CNIB Vision Spring 2008 CNIB strives to be the leader in promoting vision health and enhancing independence for people with vision loss. Highlights • • • • Accessibility for all on Toronto’s transit Charles Bonnet Syndrome 101 Initiative for Equitable Library Access (IELA) Research news Accessibility for all on Toronto's transit The words “Eglinton Avenue, south side stop” may not be music to everyone’s ears, but to Toronto lawyer David Lepofsky, they’re the refrain of a victory march. After a ten-year legal battle with the TTC, Lepofsky, who is blind, won a 2005 human rights ruling ordering the Toronto Transit Commission (TTC) to announce all subway stops. Two years later, in July 2007, a second human rights tribunal ordered the TTC to announce all stops on bus and streetcar routes. The tribunal, presided at by Justice Alvin Rosenberg (who also adjudicated the first tribunal), gave the TTC 30 days to start calling bus and streetcar stops and enforce the new policy. “I had been using TTC for years, and it struck me as ridiculous that there were no stop announcements on Toronto’s subway,” says Lepofsky. “When I lived in Boston for a year in the early 1980s, I noticed that their subway drivers announced all route stops, and had wondered since then why TTC didn’t do the same thing. In fact, several other transit systems around the world had similar announcements.” In addition to the second ruling, the TTC was also ordered by the tribunal to undertake “extensive human rights training,” says Lepofsky, and to hold a public forum on accessibility for its patrons with disabilities “in order to learn what they’re not doing right.” Lepofsky, who practices law full-time, says the subway issue was his first focus of attention, but after he moved to a house that required him to take a bus, the bus stop announcements became increasingly important to him. “I rarely rode buses, but then I got married and moved to a house on a bus route,” he explains. “That led me to pursue the bus case. I had raised it earlier, but it became more important to me.” “This whole case became important to me for a couple of reasons. It was an obvious one for people with vision loss, because we don’t drive. But the TTC’s recalcitrance [in consistently and reliably announcing all route stops] became a symbol of the obstacles faced by people with disabilities,” he says. Adding that this was “my hobby, not my job,” Lepofsky says that he spent “hundreds of hours” of his own time on the case, plus 11 days in hearings for the first case and six in the second. “There were hours of preparation,” he recalls. “But I was fortunate in two ways,” he says. “First, I happen to be a lawyer and have a skill set I can use. Second, I was able to get two law firms to assist me – one with the subway case and one with the bus/streetcar case: Mary Cornish, with Cavalluzzo Hayes Shilton McIntyre & Cornish, and Clifford Lax and his assistant Amy Salyzyn, from Lax, O’Sullivan and Scott. He also had the assistance of a CNIB orientation and mobility specialist as an expert witness. “CNIB believes that all transit station stops should be announced,” says Lesley MacDonald, National Coordinator, Accessible Design Services, CNIB. “By announcing all stops, transit authorities provide all transit users, including people with vision loss, with the independence to make their own choices.” Previous to the ruling, TTC only required its bus and streetcar drivers to announce major intersections and passenger-requested stops, which they didn’t do consistently and reliably. Riders with vision loss had to ask the driver to announce their stop, and then sit near them to ensure that the stop was called. This could be a huge challenge when entering a crowded streetcar by the rear doors, for example. On subways, stops were sometimes announced, sometimes not, meaning riders with vision loss were required to ask other passengers to indicate the station stops for them. Lepofsky’s work has changed all that. “The rulings give riders with vision loss the ability to sit where they like on the bus, the freedom to learn the route as they go, the ability to relax or read on the bus, the independence to change their minds and get off at a different stop, and the ability to arrive at their destination on time – all of the rights other transit riders enjoy,” emphasizes MacDonald. Accessibility has benefits for riders without vision loss as well, says Lepofsky, noting that sighted passengers can now relax and travel an unfamiliar route without having to peer out bus windows to watch for street signs, or struggle to see their destination through darkness or bad weather. “Access helps everyone,” he insists. “It’s not just ‘people with disabilities versus others.’ It helps make TTC more user-friendly for tourists, for example.” Lepofsky adds that he’s had very positive responses to his victories. “I’ve been very touched by the feedback from the public,” he says. “The case has gotten coverage across Canada and even in Israel. On a recent trip I was approached on a street in Tel Aviv. People simply can’t believe it’s a fight,” he adds laughing. Best of all, “a TTC driver congratulated me recently; I was delighted,” he chuckles. “There are lots of barriers like this that we face,” he concludes. “Some aren’t as easy to remove as this one.” Don't put your sunglasses away! Your eyes need protection from the sun all year round – the same as the rest of your body. The two main risks are damage from the sun’s UV rays, and discomfort caused by glare. A glaring problem Glare is nearly always present during daylight hours, whether the sun is shining or not. Bright reflections off shiny surfaces like snow, vehicles or buildings can cause irritation and discomfort as your pupils contract, your eyelids narrow and the muscles around your eyes constrict as you squint to see properly. Besides being painful, glare can also be a dangerous distraction during driving or sporting activities. Reflect on this A far more serious problem, however, are the sun’s ultraviolet (UV) rays. In the short term, exposure can actually cause a sunburn on the surface of your eyeball. Long-term exposure increases your risk of developing two more serious conditions: cataracts and age-related macular degeneration (AMD). Try before you buy A pair of good-quality sunglasses will help protect your eyes from UV damage and fatigue. Look for a manufacturer’s label indicating that the glasses offer 99 to 100 per cent UV A and B protection. If you’re unsure, ask the sales assistant or your eye care professional for guidance. Sunglasses should be dark enough to reduce glare, but not dark enough to distort colours or interfere with your ability to recognize things like traffic signals. Tint (ie. blue, green or brown) is mainly a matter of personal preference. The bigger the better Lenses should be large enough to block light entering from the sides. Those little John Lennon specs may look cool on your favourite movie star, but don’t offer much protection for your eyes. Sports models that wrap all the way around the temples are ideal. When in doubt, a hat with a wide brim can help block sunlight that comes in from overhead. Don’t forget the kids Just as you wouldn’t send the kids out in the sun without sunscreen, children should also wear sunglasses to protect their eyes. These should be real, not toy, sunglasses with 99 to 100 per cent UV protection, just as with adult sunglasses. To reduce the risk of breakage, look for polycarbonate lenses, which are more shatter-resistant than regular lenses. Newsflash Microsoft and the DAISY Consortium have developed a free, downloadable plug-in that translates documents into DAISY XML files. Files can then be processed to produce digital audio and other formats used by people with vision loss or print disabilities. For more information, visit www.daisy.org. The CNIB Library announces an exciting new section for users of the CNIB Digital Library. “Discovery Guide: 60 Plus” offers quick and easy access to news, an online book club, Health Source and other reference tools, as well as help for new users. For more information, call 1-800-268-8818 or email digital.library@cnib.ca. Consumer Product Spotlight Keep yourself organized and on time with this revolutionary handheld, battery-powered PDA featuring just three simple buttons – your voice does the rest. TapMemo’s features include memo pad, phone book, calendar, alarm clock, time and date, and a unit locator function that “shouts” when you whistle for it. Locking command allows you to guard against unwanted use and protect your personal data. Phone dialer function lets you dial a phone number simply by placing the TapMemo near a phone handset. Works right out of the box – no “voice training” required. Unit asks “What did you say?” if commands are unclear. Comes with stereo earphones, charger, belt clip and user manual on audio CD. To learn more about this product and others, call toll-free 1-866-6591843, email store@cnib.ca or visit www.cnib.ca. Newsflash CRTC approves The Accessible Channel The CRTC recently approved The Accessible Channel, a national, Englishlanguage digital specialty service that will feature described as well as closed-captioned programming for viewers with vision or hearing loss. Visit www.voiceprintcanada.com for more information. Toronto college offers Intervenor courses George Brown College in Toronto now offers a two-year Intervenor for Deafblind Persons program. The first and largest of its kind in Canada, it was developed in partnership with service providers and deafblind consumers’ associations. Visit www.georgebrown.ca for more information. Charles Bonnet Syndrome 101 “Yesterday upon the stair, I met a man who wasn’t there. He wasn’t there again today – Oh, how I wish he’d go away!” — William Hughes Mearns Charles Bonnet syndrome, or CBS, is a rare phenomenon named after the Swiss naturalist Charles Bonnet, who in 1760 described a condition in which otherwise mentally healthy people experienced vivid, complex visual hallucinations. Bonnet first documented these hallucinations in his 87-year-old grandfather, who was nearly blind from cataracts in both eyes but still “saw” people, birds, carriages, buildings, tapestries and scaffolding patterns, among other illusions. Most people with Charles Bonnet Syndrome already have some significant vision loss due to age, or from damage to the eyes or optic pathways. Central vision loss due to conditions such as age-related macular degeneration (AMD), combined with peripheral vision loss from glaucoma, may predispose someone to CBS. “Up to 30 per cent of people undergoing vision rehabilitation have CBS,” says Mary Lou Jackson, an ophthalmologist specializing in vision rehabilitation, and director of the vision rehabilitation service at Harvard's Medical School. One key characteristic of these hallucinations is that generally the pictures are quite pleasant – although the experience itself can be frightening. Often people with CBS keep quiet about their symptoms for fear that others will think they have a mental illness or dementia. “People tend not to talk about it, and doctors don’t ask about it,” says Jackson. “This is changing, though.” There are many ways to cope with the hallucinations caused by CBS. “People tend to have them when they’re drowsy,” says Jackson, “so we recommend having more stimulation, such as a brighter light.” It’s important not to self-diagnose, she adds, as there are other more serious conditions that can also cause hallucinations. Speak with your family doctor or eye care professional if you are having difficulties with hallucinations or other problems with your vision. Spotlight From babysitting six-year-old triplets to finding fun ways to fundraise, 13year-old Meaghan Walker makes helping others a part of her life. This past year, Meaghan raised $450 for CNIB by selling lemonade in the summer and handmade holiday cards at her school. “I had heard about CNIB but it wasn’t until I met Olivia that I was inspired to help,” says Meaghan. Olivia, one of the triplets she babysits regularly, has vision loss. Along with fundraising for CNIB, Meaghan also made a movie over the summer showcasing Olivia. “Even though Olivia cannot see, she continues to be independent. I wanted to help everyone with vision loss be as independent as she is.” Meaghan and Olivia’s family were guests of honour at CNIB’s annual Tree of Independence lighting ceremony. For more information on how you can help, visit www.cnib.ca. Research in Brief Verdana font top choice among people with certain eye conditions In 2006, CNIB launched Clear Print, a set of standards for making print materials more accessible for people with vision loss. They were based on the best evidence available at the time, including a CNIB study of typeface fonts, conducted with people with age-related macular degeneration (AMD). Since then, two more research studies investigated fonts preferred by people with glaucoma and diabetic retinopathy. “With the aging population, and as these eye conditions become more common, more and more people will find it difficult to read everyday items like newspapers, menus and prescriptions,” says Deborah Gold, associate director of CNIB Research. The study looked at a number of commonly used fonts. Verdana, an MSWindows font, came out as the most accessible and is recommended for use whenever possible. Lucinda and Arial were also good. Times Roman was the least preferred and should be avoided. Visit www.cnib.ca to view and download a copy of Clear Print. Advocacy Highlights Canadians who are living with vision loss or a print disability may soon have fuller, faster access to library collections across the country, thanks to a unique initiative by Library and Archives Canada. A recent funding boost of $3 million from Heritage Canada will support the Initiative for Equitable Library Access (IELA), which aims to assist Canadians who are unable to read standard printed material. The Honourable Josée Verner, Minister of Canadian Heritage, Status of Women and Official Languages, recently announced the funding, noting that the initiative “will encourage the full participation of all Canadians in today's highly competitive knowledge economy.” The IELA project will be carried out in partnership with Canadian libraries, people with print disabilities, publishers, producers of alternative-format materials and other stakeholders, including CNIB and the education sector. "Canada's library community has asked us to take the lead to ensure that all Canadians have consistent library access to information – wherever they live and whatever their means," said Ian Wilson, Librarian and Archivist of Canada. "(This) initiative will allow many more Canadians to take advantage of information resources by providing it in a format they can use." Currently, less than five per cent of published materials in Canada are available in alternative formats. Visit www.canadianheritage.gc.ca for more information. Newsflash Walter Gretzky was named to the Order of Canada in December 2007, for both his contributions to minor hockey in Canada and his dedication to helping local, provincial and national charities, particularly CNIB. The Gretzky family takes personal interest in the CNIB Scholarship Program and CNIB's SCORE Summer Program for youth with vision loss. Walter attends a series of celebrity golf tournaments across Canada each summer. For more information, visit www.cnib.ca/gretzky. Ask the Expert Q: Do vitamins help a person with age-related macular degeneration (AMD)? A: Yes, certain vitamins can help. The AREDS (Age-Related Eye Disease Study) conducted by the National Eye Institute in the U.S. showed that when patients with either moderate or advanced dry AMD in one eye took antioxidant supplements, their risk of AMD progression was lowered. These are not regular over-the counter multivitamins, however: talk to your ophthalmologist about taking the AREDS formula. If you are then advised to take these vitamins, let your primary care physician know you are doing so. Smoking and AREDS The complete AREDS formulation may not be for you if you currently smoke cigarettes or have stopped smoking within the last year. Beta-carotene, one of the ingredients in some AREDS vitamin formulations, can increase your risk of lung cancer. Further study An AREDS II study is now looking at lutein, zeaxanthin and omega-3 polyunsaturated fatty acids to determine whether these supplements will decrease the risk of progression of AMD. It will also test beta-carotene to see if it may decrease the effectiveness of the combination of vitamins and minerals used in AREDS I. Diet and nutrition A study from the Netherlands recently reported that individuals who consumed higher amounts of vitamins C and E, beta-carotene and zinc had a reduced risk of AMD. In addition, vegetables such as spinach, kale and corn are good sources of lutein and zexanthin, which may play a part in retinal health. Wild salmon, sardines and flaxseeds are some examples of excellent sources of omega-3 fatty acids. The bottom line The topic of vitamin supplementation and diet in AMD prevention is complicated and evolving. Consult with your eye care professional to learn more. The Expert Mary Lou Jackson, Director, Vision Rehabilitation Service, Massachusetts Eye and Ear Infirmary and Clinical Instructor, Harvard Medical School. Ask the Expert Have a vision-related question? Let us know! It could be featured in the next issue. Write to info@cnib.ca. Tax-wise giving benefits you and CNIB With tax season upon us, you may want to take a minute to think about some tax-wise strategies for next year. Securities are tax smart If you own stocks or mutual funds, a gift of securities is a very tax-smart way to give. You can transfer a gift of your securities directly to CNIB's brokerage account, pay no capital gains tax and get a full tax receipt for the value of your gift. This can be a win for you and a win for the work of CNIB. RSP rollovers may be a good time to give If your RSP is due to rollover, you may want to consider making a donation to a charity as part of your rollover strategy. Your gift may save you some tax and also help fund CNIB programs and services. Charitable Remainder Trusts can be the ultimate gift Finally, there is a somewhat complex charitable giving vehicle called a Charitable Remainder Trust. This method of giving can offer substantial tax benefits but you need to be 75 or older, financially sophisticated and have a good personal financial advisor. Look before you leap For any gift of assets, CNIB urges you to consult with your personal tax expert, financial advisor, bank or lawyer to ensure that a particular gift is the right choice for you. For more information on tax-smart gifts, please visit www.cnib.ca/en/support/donate/assets or contact Ann Rosenfield, Director of Major Gifts at ann.rosenfield@cnib.ca or 1-800-563-2642 ext. 7594. Right to Sight Campaign Tackles Needless Vision Loss in Canada If you have wet AMD, there’s some good news. A groundbreaking treatment called Lucentis was approved for use in Canada – it’s the first clinically proven drug to restore vision for many wet AMD patients. The trouble is, not everyone can afford Lucentis, which costs about $1600 per dose. In 2007, Canada’s Common Drug Review (CDR), a body that recommends whether drugs should be covered by government health plans (except for Quebec, which already reimburses Lucentis), issued a negative recommendation. Meanwhile, the government of Ontario has been reviewing Lucentis separately under its rapid review process. CDR was expected to reconsider the ruling by February 1. In an effort to overturn the initial decision, which would have seen thousands of Canadians going needlessly blind and cost more in direct and indirect health costs than the expense of treating people, CNIB swung into action with the Right to Sight advocacy campaign. The issue received significant media coverage and Canadians sent 8,000 letters to decision-makers. At press time, the outcome of the CDR decision and the Ontario rapid review were unknown. To learn more about the issue or to join the Right to Sight email list, visit www.righttosight.ca or call 1-800-563-2642. Newsflash Are you ready for a real challenge this summer? Looking for some career information? Want to take charge of your future? And most importantly, do you want to make new friends, learn new skills and have fun? CNIB is now accepting applications for this year’s SCORE Summer Program for youth ages 16 to 18 who are deafblind or living with vision loss. This year’s program will take place from July 20 to August 2. For more information about the program and to obtain an application, please visit www.cnib.ca/score or contact us at score@cnib.ca. Deadline for applications is March 28, 2008. Thumbs Up To the Grand Chapter of the NS/PEI Order of the Eastern Star, whose gift will fund a CD duplicator for the CNIB Library. To the Variety Club of BC for its generous donation of funds, accessibility equipment and training time to CNIB. To the Paloma Foundation, for supporting CNIB’s Early Intervention Services for young children with vision loss and their families. To Newfoundland singer-songwriter Terry Kelly for his inspirational work on behalf of people with vision loss across Canada and around the world. CALENDAR OF EVENTS ALBERTA May 8 Edmonton 22nd Annual Visions Luncheon The Westin Edmonton Tickets are $900 per table of ten or $100 each. For more information, contact Sharon McIntyre at 453-8333. May 9 Calgary 2008 CNIB Visions Luncheon Telus Convention Centre Tickets are $100 per person or $1000 for a table of 10. For more information, contact Pam Swan at 403-261-7208. June 9 Northwest Territories Annual Walk for Independence For more information, call 867-873-2647. June 16 Edmonton 4th Annual Walter Gretzky CNIB Golf Classic For more information, contact Sharon McIntyre at 453-8333. July 12 Grande Prairie 6th Annual Faircreek Golf Tournament Fairview Golf Club Registration includes: 18 holes, dinner and prizes. For more information, please call 780-539-4719. July 18 Yellowknife NWT Charity Golf Tournament For more information, please call 867-873-2647. BRITISH COLUMBIA How you can help We invite you to get involved with CNIB. Volunteer, donate or learn more about our programs and services. And if you, or someone you know, might need CNIB’s help, we’re here for you. For more information, visit www.cnib.ca or call 1-800-563-2642. Looking for the latest vision health information? CNIB Insight is a free source of trusted vision health news and information delivered directly to your email inbox. Sign up today! Visit www.cnib.ca/insight. MANITOBA How you can help We invite you to get involved with CNIB. Volunteer, donate or learn more about our programs and services. And if you, or someone you know, might need CNIB’s help, we’re here for you. For more information, visit www.cnib.ca or call 1-800-563-2642. Looking for the latest vision health information? CNIB Insight is a free source of trusted vision health news and information delivered directly to your email inbox. Sign up today! Visit www.cnib.ca/insight. NEW BRUNSWICK CNIB hosts events across New Brunswick all year round in support of CNIB’s mission – to be the leader in promoting vision health and enhancing independence for people with vision loss. The 2008 Annual CNIB Gala is one such event. This year it will be held at the historic University of New Brunswick, Fredericton Campus, on Saturday, May 31. It’s an exciting opportunity for the community to come and enjoy an evening of music with the George Street Blues Project, while learning more about the fascinating world of adaptive technology through interactive displays. If you would like to learn more or volunteer for this exciting event, please contact Jackie Duguay at 506-458-0070 or jackie.duguay@cnib.ca. For more information about CNIB activities, visit www.cnib.ca. NEWFOUNDLAND AND LABRADOR Access to Literacy Program Access to Literacy is about helping people with vision loss or a print disability develop the literacy skills they need to be independent and confident. Less than five per cent of all printed materials are available in an alternative format such as digital audio books, digital text, large print and braille. By supporting Access to Literacy, CNIB partners help close the information gap between people who can and people who cannot read regular print. Corporate Sponsors: The Telegram • Pioneers • VOCM Proudly supported by: Rotary Club of St. John’s • Rotary Club of St. John’s East • Newfoundland Containers For more information, please contact Carmelita Joy-Bolger at 1-800-5632642, ext. 231 or carmelita.joy-bolger@cnib.ca. Vision Health Month April is Vision Health Month. Keep checking www.cnib.ca for more information. Adult Camp From August 3 to 9, the Lions Max Simms Memorial Camp in Bishop’s Falls will be hosting an Adult Camp for people with vision loss. Interested campers can contact Don Connolly at 726-5975 for more information. NOVA SCOTIA AND PRINCE EDWARD ISLAND Thank you to The Grand Chapter of the Order of the Eastern Star! The Grand Chapter of the Order of the Eastern Star proudly supports CNIB’s Access to Literacy program. Its generous donation of over $35,000 will purchase a CD duplicator for the CNIB Library and digital talking book players, bringing access to literacy to thousands of Canadians living vision loss or a print disability. Learn more about CNIB and how you can help. Visit www.cnib.ca. Looking for the latest vision health information? CNIB Insight is a free source of trusted vision health news and information delivered directly to your email inbox. Sign up today! Visit www.cnib.ca/insight. ONTARIO It’s getting hot, hot,hot, on the catwalk! While the temperature may be dropping outside, it promises to rise across Ontario cities this spring when professional firefighters take to the stage in Hot Night in the City. A sizzling fashion show to benefit CNIB will showcase the season’s hottest trends to hundreds of fashion enthusiasts. Visit us online at www.cnib.ca/hotnight for more information or contact Carrie Stevenson at carrie.stevenson@cnib.ca or 1-800-265-4127 to purchase tickets. Upcoming vision health workshops April 1 – Owen Sound April 2 – London May 8 – Lindsay May 13 – Thunder Bay May 14 – Timmins May 15 – Sault Ste. Marie For more information or to register, call 1-866-577-7727 or email jesse.cressman@cnib.ca. Annual Door-to-Door Campaign Throughout the month of May, CNIB volunteers will be canvassing for our annual Door-to-Door campaign. Canvassers can be identified by their official blue and white CNIB volunteer buttons. They will be knocking on doors across communities in Ontario. Visit www.cnib.ca/doortodoor for more information or contact doortodoor@cnib.ca or 1-866-272-3687 to donate or volunteer. For information on other CNIB events, visit www.cnib.ca/ontario. QUEBEC Computer Training Whether you want to learn about Windows, Word, Excel, surfing the web or using the CNIB Digital Library, you’re sure to find a class that meets your needs. Some distance classes available. For more information, please contact Pascale Roy at 1-800-465-4622, ext. 223. Peer Support Everyone needs someone to talk to, especially when you are going through something difficult like vision loss. That’s why CNIB offers Canadians an opportunity to exchange stories with peers and discover tools and tricks to overcome vision loss. Participate in CNIB’s weekly and confidential friendship calls, distance talk and support groups or face-to-face workshops. For more information, please contact Larissa Klymkiw at 1-800-4654622, ext. 225. SASKATCHEWAN How you can help We invite you to get involved with CNIB. Volunteer, donate or learn more about our programs and services. And if you, or someone you know, might need CNIB’s help, we’re here for you. For more information, visit www.cnib.ca or call 1-800-563-2642. Looking for the latest vision health information? CNIB Insight is a free source of trusted vision health news and information delivered directly to your email inbox. Sign up today! Visit www.cnib.ca/insight. CNIB Vision Toll-free: 1-800-563-2642 Email: cnibvision@cnib.ca Spring 2008 Editors: Lisa Pretty, Jessica Parrales Charitable Organization No. 119219459 RR0003 CNIB Vision is also available in French, electronic and alternative formats.