VISION ACCESS, Volume 13, Number 2, Summer, 2006, Copyright 2006 by the Council of Citizens with Low Vision International. VISION ACCESS is a magazine by, for, and about people with low vision. VISION ACCESS is published quarterly in three formats (large print cassette, , and email ) 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, Editor, 6 Hillside Rd., Wayne, PA 19087, jmkleiber@hotmail.com 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. Council of Citizens with Low Vision International 1155 15th Street NW Suite 1004 Washington, DC 20005 1 800 733 2258 Contents From the Editor................................................3 Organization News President's Message: Looking Ahead - 21st Century Issues for People with Low Vision, By Patricia M. Beattie.................................4 News from Our Chapters...............................9 Quality of Life Yoga and Low Vision, By Wanda Silhar........12 When You Need a Driver, By Joyce Kleiber..16 Advocacy ITEM Coalition Strongly Opposes Medicare Proposal to Deny Coverage for Vision Aid Technology...............................................19 Advocate's Alley: When Good People Undo Bad Things, By Ken Stewart.....................24 What Color Is Your Cassette?, By Jane Kardas..........................................26 Science and Health Monitoring Clinical Trials.............................29 Ask the Doctor, By Ikan C. Kleerly...............30 Book Reviews Stung by a Bumble Bee.. Or Was It a Bird? A Review of Fly Like a Bumble Bee, By Ken Stewart........................................33 Some Thoughts about the Da Vinci Code, By Martin Kleiber......................................36 Assistive Technology A Different Vision, By Adele Holoch.............39 Freedom Scientific Announces PAC Mate 4..44 Independent Living Aids Introduces the Magnifico Plus PDA/GPS Magnifiers.........46 Request for Contributions..............................47 Resources......................................................47 CCLVI Membership Application and Renewal..49 CCLVI Officers and Directors, 2005-2006.......50 From the Editor It's time to start packing my suitcase for my trip to the CCLVI convention in Jacksonville. It will be good to meet with people in person, rather than by phone or email. And it will be especially good to meet people who are just getting acquainted with CCLVI. I enjoy exploring a new city and I usually come away with a greater appreciation of my own home base and city, Philadelphia. I would love it if all of you readers could come to Jacksonville. I would like to meet with you and hear your ideas, suggestions and reactions to Vision Access. If you are unable to come, you can certainly reach me by phone, email, or regular mail. It will be great to hear from you and learn how we can serve you better. In the next Vision Access we will surely report on our convention. We want all of you to feel included. Meanwhile my phone number is 610-688-8398, email: jmkleiber@hotmail.com, mail to Joyce Kleiber, 6 Hillside Road, Wayne, PA 19087. Thanks to everyone who contributed to this issue of Vision Access. You made this issue possible. JMK, 6/15/2006. Organization News President's Message Looking Ahead - 21st Century Issues For People with Low Vision By Patricia M. Beattie I'm soon ending my term as president of the Council of Citizens with Low Vision International (CCLVI). There will be more people experiencing low vision as millions of baby boomers become senior citizens and premature infants survive to adulthood. They join us in living between the two worlds of being fully sighted or being totally blind. Here are some personal observations. Since I began losing vision more than a half century ago, the major change has been the advent of new technology to enhance the use of residual vision. On the horizon, however, are forces that would limit access to these technologies. Many of us, even if we learn about these technologies, can't afford the hundreds or thousands of dollars to pay for these aids. The other major trend is the chaos in the field of "rehabilitation for the blind." Some rehab centers insist that people wear blindfolds as they learn the techniques of coping with vision loss. Even at tax-supported state rehabilitation programs, we are beginning to see the catch words of "non-visual" techniques with requirements that people struggle to learn Braille, be required to use a very long white cane, and delay exposure to low vision aids until they have learned "the"skills of blindness" while wearing a blindfold all day. Then, and only then, may they be referred to a low vision clinic to learn about assistive technologies to enhance use of residual vision. And, should an individual find that hand-held or electronic magnification is truly helpful, federal and state programs are closing off what little funding has been available to buy closed-circuit read-write television systems or anything else with a lens. A current example of the dilemma involves the federal Center for Medicare and Medicaid Services. On one hand, this agency agreed to a five-year demonstration project in five geographic areas. The project is to show the effectiveness and cost-benefit of vision rehabilitation services.,On the other hand, this agency proposes to permanently deny any Medicare funding for any assistive technologies which involve the use of lenses. In addition, in this demonstration project, an individual will be eligible for only nine hours of vision rehabilitation services - rehabilitation teaching, orientation and mobility training, or low vision therapy. Meanwhile, the number of vision rehabilitation professionals is declining, with positions for certified personnel open in almost every community in the country. Similarly, there are fewer teachers trained in education of children with visual impairments. The blind consumer organizations advocate the teaching braille. But what about people with low vision who could use help enhancing the use of that vision. Do we know what technologies are readily available for students with vision loss? Do we know what the policies are in our State's federally-funded program for older individuals with vision loss? How much assistance do these individuals really get? An eye exam and prescription for devices for which the State doesn't pay? Nor does Medicaid, Medicare nor most private health insurance? Each of us , as a citizen with low vision, has a responsibility to do some inquiring in our own communities. Here are some suggested questions to ask: Of your local schools' special education director: What are the policies for identifying, evaluating teaching and accommodating students with vision loss? Does the special education department have a parent organization? Could students and parents use some adult mentors? Of your local private agency for the blind (if there is one): What services are available for people experiencing vision loss? Would they welcome a peer counselor or support group organizer/facilitator? Is there potential for organizing a local chapter of CCLVI? When will there be a vacancy on their board of directors? Of your State's older blind program officials: How many people are being served? What services are offered? Do they pay for low vision devices, CCTV's and/or adapted computers? Of your state affiliate of the American Council of the Blind: Can you help develop a program session on low vision - including a plan for reaching out to potential new members not yet familiar with organizations which advocate for people with vision loss? Remind them that 80 percent of people who are legally blind have some useful residual vision and have some issues which may differ from those of people who are totally blind. I encourage you to get involved personally in making a difference for all of us - and those who soon will be joining our ranks as citizens with low vision. Patricia Beattie, Consultant, Public Policy National Industries for the Blind Voice: (703)310-0513 cell: (703)623-9840 email: pbeattie@nib.org News from Our Chapters CCCLV The California Council of Citizens with Low Vision met in convention on April sixth to ninth at the Hilton Arden West Hotel in Sacramento, California. President Bernice Kandarian chaired the business meeting on Thursday. Mike May gave a presentation on the subject of Global Positioning Systems and cell phones. Mr. May was totally blind and has regained some of his vision. Anna Marie Jones of the Card Program in Oakland California talked to us about disaster preparedness and what things we can do for ourselves in an emergency. The program was both humorous and informative. Mitch Pomerantz, the first vice president of ACB, told us what ACB is doing regarding preparing for a disaster. A panel composed of California Council of the Blind members discussed the problem of health care for patients who are blind or visually impaired. Chris Gray, ACB president, told us what ACB is doing regarding the senior blind population. He also spoke of Diabetics in Action, the newest affiliate of ACB. We enjoyed many other programs which are too numerous to mention. For information about this chapter, call 800-733-2258. MCLVI Congratulations to Chapter member Roxane Offner who has just been named to the Columbia University School of Social Work Hall of Fame! After being named to Phi Beta Kappa as an undergraduate and receiving her M.S.W., Roxane did pioneering professional work in the new field of community organization. It's great that she is now receiving recognition. We are very proud of her, and all of the other high-achieving members of our chapter. For information about this chapter call845-986-2955. NCCLV In March, we joined a neighboring support group, the Low Vision Support Group in Montgomery County, MD for a session of Ask the Doctor. Dr. David Parver, ophthalmologist at the Retina Consultants in Bethesda, MD answered our eye-related questions. Some of the topics discussed were stem cells, nanocells as well as diet and eyes. The good news is that there are new treatments for those with macular degeneration and some other degenerative eye disorders. Also, we discovered that there are eye-related benefits that most everyone can get if we acquire healthy eating habits and exercise regularly. We all appreciated Dr. Parver's candid and detailed responses. The next month, Scott Holden, of Vision Support Services, talked about the Freedom Vision and Telesensory assistive technology product lines which he represents. He brought several new items including portable video magnifiers such as QuickLook and Pico, and an adjustable flat panel tabletop video magnifier. We discussed the pros and cons of buying a portable video magnifier versus a desktop model. NCCLV partnered with the Northern Virginia Chapter of the ACB and exhibited at the Sight and Sound Tech Quest in Fairfax, VA on May 19th. The assistive technology and resource fair was a very successful event as more than 200 people participated. A few signed up to be members of NCCLV. We provided much needed practical solutions to many individuals as they experience vision loss. We also informed them of several important issues that impact them directly and how they can advocate for themselves. In late May, Phyllis Burson led a discussion on "Creating Your Own Happiness". Phyllis is a clinical psychologist, professor and lifetime member of CCLVI. Phyllis shared that there are ways to increase our level of happiness. One of the ways is to seek out work experience. Paid or volunteer, this can increase self-worth. Also, when experiencing unhappy or challenging situations, it is helpful to try to gain control of the situation. Everyone benefited by hearing others share happy and not-so-happy experiences as well as good books to read on the subject. For information about this chapter call 703-645-8716 or email: ncclv@yahoo.com Quality of Life Yoga and Low Vision By Wanda Silhar As human beings, we have been given eyelids, as well as eyes. Obviously, we were meant to use our eyelids to close out the visibility of outside stimuli. If you have good eyesight, you can make the experiment to close your eyelids, and know that it feels restful. If your eyesight leaves something to be desired, voluntarily closing your eyes, when not planning to sleep, can cause many other feelings to rise up - perhaps frustration, perhaps angst, or a feeling which could be described as the opposite of peace. Do that little experiment and examine the feelings that well up in you. What feelings arise as you keep your eyelids closed and are therefore obliged to look inward? In the style of Hatha Yoga that I teach, students are asked to look inward throughout the class, and especially at the beginning and at the end of class. The ancient yogis focused inward in meditation for many hours each day. Even today, there are certain people who dedicate themselves to quieting their mind, to getting to know themselves on the inside, who spend many hours in meditation, even entire years in retreat. "Why?", you may well ask. "How can they benefit humanity doing that?" Well, if you're going to extend yourself out there in the wide world to be 'helpful' to others, you yourself need to possess that elusive quality known as equanimity, a mind that is calm whatever is going on in your surroundings, even when its earthquakes, tornadoes, or floods. But maybe you consider yourself to be just an 'ordinary' person, not someone who extends him or herself to that extent. Maybe you're happy if you can just extend yourself to your family and friends, and remain calm during the ups and downs that occur in your immediate vicinity. How can closing your eyelids help you? It's what you do, when your eyes are closed. The first thing you notice is your mind, wanting, fidgeting, feeling impatient, etc. etc. Trying to still your mind so that you can find comfort and stillness looks easy when you see someone else do it. When you try it, you find it is not easy. Even 5 minutes feels like forever! Plotinus was a Grecian wise man, who died in 270 A.D. (We don't know the year of his birth.) He said, "Close your eyes and awaken to another way of seeing." He was one of many Greek scholars who practiced meditation. He studied Empedocles, who was born in Sicily in the beginning of the 5th century, B.C. 700 years earlier. Empedocles said, "You must plunge beneath your crowded thoughts and calmly contemplate the higher realities with pure, focused attention. If you do this, a state of inspired serenity will remain with you throughout your life, shaping your character and benefiting you in many ways. But if you direct your attention (and your sight) instead to the trivial things most people obsess about, the silly nonsense that dulls our minds, you'll just acquire more objects which you'll only lose anyway." So this makes one think, "How far have we really come in the last 2000 years?" Not so far! Empedocles told us further that what we're looking for "isn't something we can see with our eyes, or hold in our hands." Maybe we should stop looking 'out there' ! Last summer, after I had two eye surgeries, I had the opportunity to put the above advice to the test. I could still see, but not clearly, and certainly not details. I began to realize that the visual stimuli that constantly bombard me and everyone else are not necessary to see; even seeing to do the Hatha Yoga poses that I was teaching is not all that necessary. When doing yoga, you do not move off your mat. You are not going anywhere. It is necessary to cultivate what is known as Proprioceptive Awareness, that is awareness of your body in space. When your vision is challenged, it is easier to cultivate this sixth sense. As human beings, we all have proprioceptors on the surface of our skin, that let us know where the various parts of our body are. They coordinate with our sense of balance, and our sense of vibration that lets us know that something or someone is in our space. With proprioceptive awareness it is possible to do Hatha Yoga, the physical practice, as a 'meditation in motion,' that is, very slowly, paying attention to all parts of the body, on a moment to moment basis. In fact, doing yoga this way, with the eyes closed, or with limited vision, helps us to get in touch with who we are, on the inside, even more effectively. Of course, some vision is helpful, especially when you are new to yoga, and find that seeing poses demonstrated helps you to understand what to do better than a lot of explanation. But especially in the West, as a culture, we depend far too much on our sight, to the exclusion of our other senses. We would surely be more balanced as individuals if we would cultivate our other senses equally. If we did, we would find our attitude about vision, and specifically our vision, changing. This could only be helpful. More balanced, calmer, more inwardly focused, we would see our wisdom increase. This can be your quest, and your challenge! When You Need a Driver By Joyce Kleiber What would you do if you were offered a great new job and there was no public transportation available to get from your home to this job? In the January-February 2006 issue of Dialogue Magazine Carmella Broome of Columbia, South Carolina shares her experiences in finding and hiring a driver so that she could get to and from her new job. Carmella offers many useful suggestions. Here are some of them. 1. How and where to advertise for a driver --Put a notice in your apartment building. --Place a notice in your Church's Sunday bulletin. --Call local agencies that serve senior citizens. --Contact local chapters of blindness organizations. --Contact the local chapter of the Lions Club. --Contact the local vocational rehabilitation office. --Put an ad in the "Help Wanted" section of the local newspaper. 2. How to screen applicants --Note applicants who are friendly and articulate. --Ask: What qualities would you look for if you were going to hire a driver for yourself? What qualities would make you decide you might not want to hire that person? --Ask for two references, preferably from previous employers and not from relatives. --Ask: Have you had previous experience in driving for someone else? --Rank applicants according to their suitability and begin to check the references of those who seem most desirable. --Ask references how long they have known the applicant and whether or not they would hire him or her as a personal driver. Ask about dependability, punctuality, driving safety and general personality. (Use open ended questions, not those that require a "Yes" or "No" answer.) 3. After selecting and hiring a driver --Give driver your home, work and cell phone number. --Give driver directions to your destination. --Get a copy of his or her driver's license and insurance card. 4. Deciding on fair compensation --Consider cost of gas, driver's time and mileage being put on car. 5. --Most people pay $8 to $10 per hour plus the cost of gas per mile. The amount includes the time it takes a driver to get from his or her home to the person who needs transportation and then back to the driver's home again. (The amount comes out to about half the cost of taking a cab.) 6. When your driver is not available --Keep a list of about four alternate drivers. Dialogue is published by Blindskills, Inc., P.O. Box 5181, Salem, OR 97304-0181; Phone: 800-860-4224; E-mail: info@blindskills.com; Web site: www.blindskills.com. For a free sample copy of Dialogue or information about other publications offered by Blindskills, Inc. contact the office directly. Advocacy ITEM Coalition Strongly Opposes Medicare Proposal to Deny Coverage for Vision Aid Technology WASHINGTON, D.C. - The Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition expressed strong disagreement with a proposed rule from the Centers for Medicare and Medicaid Services (CMS), under the Department of Health and Human Services (HHS), that would severely restrict access to and development of assistive technology for people with vision impairments. On Monday, May 1, 2006, CMS issued a proposed rule that outlines a competitive bidding program for Durable Medical Equipment, Prosthetics, Orthotics and Supplies (DMEPOS). Within the regulation, CMS has chosen to include a section entitled "low vision aid exclusion." The "low vision aid exclusion" segment of the regulation proposes that all devices, "irrespective of their size, form, or technological features that use one or more lens to aid vision or provide magnification of images for impaired vision" be excluded from Medicare coverage based on the statutory "eyeglass" exclusion. According to Mark Richert, the Director of Public Policy for the American Foundation for the Blind, "CMS would be essentially stating that Medicare will not cover any device, regardless of cost, that could assist individuals with low vision from hand- held magnifiers to video monitors." Mr. Richert went on to state that "because Medicare plays such a large role in the assistive device market, this proposal could not only restrict access for those who currently have impaired vision, but threaten the development of any new technologies that could aid those who will experience such impairments in the future. We encourage CMS to take greater account of the impact this overly broad exclusion will have on an entire population of Medicare beneficiaries." The Medicare statue excludes coverage for "eyeglasses" except for one pair of "conventional eyeglasses or contact lenses furnished subsequent to each cataract surgery with insertion of an intraocular lens." However, there has always been a level of ambiguity with regard to the Congressional intent of this language. The rule released on Monday is proposing to revise the Medicare regulations to state that the term "eyeglasses" is to be interpreted as any lens used for aiding sight and, thus, excluded from coverage. "This proposal is just another example of the Medicare statute being interpreted in the most restrictive way possible when it comes to assistive technology and device coverage," stated Eva DuGoff of the Medicare Rights Center and ITEM Coalition Steering Committee Member. "The agency continues to ignore any fluidity in the Medicare law and the result is a lack of access to important technology for people with disabilities." This proposal on low vision aids is likely motivated by a number of appeals over the past several years that challenge Medicare denials of video monitors and other such aids based on the eyeglass exclusion. In one case, Currier v. Thompson, No. 04-94- B-W (D. Maine May 11, 2005), the U.S. District Court for the District of Maine found that a video monitor is not excluded from Medicare coverage based on the eyeglass exclusion and remanded the case back to the HHS Secretary to determine if a video monitor is considered under the Medicare benefit "durable medical equipment" or a "prosthetic device." However, this recently proposed regulation would invalidate this ruling. "Over the last several years we have witnessed the tightening of Medicare's mobility device benefit as illustrated by the program's increased commitment to the 'in the home' restriction and aversion to coverage of new mobility technology such as the iBOT Mobility System," stated Peter W. Thomas, ITEM Coalition Steering Committee Member. "Now, it is clear that this is not a pattern unique to the mobility device benefit, but an approach that threatens the health and independence of all people with disabilities who depend on any assistive technology." As Alaine Perry of the United Spinal Association states, "the impact of these restrictive coverage decisions is far-reaching. Basically, Medicare is sending a message to all device manufactures, innovators and other stakeholders that investments in assistive technology for people with disabilities will not pay off." The proposed rule can be accessed in the 'Downloads' section at www.cms.hhs.gov/CompetitiveAcqforDMEPOS/ and comments on the rule are due by June 30, 2006. The ITEM Coalition was formed in 2003, and its 74 member organizations include a diverse set of disability groups, aging organizations, consumer groups, labor organizations, voluntary health associations, and non-profit provider associations. The ITEM Coalition's purpose is to raise awareness and build support for policies that improve coverage of assistive devices, technologies and related services for people with disabilities of all ages. For more information on the ITEM Coalition, please visit www.itemcoalition.org. Advocate's Alley: When Good People Undo Bad Things By Ken Stewart In May I spent an intense day and a half in the presence of a most impressive concentration of able and energetic people dedicated to making the built environment friendlier to pedestrians with disabilities. It was a session of a sub-committee advising the U.S. Access Board on public rights-of-way. The specific objective, still not quite realized at this writing, is to furnish local transportation agencies guidance on renovating and reconstructing intersections, sidewalks and streets. The assignment is daunting because there are so many real-world obstacles such as hilly terrain, storm drainage, and very narrow strips between building and road. Then, too, the local officials being guided, are not always motivated to find the most beneficial solution. They might rather choose a cheap or easy solution. The sub-committee, about twenty of us, includes architects, engineers, local transportation officials, and advocates, working in marvelous harmony. The subject matter is predominantly the reduction of obstacles to the movement of wheelchairs, so any expertise is not tapped until there are pedestrian signal sites to be determined, or, the required detectable curb ramp strips to be assured. In that endeavor I am only supplementing the efforts of our most competent and effective sub-committee leader, Janet Barlow. Janet is a nationally known and universally respected expert on the orientation and mobility of people who are blind or vision impaired. I came away from that Washington meeting with mixed feelings. It is heartening to witness such dedication and diligence, but sobering to hear so many tales of resistance and non-compliance out there across the land. The following week my spirits were lifted when I spoke to the Warwick Town Board. My specific topic was emergency preparedness for citizens with special needs, but the most encouraging point of the evening came after the session was over. One of the Board members told me that my remarks had reminded him to instruct a contractor to install features in a public parking area responsive to the needs of people with disabilities. He headed for the work site directly from the Town Board meeting! That was a reminder for all of us, of the value of maintaining a high profile always, whatever we are doing out there in the public view. What Color Is Your Cassette? By Jane Kardas Those of us in the low vision community are an odd lot! What and how one of us sees may not necessarily apply to the other. I thought perhaps sharing my experience with Newsweek Magazine could inspire some of you to take action on your own behalf. As a person with low vision who is fortunate enough to see color, but not able to read print, no matter how large the size, being able to identify independently the multitude of cassettes that arrive at my home weekly, is extremely important. The following letter that I wrote to Newsweek Magazine and their response might send some of you on a mission of your own. Newsweek Magazine P.O. Box 2120 Radio City Station New York, NY 10101- 2120 Dear Editor, As a visually impaired subscriber to Newsweek Magazine, I would like to compliment you on making your magazine available on cassette tape to those of us who are unable to read printed matter or identify the titles in Braille. I must say that when I opened your envelope and saw the bright yellow cassette, I knew immediately that my Newsweek Magazine had arrived! However, the latest cassette arrived and I was unable to identify it, much to my dismay. It is now black and white like several other cassettes I receive, such as Health & Nutrition Newsletters, National Geographic and New York Times Book Review, just to name a few. Imagine my disappointment when I realized that you had changed from your bright yellow cassette to black and white and I no longer would be capable of independently identifying your magazine. (The Reader's Digest cassette is royal blue which makes it readily identifiable). In closing, I must say that my particular situation is not an isolated one. Many people with visual impairments are able to recognize color. It is my hope that you might return to your bright yellow cassette. Thanking you for your consideration in this matter. Sincerely, Jane Kardas The following is a letter that arrived in my mailbox from Newsweek a short time later, which will show that we are always our own best advocate. American Printing House for the Blind Attn: Nancy Glur 1839 Frankfort Ave. Louisville, KY 40206 Dear Nancy, We received the enclosed letter from a visually impaired Newsweek subscriber who receives her Newsweek on cassette tape through your organization. She has a valid request that Printing House for the Blind return to using unique colored cassettes as a publication recognition aid for those who have enough sight to recognize color. Please pass her letter on to those who make the decisions and could reinstate this practice. She is a member of the California Council of the Blind as an avid user of your program. Thanks for your assistance. Sincerely, Jule M. Girman Fulfillment Manager For Newsweek, Inc. If like me, the color of your cassette is of importance to you, please join me on my mission. Just think of the possibilities and, of course, the basic benefit is for our own independence! Science and Health Monitoring Clinical Trials Looking for a fast and free way to monitor major clinical trials? Look no further than www.clinicaltrials.gov. This fully searchable web data base is maintained by the United States government, US. National Institutes of Health. It has information about both government and privately supported clinical research, and good search capacity - organized by sponsor, by condition, or by status. In other developments, a major initiative is currently underway to establish an international clinical trials registry under the leadership of the World Health Organization. Promoters of the so-called International Clinical Trials Registry Platform (ICTRP) stated, "The WHO Registry platform considers the registration of all interventional clinical trials a scientific, ethical, and moral responsibility. This responsibility extends to all trials, including early and late phase trials, trials of marketed and non-marketed interventions, randomized and non-randomized trials, etc. The primary objective of the Registry Platform is to ensure that the existence of all trials is publicly declared and identifiable, thus facilitating disclosure of results from all trials, and fulfilling ethical obligations to study participants". Some early consultations with stakeholders have been held with a formal consultation to be held in Geneva April 26, and a beta version of the Search Portal anticipated by May 2006. More information is available at http://www.who.int/ictrp/consultation/en/index.html Other International Council of Medical Journal Editors (ICMJE) reviewed and accepted registries (as of January 2006) are www.actr.org.au, a new Australian government supported data base launched this year, www.isrctn.org, www.umin.ac.jp/ctr/index/htm, and www.trialregister.nl for the Netherlands. Ask the Doctor By Dr. Ikan C. Kleerly "How does a blind person know what pills he is taking when all the bottles are the same?" The true answer is, "He doesn't!" It requires some organization, cooperation and memorization. When folks get a prescription from the pharmacy, the pharmacist generally tells the person what it is, how and when to take it and why it is being taken. OK, that is fine if there is only one medication. What happens when there are two or even more medications? Did you know that research indicates that an estimated 100,000 people are killed by errors and/or adverse drug reactions each year. This is cited as the fourth leading cause of death in the United States. These shocking statistics have prompted a pharmacist in the VA hospital in Washington to do something about it. What would you think of a pill bottle that actually TALKS to you in a human voice and gives you all the information written on the label? Wouldn't that be great? It is possible, in fact it is available. REX, the Talking Pill Bottle will be one of the exhibitors at the Convention on May 26th. The bottle has a groove on one side. At the base of that groove is a button which is pressed and held for the voice to be heard regarding that specific bottle. The bottles are disposable, and should be replaced with a new one with the refill. FDA recommends this to prevent cross contamination of residue in the empty bottle. The equipment needed for this process is very affordable. The pharmacist merely needs to have the recorder which hold the bottle to be recorded in the base and speak into it what he prints on the label. If the patient is Spanish speaking or Swahili speaking, the information can be recorded by someone knowledgeable in that language. The Rex starter kit sells for $55.00 and consists of the recorder base, a mike, a charger and three bottles. A refill kit of three bottles is $18.00 or $132.00 for twenty four bottles. As of this writing, these are only available in a few pharmacies in the Washington D.C area. However, if any of our readers are interested, you may contact Dr. Edwin Druding at 623.937.1211 or by e-mail at drdruding@cox.net . There is a small charge for shipping from the factory. Note: Dr Ikan C. Kleerly will be moderating a panel at the American Council of the Blind in Jacksonville July 9-16 with the Council of Citizens with Low Vision. The topic of the panel is "It Ain't Easy Being Green." Book Reviews Stung by a Bumble Bee.. or Was It a Bird? A Review of Fly Like a Bumble Bee By Ken Stewart It was the subtitle of this book which caught my attention: "A Blind Magician Shares His Most Powerful Secrets." This mercifully short, 88-page, work did not live up to that promise. But I can recommend it anyway, at least for any consumer playing the NLS cassettes [#RC59368] on a player with a Fast Forward button to be activated when author R.W. Klamm is mired in the mundane. The title is a reference to the bumble bee's apparent defiance of the laws of physics when it manages to fly... as the man with bum eyesight defied his expected limits. The metaphor wore thin for me when the story teller who is legally blind shifted from a person struggling with the everyday frustrations of low vision, to someone who flies through some situations with no limits at all noted. He arrives for a job interview and describes the receptionist and the details of her office decor. He frequents the neighborhood swimming pool with no hint of any visual intimidation. When Klamm is buzzing like a bee though, I am with him all the way. So many of those recounted incidents will ring so true for every reader who has low vision. His description of his particular vision impairment drew an audible, "Yes, yes", from me. Like mistaking a stranger for the person he arrived at the laundromat with, or being unable to count the backyard fence posts even though he could see them plainly. How well I remember the letterhead with an address at its top I needed to understand to send my reply. I could not tell if it was "111 South Michigan Boulevard," or "1111 South Michigan Boulevard." Then I turned the letterhead sideways, and, lo and behold, I could count the ones accurately! Yes, this is a work by turns poignant and pedestrian, humorous and humbug, insightful and inept, familiar and foreign, right on target and off the mark. The latter part of the last coupling here, i.e., off the mark, is illustrated by the author's crowing, "The classic comedy goof is the addition of braille markers on buttons at drive-in windows." I am sure I am not the only person with impaired vision who has utilized accessible signage where the ignorant would not expect a blind person to be. A neighbor drove me to my bank when it was closed but customers could do transactions at the drive-in window. Even I, the auto's passenger, could do this. As for the "blind magician" and his "most powerful secrets;" here too I came away with "half a sawed lady," so to speak. After reading the book, one of several successfully published by R.W. Klamm, I am convinced that he has been a very successful professional magician. But I don't think I was presented his best stuff. If it actually represents his most powerful magic, then the fault is entirely in his imperfect prose. In the description of the paper loops that are transformed in surprising ways when sliced lengthwise, his narrative instructs us to "fold each into a loop" when he means "attach the two ends to form a loop." "Give it a twist" means "Give one end a twist before attaching to the other end." When he describes the countdown card trick, he cautions that the deck size must be under thirty, but fails to warn it won't work the same with less than twenty. My favorite of his magician vignettes is his touching tale of pursuing and gaining his self-respect via a stage performance at his high school. The author sketches powerfully the psyche of the kid who feels different because of his disability and who overcomes his self-stigma with an audacious act. The narrator of Fly Like a Bumble Bee, Jack Fox, is superb. He is just as professional as are all the NLS narrators. And, unlike many of his colleagues, he never emphasizes the wrong word in a sentence. When readers emphasize the wrong word, they reveal that they are not paying sufficient attention to the content they are reading. The lack of tone indexing is regrettable, but that mainly impacts on a reviewer trying to go back to a passage earlier in the work. No one else should want to repeat any of this. It is worth reading, but not twice. Some Thoughts about the Da Vinci Code By Martin Kleiber Much controversy has attended the publication of Dan Brown's novel and movie, The Da Vinci Code. The basic premise in this story is that Jesus and Mary Magdalene were married and that the couple had children. After the crucifixion Mary Magdalene and her children fled to what is today. There the descendants of Jesus and Mary Magdalene survive until today. The Christian community, at the behest of the Emperor Constantine, has been and still is engaged in an elaborate conspiracy to suppress these facts. According to Dan Brown, the religious order, Opus Dei, is at the center of the conspiracy to keep these facts from the public. Much is being said and written about Dan Brown's distortions of history and his unfair portrayal of Opus Dei and its members. His theology is not grounded in historically verifiable events nor is it supported by the New Testament. I don't know if Jesus Christ was married to Mary Magdalene. What I am sure of though is that Dan Brown doesn't know either. So, if any one should claim that he or she is descended from Jesus Christ, I would be very skeptical and I would dismiss such a claim out of hand. The harm is not in making such a claim; the harm is in accusing and vilifying an organization such as Opus Dei. For us in the handicapped community the harm done by this book is even more serious. It lies in the contemptuous way in which Dan Brown portrays Silas, the villainous Opus Dei monk afflicted with albinism. The other arch villain in Dan Brown's account is the crippled Teabing. It seems that when Dan Brown needs a villain he has a ready supply, the handicapped. When referring to Silas, Dan Brown steadily tries to reinforces his status as a member of the albinism community. He is a man with a startling appearance. He has red eyes. People with albinism don't even have red eyes! The devil has red eyes and so do vampires. Silas is given red eyes to make him more evil looking. Further he is endowed with strengths and abilities not typical in people with albinism. Silas, without any problem, drives at night all across France. Silas uses his guns with deadly accuracy even when the light isn't good. I can't believe that people with albinism can do these things. Teabing, the man on crutches, is unrestricted by his handicap when he engages in a fight with Silas. I guess, Dan Brown can have it both ways. The crippled can fight. People with albinism can drive and be sharp shooting murders. There is also the questionable depiction of women in Dan Brown's book. He purports that the early church suppressed the knowledge of Jesus' involvement with Mary Magdalene. With that the religion would become more male centric. There would be no place in Christianity for the sacred feminine. So, why did Dan Brown require Robert Langdon, the American professor of symbology, to help Sophie Neveu in solving the code? She was the one trained by her grandfather to know the mysteries of the symbols. She was one of these special people descended from Jesus Christ. Yet, as the story moves on, Robert Langdon plays the increasingly important role and her role diminshes steadily. Where then is the power of the sacred feminine? This is another story where the heroes are male and the villains are handicapped. Dan Brown thinks that disability is an external sign of internal evil. Assistive Technology A Different Vision By Adele Holoch Reprinted with permission from the Burlington Free Press, Vermont. Karen Keeney was raised by her legally blind grandfather, and she remembers riding with him in a car when he drove illegally. Now, as president of Chadwick Optical, an ophthalmic lens laboratory in White River Junction specializing in creating moderately priced custom eyeglass lenses, Keeney is working to help individuals with low vision find safer ways to live with visual impairment. Among lenses the company has created is the EP-Horizontal, or expansion prism lens. This is a pioneering lens that helps increase the scope of sight for individuals who have suffered a visual field loss -- called hemianopia-- after a stroke, brain trauma or tumor. "We're hearing back from people whose lives we've changed," Keeney said. Keeney bought the business -- an old, bankrupt Bausch & Lomb factory - from a venture capital firm in 1980. "It was dead. All we bought was used equipment and no customer base," she said. From those meager roots, Keeney and her then-husband created Chadwick Optical, a traditional ophthalmic lens laboratory. For the couple, who were initially focused on creating volume, getting the business up and thriving was a long struggle, particularly because of the location. White River Junction is not an optimal area for developing a high-volume optical business, she said. "You can do that in metropolitan areas, but not in rural areas," Keeney said. "We weren't in the black for seven years." Shifting focus In 2000, Keeney obtained sole ownership of the business. She saw it as an opportunity to shift the company's direction. "I got to carry on my dreams and put my thoughts into practice, and what I had seen as the future of the business. I wanted to bring meaning into the whole thing, instead of high volume," Keeney said. Specifically, Keeney wanted to focus more on providing lenses and services for low-vision professionals and their patients. She wanted the change to be rewarding, but did not expect it to be lucrative. Sales for the business now "hover around three quarters of a million dollars per year," Keeney said. She has also been successful in finding other sources of funding for the business. In 2003, the company was awarded a grant from the National Institutes of Health's National Eye Institute to develop the EP-Horizontal lens. The grant was a two-year award for nearly half a million dollars, for which Keeney applied at the urging of Dr. Eli Peli, a professor of ophthalmology at Harvard Medical School and senior scientist and Moakley scholar in aging eye research at Schepens Eye Research Institute. Peli and Keeney had met at a conference in Florida. "We had the opportunity to talk about what she was interested in, and it was very much in line with what I was interested in," said Peli, who was developing a prism that would increase the visual fields of patients with hemianopia. "I knew I could do a temporary fit to try this technique, but temporary prisms are made from soft plastic that deteriorates, and it was not a good solution," Peli explained. "I thought she could possibly make for me something that could be a permanent prescription." Finding local talent After Keeney won the grant, Peli and Chadwick Optical worked together to develop the lens. Work required such a high degree of precision that Chadwick Optical had to invest in machine tool equipment and hire a second-shift staff from a local machine shop. "She was able to find some really talented mechanical people there in the area, and with their help, we developed a really usable device," Peli said. Released in April 2005, the EP lens -- which stands for expansion prism (and also named for Eli Peli) -- adds 20 degrees to its users' peripheral field of vision. A woman with normal vision usually has about 170 degrees of peripheral vision, and a man usually sees 160 degrees. For individuals suffering from hemianopia, those fields of vision are reduced to 85 and 80 degrees. The added 20 degrees help patients "walk a whole lot better without bumping into things and being afraid of crowds," Keeney said. In many states, she said, with rehabilitation, training and approval by the Department of Motor Vehicles, individuals using the lenses may be able to drive again. At the MaryAnn Keverline Walls Low Vision Center in the Southern California College of Optometry's Eye Care Center, assistant professor Rebecca Kammer had a patient who participated in a clinical trial of the EP-Horizontal Lens who, with rehabilitation and training, was able to drive with the lenses. "He was just so happy," Kammer said. In addition to the EP lenses, Chadwick Optical develops variable-tint lenses for glare reduction for individuals with macular degeneration, glaucoma and photophobia, as well as other prism and diopeter lenses. The company does not work directly with patients, but serves them through practitioners at low-vision optometry schools and state- and privately run services for the blind and visually impaired. For Keeney, who followed her heart in a reconfiguration of goals for the eight-person business, the work has been tremendously rewarding. "We all love what we do," she said. "There is hope for many of the legally blind, if they just know where to go." Freedom Scientific Announces PAC Mate 4.0 Freedom Scientific announced the release of PAC Mate 4.0. This is a major update for the PAC Mate BX and QX series and offers a number of new features and enhancements that will greatly benefit both students and working professionals. PAC Mate 4.0 is a direct response to user requests. Some of the features in this update that have been suggested by users include: • The ability to have two FSEdit documents open at once • Numerous FSCalc enhancements, like setting precision, toggling between degrees and radians, calculator memories, new scientific and conversion functions, and more • A secondary braille language option so users can read foreign language documents on the braille display using the correct braille language • Expanded Braille Study Mode that provides help identifying braille symbols in any document or Web page, even with the secondary language active In addition, PAC Mate 4.0 features a simplified help system that is especially ideal for beginning PAC Mate users. Through a single keystroke, users can receive Help information that is specific to where they are in PAC Mate. Support has also been added for the Metrologic MK6720-73A07 omni-directional, handheld USB bar code scanner, making it easier than ever to identify products by their bar codes using the PAC Mate with ScanTalker(tm). For those who want to record, edit, and convert recordings directly onto a CompactFlash(r), card, the makers of Resco Audio Recorder have designed a custom interface especially for PAC Mate 4.0. This intuitive new interface takes all of the mystery out of using Resco's powerful mainstream application. Visit the PAC Mate 4.0 page on the Freedom Scientific Web site to view a complete list of new features. Users with a current warranty or Annual Software Agreement (ASA) can download the update at no charge. Otherwise, the update costs $115.00. Call Freedom Scientific at 800-444-4443 www.freedomscientific.com Independent Living Aids Introduces the Magnifico Plus PDA/GPS Magnifier Independent living aids, (ila) Inc., has announced the addition of the new and improved Magnifico Plus PDA/GPS magnifier (patent pending) to its comprehensive inventory of products. This unique invention easily magnifies PDA's, GPS's or other handheld computer displays such as an iPod or BlackBerry. Magnifico Plus may relieve eyestrain for the visually impaired who enjoy such modern conveniences. The Magnifico Plus improves upon the previous model by being more universal and ergonomic. The Magnifico Plus has some excellent features: --The 2.5X acrylic lens will literally 'telescope out' with the flick of a finger --Collapses to stowaway size with the same ease --Very affordable at only $49.95 plus handling and shipping --Easy to use: clips onto your portable communication device, GPS, iPod, BlackBerry or just about any other handheld device. --Can also be used to magnify a pocket calendar, a pill bottle, cell phone or anything that fits under the magnifier --Can be easily moved to the optimal position and then folded flat to fit into your briefcase or purse --By using it, the screen on your PDA (etc.) can be enlarged 2.5X to enable you to easily read it --Velcro is supplied to enable you to attach your device to the base --The lens measures 4 inches x .63 inches The Magnifico Plus can be ordered by calling 1-800-537-2118 or online at: http://www.independentliving.com/?cid=N-pressrelease-4 Request for Contributions CCLVI gratefully accepts contributions from readers and members to help pay for the costs of publishing VISION ACCESS, the costs related to our 800 line and Project Insight, and for funding the Carl E. Foley and Fred Scheigert Scholarships. Please send contributions to CCLVI Treasurer, Mike Godino, 104 Tilrose Avenue, Malverne, NY, 11565-2040. Our Tax ID number is 52 1317 540. Resources American Printing House for the Blind Nancy Glur 1839 Frankfort Ave. Louisville, KY 40206 CCLVI Chapters Delaware Valley Council of Citizens with Low Vision 215-735-5888 California Council of Citizens with Low Vision 800-733-2258 Metropolitan Council of Low Vision Individuals 845-986-2955 National Capitol Citizens with Low Vision 703-645-8716 ncclv@yahoo.com Center for Medicare and Medicaid Services cms.hhs.gov/CompetitiveAcqforDMEPOS/ Clinical Trials www.clinicaltrials.gov www.who.int/ictrp/consultation/en/index.html International Council of Medical Journal Editors (ICMJE) www.actr.org.au www.isrctn.org www.umin.ac.jp/ctr/index/htm, and www.trialregister.nl Dialogue Magazine Blindskills, Inc., P.O. Box 5181, Salem, OR 97304 800-860-4224 info@blindskills.com www.blindskills.com Freedom Scientific 800-444-4443 www.freedomscientific.com Independent Living Aids 800-537-2118 http://www.independentliving.com/?cid=N-pressrelease-4 ITEM Coalition www.itemcoalition.org. Newsweek Magazine P.O. Box 2120 Radio City Station New York, NY 10101- 2120 Council of Citizens with Low Vision International An Affiliate of the American Council of the Blind 2006 Membership Application Name___________________________________________________ Address_________________________________________________ City_________________ State _____ Zip Code _________________ Country ________Phone _________ E-Mail ____________________ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Membership Status: I am: ___ New member. ____ Life member of CCLVI. ___ Renewing my membership. ____ Life member of ACB. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Visual Status: I am a: ___ person with low/no vision. ___ fully sighted person. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - I wish to receive the CCLVI publication, Vision Access in: ___ Large print ___ Cassette ___ E-mail ___ Do not send - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Please send the American Council of the Blind Braille Forum in: ___ Large Print ___ Cassette ___ Computer Disk ___ E-mail ___Braille ___ Do Not Send - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Dues Structure (Payable in up to three annual installments): _____ Individual $15.00 _____ Organization or Agency $25.00 _____ Life Member $150.00 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Payment Due: $_______ Annual Dues $_______ Life Membership Dues (full or installment) $_______ Additional Donations $_______ Total Amount - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Make check or money order payable to "CCLVI" and send to CCLVI Treasurer: For Office Use Only: Mike Godino Date Paid:______ Date of Dep______ 104 Tilrose Avenue Check # ______$______ Cash______ Malverne, NY 11565-2024 Ph: 800-733-2258 http://www.cclvi.org Council of Citizens With Low Vision International 1155 15th Street NW, Suite 1004 Washington, DC 20005 (800) 733-2258, wwwcclvi.org Officers and Directors 2005-2006 President Patricia Beattie (04-06, 2nd term) 906 North Chambliss Street Alexandria, VA 22312-3005 703 642-1909 h 703 578-6513 w 703 671-9053 fax pbeattie@nib.org 1st Vice President Bernice Kandarian (04-06, 2nd term) 2211 Latham Street, #120 Mountain View, CA 94040-1652 650 969-1688 h bernice@tsoft.net 2nd Vice Pres Coletta Davis (04-06, 1st term) 2879 East Alden Place Anaheim, CA 92806-4401 714 630-8098 h 714 666-2494 fax coletta@fea.net Secretary Carolyn Hathaway (04-06 1st term) 4831 Dueber Avenue SW Canton, OH 44706-4296 330 484-3807 carolynmu@sbcglobal.net Treasurer Mike Godino (04-06, 1st term) 104 Tilrose Avenue Malverne, NY 11565-2024 516 887-1336 h mikeg125@optonline.net Past President Ken Stewart (02-??) 34 Points of View Warwick, NY 10990-2431 845 986-2955 h 212 664-1038 h (mid-week) cclvi@yahoo.com Directors Lisa Boettcher (04-07, 1st term) 3608 South Blue Cedar Lane Columbia, MO 65203-6614 573 445-5544, lwb6c9@mizzou.edu William Burgunder (*05-06 partial term) 623 Berkshire Ave Pittsburgh, PA 15226-2041 412 531-6876 waburgunder@earthlink.net Kathy Casey (*05-08 1st term) 1 Twiller Street Albany, NY 12209-2127 518 462-9487 h kcasey03@nycap.rr.com Edwin Druding (05-08 1st term) 7628 N 49th Ave Glendale, AZ 85301-1512 623 937-1211, drdruding@cox.net John Horst (05-08, 1st term) 249 Holly St Elizabethtown, PA 17022-1621 717 367-6328 pcb1@paonline.com, jjkhor95@epix.net Jane Kardas (*03-06, 2nd term) 810 Maple Avenue Ukiah, CA 95482 707 468-5510 h/fax janecalvert35@yahoo.com Barbara Milleville (04-07, 1st term) 2712 Livingstone Lane #103 Vienna, VA 22180-7264 703 645-8716 h bmilleville@mindspring.com Fred Scheigert (04-07, 3rd term) 123 South Pitt Street Alexandria Virginia, 22314-3111 703=5491458h fredScheigert@comcast.net WEINGER, JERRY (03-06, 1st term) CHERRY HILL, NJ 08003-5123 215-735-5888h jnweinger@comcast.net