than before,
but life isn't a race," he said.
Though she is not racing, Peggy
Martinez [in photo
below left] moves pretty fast.
The 44-year-old singer, drummer, business owner and advocate
for people with disabilities is probably the most visible and
busy person in the local blind community.
Martinez's
professional manner is tempered by the rocker-tinged vernacular
she sometimes slips into, inserting "dude," "totally"
or "killer" into conversation if a topic excites her
enough. Voting is one of those topics.
"Lindsay [McWilliams from
the Humboldt County Elections Office] is totally working on making
things accessible, not just for blind folks but for people with
all kinds of disabilities," she said.
When Martinez voted in last
week's special election for the Arcata City Council, she had
to have a poll worker fill out her ballot.
Like Rose, she belongs to a
number of advocacy groups for disabled people, including the
Humboldt Council for the Blind (she's the president), the Northwest
Committee on Employment for People with Disabilities and Pedestrians
for Education, Development and Safety (PEDS).
Her brand of "mellow advocacy,"
versus a more strident, comply-with-the-Americans-with-Disabilities-Act-or-else
attitude, seems to work best in this area, she said. Instead
of demanding change she politely asks for it. For instance, to
get audible traffic signals in Eureka and Arcata, she talked
casually with public officials about the safety issues visually
impaired pedestrians face in Eureka and Arcata.
It didn't take long before the
four new cuckoo-sounding signals were installed. The next project
on her list is to have a particularly dangerous intersection
at Myrtle and West fitted with audio signals and new crosswalk
lines.
Aside from her diligent volunteerism,
Martinez runs her own business, Eureka AT, teaching people assistive
technology, and has been in a number of bands, from heavy metal
to calypso.
And while she
is not shy about highlighting her ambitions, she prefers to think
of herself as a "regular person."
"When I was growing up
we only heard about people like Ray Charles. And Brother Ray
is great, but we never heard about a normal blind guy who worked
at the hardware store, or some regular dude with a wife and kids,"
she said. "It's important to know that a lot of us are successful,
but we're also just regular folks."
[Photo at right:
Martinez uses a BrailleNote,
which is similar to a laptop computer.]
That she seems more focused
on her abilities, rather than her disability, is indicative of
the way many blind people view themselves.
"One of the biggest issues
that a lot of us have is that [sighted] people get this idea
that our lives must suck," she said. "Personally, I
feel pretty dang lucky. I've got great things going on. I'm having
more fun that most people out there.
"My sight impairment doesn't
keep me from doing very much. I work, I walk all over the place
[using a cane], I travel, I take the bus, I go hiking with friends.
I have different methods for doing some of these things, but
so do sighted people."
Still, certain things are tougher
for blind people to do without some help. For Martinez, whose
vision is 20/400 (20/200 constitutes legal blindness), there
are household chores and grocery shopping that she has a paid
assistant help her with, since she lives alone.
Of her clients at Eureka
AT, the youngest person is in his 30s, the oldest is an 84-year-old
woman from McKinleyville who's learning Braille.
What's strange is that most
of Martinez' clients are women, even though statistics reveal
that almost twice as many men are legally blind or deaf in this
area.
"There are a few reasons
for that. One is that boys are taught from a young age not to
ask for help, and that's a drag because we know there are a lot
of [legally blind men] out there who need it," she said.
"Another reason is that men usually have their wives to
rely on" since women generally live longer than men.
A 2003 survey by the State Independent
Living Council of California based on 2000 U.S. Census data showed
that in Humboldt County, 2,677 people between the ages of 16
and 64 reported having a sensory impairment (deafness or blindness):
1,718 men and 959 women.
According to statistics that
the LightHouse compiled from 2000 U.S. Census data, there are
585 legally blind people in the county.
After losing his sight, James
Forbes didn't spend much time feeling sorry for himself.
It's been three years since
the energetic 38-year-old father of two boys, 6 and 10, has gone
completely blind. Since then, he has become fluent in assistive
technology programs, enrolled at College of the Redwoods and
joined a band, The Buffy Swayze, which he describes as Devo-like
karaoke pop.
[Photo below left:
James Forbes on far right, with Buffy Swayze bandmates]
Forbes
explained how an autoimmune condition caused his sight to deteriorate
over the course of a few years, first in one eye, then the other,
starting toward the bottom of his line of sight, then the periphery.
He was put on steroids for two years to slow down the weakening
of his eyesight until he finally he couldn't see anymore. That
was July 2002.
When the realization set in
that he could no longer play catch with his sons and that he
would have to quit his job as a buyer and operations manager
for a crystal-making company, he felt a stab of grief, but said
he shook off any sadness pretty quickly.
"I just don't waste any
time moping around. At first I was kind of depressed but I've
gotten through all that. I don't dwell on the past," Forbes
said.
To say that Forbes is self-assured
or resilient is an understatement. Fearless might be more accurate.
Forbes has jumped headlong into
general education courses at CR. Learning Braille and JAWS along
the way, he has bypassed the baby steps of taking special computer
courses for the disabled, in a sense speeding his way toward
transferring to HSU as a business major.
"At first I thought I just
wanted to get an associate's degree, but now I'm really digging
school," he said, pointing out that he has a 3.5 grade point
average. "But I'm not here to have fun. I'm taking real
classes so I can move on."
School wasn't on Forbes' mind
when he and his wife decided to leave Santa Rosa for Eureka in
August 2002. Since he couldn't work anymore, they knew
they'd need cheaper housing. "I also figured that a smaller
town is safer than a city for someone like me, with crime and
everything," Forbes said.
Less than one month after arriving
in Eureka, Forbes was playing bass for The Buffy Swayze.
"I always fancied myself
a pretty confident musician, but it became a lot tougher when
I couldn't see what I was doing," Forbes said. "Most
musicians don't have to look at their instrument too much, but
even having the luxury of glancing at it once in a while is helpful.
"So I took it slow for
a while, and sort of relearned the guitar."
In addition to playing the music,
Forbes books the shows for The Buffy Swayze, and is about to
finish a Web site for the band.
As for long-term goals, Forbes
wants to get back into the same type of business he was in before,
as an operations manager.
"Right now, I think that
with all the AT I have I could do that same job again. I couldn't
operate a forklift, but any correspondence, ordering, maintaining
operations, all that. I'm totally ready, but I want to finish
my education first. I just want to be the best at whatever I
can do so I can feel comfortable with my performance."
While losing his sight motivated
Forbes to plow ahead toward his goals, 71-year-old Jean Wellington
[photo at left], of McKinleyville, said that being blind has taught
him that patience is a virtue.
These days when the retired
fifth-grade teacher checks his mail, he runs his hand over each
envelope, feeling for the raised surface of a stamp. Letters
from friends have stamps, junk mail usually doesn't.
On a lucky day that he receives
a personal letter, he might have to wait days before his assistant
can come by to read it to him.
Aside from reading printed letters,
it's the unspoken parts of conversation that Wellington longs
for the most.
"I really miss seeing the
expressions of people's faces," Wellington said.
In his mind's eye, there are
certain faces that he can still remember, including prominent
figures like Ronald Reagan and Richard Nixon. It was the mid-1960s
when Wellington noticed that his eyesight was fading. By the
early `80s, still years away from retirement, he was completely
blind. He does not know what the current president looks like.
"I know it's probably better
off that way," he quipped.
Wellington's wife died in 1987,
one year before he retired after 25 years of teaching in McKinleyville
schools. Since then, he has volunteered at KHSU, hosting two
radio shows -- "World of Music," a classical music
program that airs Wednesdays at 11 a.m., and "Good
Stuff," a program of jazz and big band tunes from 1930s
musicians like Tommy Dorsey and Benny Goodman. He keeps his song
lists for each show on a BrailleNote, a laptop computer with
an internal modem and refreshable Braille keyboard.
Wellington accepts his limitations
gracefully, and he still manages to get out of the house regularly,
for his radio show, to attend support groups for people with
vision impairments and to visit the Adult Day Care Center in
Arcata.
"I don't do much there,
but I think people might like my company. They know I won't judge
the way they look. Some people have terrible handicaps, but I
don't see that. I see them for who they are inside," Wellington
said.
He knows what it's like to be
treated differently for having a disability.
"If I go out to dinner
the waiter will usually ask my companion, `What will he be having
for dinner?' So I just say, `He'll have the fish entrée
for his dinner," Wellington recalled. "Then they usually
start talking directly to me."
Jean Wellington, third from left, participates in an Arcata Adult
Day Care support group.
Lauren Favor, a blind Arcata resident and single mother of
a 12-year-old son, has also experienced bizarre treatment from
sighted people, but the spirited 41-year-old Arcata resident
describes the experience more bluntly.
"People will
seriously treat me like I'm retarded," she said. "A
cashier will talk to me really slow and loud, and I have to be
like, `Hey, do I look like I'm 3 years old?"
While incidents like that get
a good-natured rise out of Favor, a recent encounter at a fast
food restaurant made her seriously upset.
Last month when Favor, her guide
dog Riva, and two sighted friends went into Carl's Jr. in Eureka,
Favor was asked to take her dog out of the restaurant.
[Photo at right:
Lauren Favor walks with Riva]
"I really didn't want to
be Rosa Parks and refuse to leave, but I was not about to be
unlawfully kicked out of there," she said.
An exchange ensued between the
cashier and Favor, with Favor explaining that guide dogs are
allowed in restaurants per the ADA, to which the cashier replied,
"Whatever."
Favor, it seems, was born a
fighter.
Delivered four months premature
after her mother fell down the stairs while carrying laundry
in their Massachusetts home, Favor was officially labeled a miscarriage
at birth. Her parents were told to not get too attached, and
she was placed in an incubator.
Years later she found out that
the long period of time she was kept incubated is probably the
reason that she is legally blind. (High levels of oxygen in incubators
can interfere with eye development; today, oxygen levels are
monitored carefully.)
When she started elementary
school, she could see, but not very well. "I was that poor
ugly kid with the huge thick glasses," she said.
Over time, her eyesight worsened.
A number of surgeries have been performed on her eyes for a rare
condition called lattice degeneration, where small holes wear
through the eye's retina. The surgeries slowed her vision loss
for a time, but at this point there is nothing more that can
be done, she said.
Although the remaining eyesight
she has is very blurry, something she describes as looking around
under water, Favor said she feels lucky to still perceive color;
matching her clothes isn't a problem.
A few years back, Favor decided
it was time to learn how to walk with a cane, a labor-intensive
process that takes months of training with an orientation and
mobility specialist. In order to be eligible to have a guide
dog, like Riva, a person must first pass a cane-training course.
"I knew from the start
that I wanted a dog. For one, because I love animals, but also
because I felt like I couldn't get around very fast with a cane.
I'm short and husky, but I actually like to walk pretty fast,
so the cane was frustrating for me," she said.
Having Riva, a 5-year-old yellow
Lab, has been a definite perk for Favor. But one drawback to
living in Arcata, she said, is that other dog owners are lax
about the town's leash law, and Riva has been attacked by loose
dogs.
"Riva won't fight back.
I have to protect her," Favor said.
Once when a dog bit Riva in
the face, Favor "beat the hell out of it" with the
cane she was carrying under her arm.
When she's not protecting her
dog, Favor takes classes at CR's Arcata campus, and works for
the school a few hours a day doing office work.
Like Forbes, Favor is also on
the Dean's list with a 3.7 GPA and plans to transfer to HSU to
pursue a degree in social work.
"If I can do this, anyone
can. If you're a single mother and you're disabled, you can't
stay in your house all the time, you can't stop parenting, you
can't give up," she said. "I know it sounds crazy,
but my vision impairment has actually opened up a lot of doors
in my life."
How to interact
with the blind
1. When addressing a visually impaired
person you know, tell them your first and last name: just saying
"Hi," won't suffice, since they cannot see you.
2. Grabbing a sight-impaired person's arm
to get their attention is invasive. (See step one.)
3. If a person appears to need assistance,
ask them if they would like some help. Don't assume that a disabled
person would take offense to your offer. But don't play the hero
either. Just ask.
4. When leading a sight-impaired friend
somewhere, offer your arm, and stay a half-step in front of her
as you guide her along. Some people tend to push a blind person
in front of them as a way to steer them in the right direction,
which can be scary and disorienting.
5. When a sight-impaired person is preparing
to cross a street she is listening closely to traffic and/or
an auditory traffic signal. If you happen to be on the curb with
her, striking up a conversation can be distracting.
6. Do not pet a guide dog when it is trying
to do its job.
7. Do not assume that blind people are
hearing-impaired or learning impaired. Talk at a reasonable volume
and speed. If a person has trouble hearing you, he will probably
ask you to speak louder.
SOURCES: PEGGY MARTINEZ
AND LAUREN FAVOR
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