March 17, 2005

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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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