VISION ACCESS is a magazine by, for, and about people with low vision. VISION ACCESS is published quarterly in three formats (cassette, large print, and email by subscription) by the Council of Citizens with Low Vision International (CCLVI), a not-for-profit affiliate of the American Council of the Blind. Views expressed in VISION ACCESS are those of the individual contributors and do not necessarily reflect the views of the editor or of CCLVI. All rights revert to individual contributors upon publication.

VISION ACCESS welcomes submissions from people with low vision, from professionals such as ophthalmologists, optometrists, and low vision specialists, and from everyone with something substantive to contribute to the ongoing discussion of low vision and all of its ramifications. Submissions are best made on 3.5" disk in a format compatible with Microsoft Word. Submissions may also be made in clear typescript. All submissions should include a self-addressed stamped envelope. VISION ACCESS cannot assume responsibility for lost manuscripts. Submissions may be mailed to Joyce Kleiber, 6 Hillside Rd., Wayne, PA 19087.

VISION ACCESS is a free publication to all members of the Council of Citizens with Low Vision International. Subscription and membership inquiries can be made to CCLVI’s toll free line, 1-800-733-2258.

Editor: Joyce Kleiber

CCLVI OFFICERS:

Patricia Beattie, President,

Bernice Kandarian, 1^st Vice President,

LeRoy F. Saunders, 2^nd Vice President,

Karen Johnson, Secretary,

Coletta Davis, Treasurer,

Ken Stewart, Past President

CCLVI BOARD MEMBERS:

Charles Glaser

Mike Godino

Angela Hadbavny

Imogene Johnson

Jane Kardas

Barbara Kron

Fred Scheigert

Skip Sharpe

Jerry Weinger

Contents

From the Editor…………………………………………………………..3

Organization News

President’s Message……………………………………………………3

From the CCLVI Office, By Bernice Kandarian………………………5

News from CCLVI Chapters……………………………………………6

Advocacy

Women and Vision Loss………………………………………………..9

Chronic Eye Diseases, Annual Exams: A Study……………………13

From Our Members

Member to Member, What Do We Call Ourselves? By Carlos

Gourgey………………………………………………………………14

Showing Children Life with Disability, By Betty Pannell…………...17

A Blessing for Berry Pickers (And for Everyone Who Gives Thanks)

By Mike Vogl…………………………………………………………18

Concerns about Power Doors, By Ken Stewart……………………19

Arm Chair Traveler, By Jane Kardas………………………………..20

Cruise Away with Carnival, By Carolyn Hathaway…………………22

Publications

Report on Impact of ADA on Employment of People with

Severe Vision Impairment………………………………………….24

Blindskills Offers Cookbook………………………………………….24

Health and Science

   Researchers Explore Two New Ways To Reverse Blindness,

      By Czerne M. Reid…………………………………………………26

Summaries of Other Current Research……………………………29

Families Needed for Study of Macular Degeneration…………….31

About Clinical Trials from the National Institute of Health………..32

Assistive Technology

High Tech Specs, By Chrissy Laws…………………………………40

Citrix and GW Micro Promote Access to Computer Applications and

Information……………………………………………………………43

BrailleNote GPS Aids Travel………………………………………….44

A Cell Phone That Speaks……………………………………………44

Selecting and Dispensing Magnifiers Made Easier………………..45

Request for Contributions……………………………………………45

Resources………………………………………………………………..46

CCLVI Membership Application or Renewal……………………...47

From the Editor

     The Washington, DC area is a wonderful place to live for a veteran low vision advocate like me.  Low vision advocacy could be a full-time job if I didn't already have a job as a professional in the field of government relations.  Your board members and other leaders all do their best to keep up with what's happening in legislation, regulations, and other areas of public policy affecting research, services, technology and public education about low vision.  As you will see in the pages of this issue of Vision Access, our Editor, Joyce Kleiber, has sifted information to glean what might be of special interest to our readers.  As this issue of Vision Access was heading for publication, Congress acted in two areas—Medicare coverage for vision rehabilitation and talking signs. CCLVI has been an advocate for these causes.

Here is a description of these actions.

Congress has, for the first time ever, named vision rehabilitation professionals in the Medicare statute. The Medicare bill just passed by Congress appropriates $2 million to study Medicare coverage for vision rehabilitation services. This study, to be completed by January 1, 2005, is to produce recommendations for funding vision rehabilitation services through Medicare. Now orientation and mobility specialists, rehabilitation teachers, and low vision therapists are recognized as valuable to Medicare beneficiaries. And permanent Medicare coverage for these services now seems to be an attainable goal.

This study will also address two obstacles to Medicare coverage for vision rehabilitation—the lack of state licensure for vision rehabilitation professionals and the small number of vision rehabilitation professionals practicing nationwide.

A Senate Omnibus Appropriations bill, which is still pending, complements this landmark Medicare legislation.
The Omnibus bill conference report establishes a 5-year demonstration project to begin July 1, 2004. This project will lead to the provision of national Medicare coverage for vision rehabilitation services.

The Omnibus bill also requires the federal Center for Medicare and Medicaid Services (CMS) to develop policy recommendations by January 2005. These will allow vision rehabilitation professionals to provide services in patients’ homes and environs. In completing its assignment, CMS is to consult with the National Vision Rehabilitation Cooperative and other interested organizations.

While the 5-year demonstration project is in effect, advocates will seek Congressional approval to establish these services on a permanent basis.

Lorraine Lidoff, coordinator of the National Vision Rehabilitation Cooperative, urges the entire field of vision rehabilitation to strategize and take action now to meet the challenges involved in assuring successful outcomes for these groundbreaking initiatives.

In another arena important to people with low vision, a coalition is forming to seek a $30 million appropriation from Congress to fund a huge demonstration project in the metropolitan Washington DC area. This project requires that “talking signs” be installed to assist vision impaired travelers at all bus stops, on all busses, on subway trains, in subway stations, at the Amtrak train station and at both Washington Dulles and Reagan National airports.

     I live here and I can not read signs because of my low vision, and I’m left wondering where all these public transit vehicles are going every single day.  So installing talking signs sounds like a wonderful idea to me.

     The effectiveness and versatility of talking signs as a way finding and orientation system for people with visual and reading disabilities has been researched and demonstrated through numerous studies, tests and installations for fully twenty years.  Installations in the United States, Japan, Norway and Canada are providing reliable, accessible location information.

     Advocates believe that orientation to public transportation is a civil right and that this demonstration project will serve to establish the first truly accessible city for people with visual and reading disabilities worldwide.

     At this point, the legislative push is coming only from the U.S. Department of Transportation and the Louisiana delegation in Congress.  You can help!

     Please contact your United States Congressional Representative and Senators and urge the inclusion of The Washington Area Model Accessibility Project (WA-MAP) in current appropriations considerations. Ask that it be included in the new Federal Highway capital budget appropriations known as SAFTEA.

     If you'd like to have more information about talking signs, contact Jeff Moyer at 440-442-2997 or jeff@talkingsigns.com

California Council

   Our Fall convention took place in Los Angelesat the Airport Crowne Plaza Hotel October 16 thru 19, 2003.
     We departed from our usual program format. The California Council of the Blind Publications Committee, Rehab Services Committee and California Council of Citizens with Low Vision co-sponsored a two and a half hour Writers Workshop Thursday afternoon. The workshop was conducted by Carol McCarl, editor of Dialogue Magazine and Winifred Downing, editor of The Blind Californian. These two women gave a marvelous presentation which was recorded and can be heard by going to www.ccbnet.org and clicking on the Convention link.
     A brief business meeting was held following the workshop. It was the first time in a long time our CCCLV minutes and treasurers report were given in person; Secretary, currently Joan Black and our new Treasurer, Donna Sanchez. Donna not only has our bank records up-to-date but to the penny. And she has prepared a mailing for dues renewal to the 2003 members, plus she compiled a list of previous members from membership lists going back to 1994 in an effort to increase our membership. First Vice President Beryl Brown gave a status report on the development of the manual for Project Insight California (PIC).
     The Friday morning joint session with the Committee on Access and Transportation (CAT) had a two hour workshop on Accessible Pedestrian Signals (APS) by Linda Myers, an O&M instructor inMarin County in northern Californiaand Eugene Lozano, Jr., chair of the CAT. This was a fan out training from an eight hour workshop put on byWestern Michigan University earlier this year in Seattlethrough a grant from Project Action. Materials from this event are also available on the CCB website. Then, Anthony Donaldson from Kaiser Permanente gave an update on the efforts of this gigantic HMO to comply withADA.
     Saturday morning Bonnie Rennie, chair of the Senior Blind Committee, chaired a session during which one of our members, Dr. Flora Beck and Jill Bellows, cruise agent spoke about "Cruisin' without Bruisin'" and Jane Lombard and Socorro Arroyo-Merchain, ILS, Counselors from the Dayle McIntosh Independent Living Center (ILC) in Orange County, described their program and services for people who are losing their vision. It was especially refreshing to learn about this type of program being provided by an ILC. Dr. Bill Takeshita, Director of Optometric Services at the Center for the Partially Sighted inWest Los Angelesgave a dynamic presentation. Dr. Bill, as he prefers to be called, announced in January of this year that he is now experiencing low vision. This has led Dr. Bill to look at service delivery methods from a more consumer oriented point of view. As a result, he has been doing training to enlighten his colleagues. This session was also recorded and is available on the CCB website.
     Our next convention will be at the Newark/Fremont Hilton Hotel in northernCaliforniaApril 15 thru 18, 2004.

Delaware Valley Council of Citizens with Low VISION, DVCCLV. We welcome members from the Philadelphia area, Southern New Jersey, and Delaware. We share information about low vision and our triumphs and trials related to our low vision at the support sections of our monthly meetings.

This year, Betty Pannell, developed a website for our chapter. Visit this site at http//home.earthlink.net/~DVCCLV.

In September, members of our chapter went to the IMAX Theater at the Franklin Institute Science Museum. After viewing two the movies on the giant screen, we enjoyed pizza and compared how each member’s particular vision limitations affected his or her perception of the movies we had seen. Although descriptive video is available at IMAX Theaters throughout our country, this is not the case at the Franklin Institute. Therefore we drafted and sent a letter to the director of operations at the IMAX here advocating that descriptive video be offered here.

In November members of our chapter attended an audio described performance of the play, “Top Dog Under Dog” at the Plays and Players Theater. What a pleasure to sit in an audience and not feel that we were missing something others who do not have impaired vision can see! Our chapter has been advocating for audio described theater performances.

Metropolitan Council of Low Vision Individuals, MCLVI. We welcome members from Northern New Jersey, New York and New England. Our officers are President Ken Stewart, Vice Pr4esident Isolde Keilhofer, and Treasurer Mildred Spinner. We meet in a Lower Manhattan office building, located directly on top of where a number of major subway lines converge. We have been pleased to offer support and low vision information to several new Chapter members. Much of our time and energy continues to focus on transportation issues. This year we have participated in a series of discussions with local bus officials pursuing ways of gaining better compliance with federal requirements that drivers announce stops. We have given attention to signage in subway stations and Grand Central Terminal and to more effective announcements by commuter rail conductors.

For more information about this chapter call Ken Stewart at 845-986-2955.

National Capitol Citizens with Low Vision, NCCLV members were treated to a hike especially

designed for those with visual impairments at Rock

Creek Park in Washington, DC.  An eager to please park ranger discussed the park's topography (AKA layout) and history.  She pointed out things that we might not have noticed such as mushrooms (and poison ivy which was especially helpful).  She showed us how to identify bird calls and trees.  An added bonus...because of Hurricane Isabel, we were able to see and hear things that would not have ordinarily been possible such as a bird's nest and the peaceful sound of waterfalls.

     For information about this chapter based in Washington DC contact Barbara Milleville, Chapter President at 301-496-5248 or email at NCCLV@yahoo.com.

Note:  To learn more about beginning a CCLVI Chapter in your area, call CCLVI at 800-733-2258.

Editor’s Note:  The following article is presented here with permission from Newswise—an on line news service, www.Newswise.com.

     A call for public health action, increased funding for research, and creative educational programs in both the developing and developed worlds may be an outcome of the first international conference on women and blindness.  Vision experts from around the country and the world gathered to explore why women are nearly twice as likely to lose their vision as men and how to stem the tide of blinding diseases in women. Called "Improving Women's Eye Health: Strategies to Address the Greater Burden of Blindness Among Women" and sponsored by the Women's Eye Health Task Force based at Schepens Eye Research Institute, the conference was held at the Harvard Club on November 7, 2003.

     The conference was attended by public health policy makers, health care providers, scientists, organizations for the blind, the women's health collaborative, and vision experts.  It is the first public forum held by the Women's Eye Health Task Force, founded in 2002 by a group of concerned

scientists at Harvard's Schepens Eye Research Institute in response to a statistic just coming to light -that two-thirds of the world's blind are women.

These Schepens scientists invited and joined forces with vision experts throughout the US to form a national task force to begin a battle against eye

disease in women.

     The extent of the problem of blindness in women had became clear with the publishing of a meta analysis of more than 70 epidemiological studies on blindness conducted over the past 20 years.  These studies showed that women accounted for most of the world's blind. In addition, World Health Organization (WHO) statistics indicate that 150 million people are living with low vision and more than 44 million people are blind. Two-thirds of the people suffering from visual impairment are women. Of the one million blind people in the United States, over 700,000 of them are women. In the United States, 2.3 million women are visually impaired out of a total of 3.4 million Americans with visual impairments.

     Although there are more older women in developed countries and more younger

women in developing countries dealing with vision loss, the overall statistics remain the same. Scientists theorize that longevity, smoking, nutrition, and environmental factors may be causing increased eye disease in women in developed nations, while poverty and lack of access to health services are contributing to the appalling statistic in developing countries.

     "The fact is we don't have all the answers, but what we do know is that living in a developed, industrialized country does not protect a woman from the risk of vision loss," says Ilene K. Gipson, PhD, a senior scientist at Harvard's Schepens Eye Research Institute and the chair of the Women's Eye Health Task Force, who gave welcoming remarks at the conference, along with Wayne Streilein, MD, president of Harvard's Schepens Eye Research Institute and vice chair of ophthalmology at Harvard Medical School, and Joan W. Miller, MD, chief of ophthalmology at Massachusetts Eye and Ear Infirmary and chair of ophthalmology at Harvard Medical School.

     Gipson continued: "We hope this conference will be the first step in grappling with the reality of this problem and laying out some strategies to address it.

There has been greater recognition of the issue and more resources focused on blindness and women in developing countries (although still not enough) than in the West."

     Here are some conference highlights.

     In the keynote speech, "Translating Research into Public Health Action," Hugh R. Taylor, MD, the managing director for the Centre for Eye Research at the University of Melbourne in Australia described the impact of low vision on the individual and society, the barriers to preventive care and various successful public health initiatives he created in Australia. "We are looking to Dr. Taylor's efforts as model strategies to help us in our fight against blindness in women," says Gipson.

      In "Gender and Blindness" Paul Courtright, DrPH -- a lad investigator of the meta-analysis, an epidemiologist at the University of British Columbia and the leader of a gender-oriented outreach program at the Kilimanjaro Centre for Community Ophthalmology in Moshi, Tanzania -- focused on women and blindness in the third world. He described the results of his studies that suggest that attitudes and beliefs held by men in these societies are contributing to blindness in women. Men in some cultures, he has found, believe that medical care for their wives is not as important as it is for themselves as heads of households. He described creative educational programs that target men to convince them that visually healthy wives can be more productive family members.

     "Major Concerns in Women's Health," was the topic of a presentation by Julie E. Buring, DSC, a professor of ambulatory care and prevention at Harvard Medical School and the principal investigator of the Women's Health Study at Brigham and Women's Hospital. She talked about vision health issues in the context of all the major health concerns facing women. For instance, she pointed out that

lung cancer has overtaken breast cancer as the leading cause of cancer death in women, and that heart disease is the leading cause of death in women as well as men. She also described the risk factors for diseases such as diabetes and heart disease, which are the same risk factors for eye disease--poor dietary habits, smoking and other lifestyle issues.

     In "Sex Steroid Hormones and Eye Disease," Debra A. Schaumberg, ScD, OD, MPH, an assistant professor of Medicine in the Division of Preventive Medicine at Brigham and Women's Hospital and Harvard Medical School, described her landmark studies that indicate a strong relationship between the use of hormone replacement therapy and dry eye syndrome, a painful debilitating eye disease affecting millions worldwide, mostly women.

     "Nutritional Factors and Eye Disease" by Richard D. Semba, MD, an associate professor of Ophthalmology, Molecular Microbiology and Immunology, and International Health at Johns Hopkins University School of Medicine and The

Wilmer Ophthalmological Institute in Baltimore explored what nutritional factors are known to have an impact on vision and the nutrition prevention measures women can take to increase their eye health. For example, arotenoids and antioxidant vitamins appear to protect people from getting cataracts and age-related macular degeneration. And maintaining a healthy weight can prevent type 2 diabetes, with its disastrous consequences for the eye.

     "Autoimmunity in Eye Diseases" was the focus of a presentation by Janine A. Smith, MD, deputy clinical director of the National Eye Institute. Smith discussed the higher incidence of autoimmune diseases in women and the ocular, potentially blinding features of these conditions. She also described her research on an autoimmune disease called premature ovarian failure, which affects women under the age of 40.  The ovarian failure leads to decreased estrogen, dry eye and even osteoporosis.

     Following each presentation, a panel of experts discussed the issues raised with the presenter and the audience.

     The Women's Eye Health Task Force is based at Schepens Eye Research Institute, which is an affiliate of Harvard Medical School and the largest independent eye research institute in the nation.

People seem to think they know what "blind" is, and they seem to think they know what "sighted" is. But those of us who are neither seem to fall between the cracks. People don't know what to call us - often they don't even seem to know that we exist - and we're not always sure what to call ourselves.

Which term is best? Low vision? Visually Impaired? Nearsighted? Legally blind? Partially sighted? Visually challenged? The National Association for the Visually Handicapped has its own term: "hard of seeing." The multiplicity of terms suggests how difficult it is to categorize people with visual impairments, but any of these certainly beats being called "glasses" or "four-eyes" or "Mr. Magoo" (though I do admit to a certain fondness for that character).

We discussed this topic on WGPS, our Working Group for the Partially Sighted email discussion group. The term "legally blind" got a lot of attention. Some do not like it at all. They find the term vague and confusing:

I have hated the term "legally blind" since I had a colleague who was "legally blind" but drove her car. Are people who can't see at all "illegally blind"?

I have never liked the term "legally blind" either. I prefer the term "vision impaired."

For me when I used to use the term "legally blind" people thought I had a lot less vision than I have. Now that I use the term "vision impaired" they seam to have a better understanding of my vision.

Actually for me legal blindness depends on which eye chart is used to measure my vision. If the standard eye chart is used, my vision tests at 20/200 which is legally blind, but when a more accurate low vision eye chart is used my vision tests at 20/160 which is not legally blind. That is another reason why I use the term "vision impaired" instead of "legally bind" to describe my vision.

However, others actually find the term liberating. From one member:

My experience has been different. The term "legally blind" gives me some official recognition. "Vision impaired" is like "nearsighted" - it can apply to anyone. But "legally blind" is a term that actually means something (even if the precise technical meaning is not always understood).

When I was a student going for my music therapy degree, being able to call myself “legally blind” gave me recognition, respect, and even

dignity. My professors understood they had to make reasonable accommodations and they did so willingly. How things have changed since my earlier student days, when I was merely nearsighted," which to most people was a synonym for "inept." Back then the burden was always on me to make explanations and excuses for the difficulties I had doing certain things. It was painful and humiliating.

How refreshing it is now to be able to say there is a recognized disabled group to which I belong. The burden then shifts to the institution to make sure that the disability is accommodated.

I do not want to go back to the old days. I say let's keep the term "legally blind." The illegally blind will have to fend for themselves.

And from another:

Thanks for saying it so well. When my vision was 20/60 in my best eye, I could see but it was never that good. I couldn't use any such term as “legally blind” though so everyone thought I could see normally and then questioned me when I couldn't see something they could.

I am also finding the term “legally blind” one that is helping me accept the place I am now in. I even say “blind” sometimes to people who are really clueless. It helps them accept who I am and helps me deal with the same thing.

Just another opinion. All of us have them!

There are also practical benefits, if one can qualify as "legally blind":

Here in GA legally blind is 20/200 and opens the door to all kind of benefits, like services at the association for the blind, a tax deduction and special consideration by the Social Security Disability folks. Much of this is probably true elsewhere too.

It seems ironic that a term that can so profoundly affect our self-image is dependent on the judgment of a doctor that may be very subjective. As another member states:

When I first had a badge unceremoniously put on my shirt that said "I have Low Vision," I was offended by a probably well-intentioned oculist. I began to try to find the legal definition of “legally blind” in Texas law. To make a bad pun, it's a gray area in the law in this state. A "professional" has to declare that you have low vision "in their opinion." 20/400 doesn't guarantee any diagnosis. I checked again this week with my ophthalmologist during an appointment. What I gathered was that you have to get a professional with enough qualifications to pronounce you “legally blind” (in the eyes! of the law.) When I found out that here, at least, when you are carrying a "blind" cane and are walking on public and business property, you have the right of way; I decided to try never to be without a cane. It was amazing how quickly I got used to it. I prefer "legally blind," because of the legal mantle. I DO expect small but special considerations.

So that is another point in favor of "legally blind": it places one under the protection of the Americans with Disabilities Act, requiring one's employer to make reasonable accommodations in the workplace according to one's disability. Another advantage of the term may be its usefulness in explaining one's condition to others. Even if people don't understand what "legally blind" actually means (and very few people do), the term sounds official and may be all they really need to know.

I can honestly say terminology seems to be a big issue. I prefer "legally blind” or “low vision”. Personally I think we can go too far. I remember when "visually challenged" was the politically correct way to say it. I guess I think of myself more “legally blind” than “low vision” because when I try to explain my vision to sighted people this one makes the most sense to them.

True. I can't really imagine telling people I'm

visually challenged" when they ask me why I

can't see so well.

The bottom line is, these labels do affect how others see us and how we see ourselves, but we can't let any of them become a definition of who we are. There is no substitute for the knowledge of one's identity that comes from inside oneself, and that endures no matter how we are categorized or stereotyped by others.

Being a member of a group of people with similar experiences can help support that knowledge of one's identity.

(If you would like to become a member of WGPS, please send me your request at laflauta@hotmail.com.)

Children form their opinions and comfort level about disability from adults with whom they interact. Like many values in life this one is “caught, not taught” as one of my college education professors once said in class.

While riding on the train recently, I overheard a mother explain to her daughter how a seeing eye dog knows the way and takes the person where he or she wants to go. I could not let this go, so I filled in kindly with some correct information.

I work as an early childhood teacher and nanny and I have low vision. Here are some things I find helpful when explaining my low vision to children.

1. Whenever possible take time to interact with the interested child. You may be the first person with low vision the child has met. Make the experience a positive one.

2. Be honest about your low vision. Offer answers to honest questions. Encourage questions. If teasing is the reason for the question, don’t honor the request for information. I often will say, “If you really want to know, I’m happy to tell you. But if you’re going to tease me, I won’t answer the question.”

3. Take the mystery out of your low vision devices by letting the child try using them when possible. My nephews and niece all know what my cane is for and its proper use. I will not let them misuse it. As a result, the children leave it by the door. When we go outside, one of the children is bound to hand it to me saying, “Here, Aunt Betty. You need this.”

Do you have tips on this topic? Send your ideas to VISION ACCESS so that we can continue this discussion.

May you enjoy the labor as much as the fruits of your labor—the pickin’ as much as the eatin’.

May you neither miss a chance nor feel guilty to route a berry to your mouth instead of the bucket.

May you never lose a sense of wonder at life’s little surprises—the sparkle of the dewdrop, the glow of the sunbeam.

May you remember that the search is as important as the discovery.

May you live with disappointments, without resentment, when pickin’s are slim, but live gratefully and joyfully knowing that God loves you.

May you never lose hope as you search, and may your faith be deepened.

May you relish the gift of aloneness and never feel the sting of loneliness.

May your pursuit of the humble berry increase your appreciation of the bounty and beauty of nature.

May you savor the simplicity of your endeavor and practice it in all of your life.

May good companions join you in your quest, and may they realize there is a time to speak and a time to be silent.

May you know the ultimate joy that is the gift of sharing your harvest and your self.

May you learn the lesson of the thorn: the flavor of the berries sweetens in proportion to the amount of your scratches and your aches.

May you hear the voice of the Creator in the song of the thrush and in the thunder of the partridge.

May you one day arrive in berry pickers’ heaven where deerflies don’t buzz and chiggers don’t bite, where breezes are cool and the fruit grows at shoulder height.

May your pail overflow with luscious fruit and may your heart overflow with gratitude and love.

And may the Great Spirit fill you heart with sunshine today, and forevermore!