The ACB Braille Forum Volume LVII November 2018 No. 5 Published by the American Council of the Blind ***** ** Be A Part of ACB The American Council of the Blind (TM) is a membership organization made up of more than 70 state and special-interest affiliates. To join, contact the national office at 1-800-424-8666. ** Contribute to Our Work Those much-needed contributions, which are tax-deductible, can be sent to Attn: Treasurer, ACB, 6300 Shingle Creek Pkwy., Suite 195, Brooklyn Center, MN 55430. If you wish to remember a relative or friend, the national office has printed cards available for this purpose. Consider including a gift to ACB in your Last Will and Testament. If your wishes are complex, call the national office. To make a contribution to ACB by the Combined Federal Campaign, use this number: 11155. ** Check in with ACB For the latest in legislative and governmental news, call the “Washington Connection” 24/7 at 1-800-424-8666, or read it online. Listen to ACB Reports by downloading the MP3 file from www.acb.org, or call (605) 475-8154 and choose option 3. Tune in to ACB Radio at www.acbradio.org or by calling (712) 775-4808. Learn more about us at www.acb.org. Follow us on Twitter at @acbnational, or like us on Facebook at www.facebook.com/AmericanCounciloftheBlindOfficial. © 2018 American Council of the Blind Eric Bridges, Executive Director Sharon Lovering, Editor 1703 N. Beauregard St., Suite 420, Alexandria, VA 22311 ***** Table of Contents House Passes Marrakesh Treaty Implementation Act Tour Teasers: Erie Canal, Niagara Falls, and Baseball, by Janet Dickelman Will You Vote?, by Larry Johnson It’s Holiday Auction Time!, by Carla Ruschival Benefits of Audio Description in Education Contest My Experience at the 2018 Conference as a Leadership Fellow, by Darian Slayton Fleming Summary of 2018 Resolutions The Pitfalls of Being a Caregiver, by Larry P. Johnson November: A Time to Give Thanks, by Sharon Lovering A Gift – For Your Favorite Affiliate, by Kathy Brockman Get Connected with ACB Next Generation, by Amanda Selm Affiliate News What’s in the Mini Mall?, by Carla Ruschival Here and There, edited by Sharon Strzalkowski ACB Officers ACB Board of Directors ACB Board of Publications Accessing Your ACB Braille and E-Forums ** Are You Moving? Do You Want to Change Your Subscription? Contact Sharon Lovering in the ACB national office, 1-800-424-8666, or via e-mail, slovering@acb.org. Give her the information, and she’ll make the changes for you. * Keep up with the most important ACB news and announcements without any other chatter. Subscribe to the ACB Announce listserv. Send a blank e-mail to announce-subscribe@acblists.org, or visit www.ablists.org/mailman/listinfo/announce and type your e-mail address and name where indicated. * Keep up with the haps when affiliates stream conventions at www.acbradio.org/news. * Want to stream your convention? ACB Radio can help you out; write to larry@acbradio.org. ***** House Passes Marrakesh Treaty Implementation Act Treaty Now Moves to State Department WASHINGTON — Late Tuesday night, Sept. 25, the U.S. House of Representatives passed the Marrakesh Treaty Implementation Act (S. 2559). The implementing legislation now moves to the President’s desk for signage, and the treaty to the State Department for final preparation of the diplomatic papers allowing the U.S. to become one of the official Marrakesh countries committed to the expanded availability of accessible published works from around the world. “We’re excited that Congress was able to move Marrakesh over the legislative finish line during its final days of business before leaving for the October recess,” said ACB president Kim Charlson. “But what is most exciting is that U.S. citizens who are blind or have other print disabilities will soon be able to have access to special format materials available in other countries in English and other languages, as well as people with all types of print disabilities around the world who will soon be able to gain access to American published works for the first time in an accessible format.” The Marrakesh Treaty was the product of years of deliberations between the World Intellectual Property Organization (WIPO), publishers, libraries, and disability rights advocates. The treaty was a response to the grave concerns over the cumbersome international copyright laws that make it difficult to gain access to published works in accessible formats like braille or audio format. The act, which was brought to the House floor by Rep. Bob Goodlatte, Chairman of the Judiciary Committee, amends U.S. copyright law necessary for full implementation of the treaty. The legislation passed with unanimous consent. “We’ve had countless numbers of advocates who have helped make this treaty a reality in the United States,” said Eric Bridges, ACB’s executive director. “We wish to thank the U.S. Congress, particularly House Chairman Goodlatte and Senate Foreign Relations Chairman Bob Corker for showing true leadership by shepherding this treaty through the legislative channels.” ***** Tour Teasers: Erie Canal, Niagara Falls, and Baseball by Janet Dickelman As you read this article, the convention committee will be visiting Rochester, N.Y., the site of ACB’s 2019 conference and convention. We have already determined that our first Friday evening tour will be a plated dinner cruise through the locks on the Erie Canal. Our final Friday tours will be a trip to Niagara Falls and an evening Red Wings baseball game including a picnic supper. The Red Wings are the minor league farm team of the Minnesota Twins. We are still working on the tour during the day on Friday, July 5th and the tours that will occur during the week. Dates for the 2019 convention are Friday, July 5th through Friday, July 12th. The opening general session will be Saturday evening, July 6th. Daily general sessions run Sunday through Wednesday mornings, and our final general session will be Thursday the 11th. Be sure to plan to attend our can’t-miss banquet Thursday evening! The exhibit hall will be open Saturday through Wednesday. ** Staying in Touch Once again, the convention announce list will be filled with information! To subscribe to the list, send a blank e-mail to acbconvention-subscribe@acblists.org. If you received updates for the 2018 convention, you need not re-subscribe. ** Hotel Details Room rates at the Hyatt and the Riverside are $89 per night (single or double occupancy, with an additional $10 per person for up to four people). This room rate does not include tax, which is currently 14%. Make telephone reservations by calling the Riverside at (585) 546-6400, or the Hyatt at 1-800-233-1234 or (585) 546-1234. Make sure to mention you are with the American Council of the Blind. Rooms must be booked by June 7, 2019 to guarantee the convention rate. To make reservations online, visit www.acb.org and follow the 2019 convention link. ** Convention Contacts 2019 exhibit information: Michael Smitherman, (601) 331-7740, amduo@bellsouth.net 2019 advertising and sponsorships: Margarine Beaman, (512) 921-1625, oleo50@hotmail.com For any other convention-related questions, please contact Janet Dickelman, convention chair, at (651) 428-5059 or via email, janet.dickelman@gmail.com. ***** Will You Vote? by Larry Johnson Do you care about Social Security benefits, Medicare, SSI, SSDI, food stamps, the cost of prescription drugs, health care services, broken sidewalks or potholes in the street? Does it matter to you how much you pay for taxes or how safe you and your family are in your community from gun violence and crime? Do you vote? Or are you one of those people who think voting is a complete waste of time, and keep on complaining about how the government is a total failure and that nothing you can say or do will matter? Then you are a victim of apathy. And you are right. Nothing will get done to make things better. Because you don’t care. And if you don’t care, why should the politicians? Their attitude reflects your attitude. If you don’t give a damn, why should they? It’s a lot easier to do nothing and then complain. Your inaction, your apathy, your failure to speak up and speak out gives politicians and elected officials the permission, the excuse, to do nothing. In July the Americans with Disabilities Act turned 28. So, you may ask, what has it done for me? Has it gotten me a job? Installed ramps at the restaurant across the street from where I live? Made the power company send me my bills in braille? Forced the city’s Emergency Management Operation to create a system to notify and assist me in emergency disaster situations? Convinced people to stop treating me like a helpless, pitiful burden on society? No, it hasn’t done hardly any of that. So, why should I care about the ADA? Why should I bother to celebrate it? Whose fault is it? The government? The politicians? My parents? My neighbors? The courts? Well, none of the above. It’s your fault. Because you didn’t care. Ask yourself: What have I done to help the ADA live up to it promise? Did I vote in the last election? Did I tell those candidates running for office what my concerns were? What programs I wanted them to protect? What policies I wanted them to change? How many phone calls have I made, emails or letters have I sent, meetings have I attended, hours have I spent speaking up for my rights or those of other individuals with disabilities? How many elected officials have I approached to tell them about my personal concerns, about the injustices that I have experienced? We have a choice. We can focus on all that has not yet been accomplished by the ADA. We can lament the lack of affordable housing, the high cost of health care services, the continued high unemployment among persons with disabilities, and we can surrender ourselves to apathy, complacency and inaction. And who would blame us? It’s easy to give up, to listen to and believe the politicians when they say nothing can be done. It’s easy to tire of the struggle, the never-ending daily struggle of trying to deal with the accumulated barriers and injustices experienced by persons with disabilities. But still, we have a choice. It’s a hard choice. It is the choice to have the desire, the courage and the commitment to be willing to be advocates for change. Being advocates means believing that our efforts, that our vote, can make a difference. Things will get better for people with disabilities only when people with disabilities themselves are convinced that it is up to us to make them better. We can no longer afford to waste our time or energy in blaming society, public officials or our families or friends for the state of affairs we’re in. Nor does it serve any useful purpose to see ourselves as helpless victims of a cruel society. We are in charge of our destiny. We have in our hands the power for change. So, here we are just weeks away from another important election. What will we choose? The road of apathy, complacency and dependence? Or the road of advocacy and self-determination? It’s up to you, and it’s up to me. In the last midterm election in my county, just 12% of registered voters cast their vote. What about yours? I doubt that it was much higher. Will we let a small minority of voters decide our future? There are some 47 million people with disabilities of voting age in America. Our vote could make a difference. Your vote could make a difference. Will you vote? ***** It’s Holiday Auction Time! by Carla Ruschival Get ready to bid! Get ready to buy! Get ready to celebrate the holidays at the seventh annual ACB Radio Holiday Auction, coming to you live on Sunday, Dec. 2, beginning at 7 p.m. Eastern (6 p.m. Central, 4 p.m. Pacific) from Louisville, Ky. Lots of great items and fun; lots of ways to listen and a new way to bid, right from the comfort of your home. The 2018 Holiday Auction is packed with incredible items that are guaranteed to create bidding frenzies. There’s technology and holiday decorations, collectibles, music boxes and sparkling jewelry. Feast on holiday treats such as bourbon balls, a Kentucky Derby chocolate nut pie, popcorn, fudge, cookies and breads; there’s even a special Wisconsin cheese package, perfect for your holiday entertaining. Santa will visit when you hang handcrafted stockings for yourself and your doggie or kitty, and a matching handcrafted gingerbread boy and girl will make everything special. Follow the Holiday Auction link from www.acb.org for the most up-to-date auction details. The auction preview page containing item descriptions and photos will be posted on the website by Nov. 20. Items will be listed on the preview page in bidding order; more than one item will be up for bid at the same time. Item descriptions and bidding rules will also be read on air during the auction. Before you can bid on an item, you must register as a bidder. Auction pre-registration opens Nov. 20 and closes Nov. 30. Get ahead of the competition; call 1-877-630-7190 or email auction@acb.org and provide your name, phone number, email, and the state where you live. Registration will re-open one hour before the auction begins (6 p.m. Eastern, 3 p.m. Pacific). And now for the big announcement! Michael McCarty and the Radio Storm will host the 2018 Holiday Auction on Zoom Cloud. When registered bidders call the Zoom number to bid, they will be able to stay on the line and place bids throughout the evening, without the need to call over and over again. No busy signals! No waiting for your call to be answered! Bidding in real time! More information coming in November on the ACB website, ACB email lists, and ACB Radio. Listen to the auction on www.acbradio.org, through the ACB Link iPhone app, by phone at (712) 775-4808, on the TuneIn app, or on your Amazon Alexa device by saying “Alexa, play ACB Radio Mainstream on TuneIn.” Questions? Contact Carla Ruschival at (502) 897-1472 or email carla40206@gmail.com, or Brian Charlson at (617) 775-2541 or briancharlson@comcast.net. ***** Benefits of Audio Description in Education Contest The American Council of the Blind’s Audio Description Project (ACB-ADP) and the Described and Captioned Media Program (DCMP) are co-sponsoring an exciting opportunity for blind and visually impaired young people, in four categories from ages 7 to 21: the Benefits of Audio Description In Education (BADIE) contest. Kids love movies! Multimedia experiences are integral to public, private, and special education curriculum. Audio description provides access to all the visual images of the films and videos that sighted young people enjoy. Students choose an audio-described film or video from the more than 6,000 titles available through DCMP — visit www.dcmp.org. Or a young person who is blind can borrow an audio-described video or film from a library. Dozens of audio-described films videos are available for purchase through the ACB-ADP’s website at www.acb.org/adp/dvds.html. Reviews can be submitted in writing, in braille or via an audio recording. Register for the contest at http://listeningislearning.org/badie.html. Entries can also be submitted via email or postal mail (submissions from outside the United States are fine) to: ACB-DCMP Benefits of Audio Description In Education 1703 N. Beauregard St., Suite 420 Alexandria, VA 22311 Email: jsnyder@acb.org Phone: (202) 467-5083 ** Deadline For Entries: Monday, December 3, 2018 Contest winners in each category will be chosen by January of 2019, and the grand prize winner will receive an iPad Mini! Each first-place winner will receive a $100 iTunes gift card. Second-place winners will receive a $50 iTunes gift card, and third-place winners will receive a $25 iTunes gift card. Each supporting teacher who has a first-place winning student will be awarded a $100 Amazon gift card. ***** My Experience at the 2018 Conference as a Leadership Fellow by Darian Slayton Fleming When I applied for the ACB/JPMorgan Chase Leadership Fellow Award, I wondered if I would even be chosen because I have been a member of the American Council of the Blind for many years. I decided to give it a try. I work hard in Oregon, I still want to make a difference, and I can always learn new things. I wanted to glean tips for working with difficult people, improve Oregon’s teamwork abilities, and to help grow membership in my state. Since my husband died in 2016, I wanted to create a feeling of belonging for myself in the organization. I was happily surprised when I learned I would be one of the five Leadership Fellows. I attended all of the general sessions and enjoyed following the news about resolutions that had been brought to the assembly. These resolutions create a road map for ACB as we work with companies and services to make improvements in policies that make life more livable for people who are blind. The best news was learning that the Marrakesh Treaty was finally passed. This treaty makes it possible for people who are blind, all over the world, to gain access to all publications in the format of their choice. Publishers are being educated about the universal need for access to print materials and how they can be part of the literacy solution. I attended several leadership-specific events, including Grassroots Advocacy Boot Camp, where we talked about clarifying the need for which you wish to advocate, the values at the root of the need, and the threat that is posed if the need is not met. This will help identify the target audience of your specific message and the barriers that must be overcome through advocacy. This led me to sessions on how to promote the need for accessible prescription labeling in Oregon. Without accessible prescription labels, preventable accidents will continue to happen. Case in point: my husband met a man at the Palo Alto Blindness Rehabilitation Center for Veterans who lost his vision overnight by overdosing on blood pressure medication. When my husband was on hospice, although he had a ScripTalk to identify his medications, the company insisted on ordering his medications from their own provider, effectively sending us backwards in time by eliminating our ability to independently identify his medications at the end of his life. I attended the session about Nevada’s success in becoming the first state to pass legislation requiring accessible prescription labeling. I signed up with En-Vision America to be an advocate for accessible prescription labeling and have received their demonstration kit. Back in Oregon, I am working with my state to get similar legislation passed. Preventable medication accidents should not be happening in this day of accessible prescription labels. I was also very encouraged by learning that Eric Bridges, and ACB, took an opportunity to educate the TV realm by not only consulting with the NCIS episode writer about how to portray blindness accurately, but actually encouraging the hiring of an actress who is blind. The star in question, Marilee Talkington, was present at our events, and she spoke about how she is working every day to educate the entertainment industry about the abilities of actors with disabilities. Sometimes, one person can make a big difference in creating opportunities for authentic portrayal of blindness. I cannot possibly cover all the benefits of attending an ACB conference in this writing. Whenever I attend I am struck by the energy that is created when you hear about and are part of successful visioning and advocacy. I made new friends among leaders and first-timers, and I truly felt like I was part of the bigger picture by hanging out with people who are making a difference. Whether you are a first-timer or repeat attender, I strongly encourage you to consider attending an ACB conference. It will make a difference in your life, and you may learn something that will help you make a difference to someone else. ***** Summary of 2018 Resolutions The following are brief summaries of the resolutions adopted by the ACB membership at the 2018 conference and convention held at the Union Station Hotel in July. One resolution was referred to ACB’s advocacy services committee. It is not included in this compilation. Please note that these summary statements are not the authoritative voice of the ACB membership; they are simply intended to capture the overall scope and intent of the membership as authoritatively embodied in the full text of each of the resolutions. You can find the full text of resolutions at www.acb.org/resolutions2018. Resolution 2018-01 directs ACB to strongly urge all developers of antivirus and anti-malware programs to ensure that their software is designed to be fully accessible to and usable by people who are blind or visually impaired. Resolution 2018-02 instructs members of ACB’s state affiliates to request their state to immediately take all necessary steps to ensure equal access to absentee and vote by mail balloting in every state. Resolution 2018-03 directs ACB to take all steps necessary to obtain the recognition that electronic polling books or voter verification systems should be accessible to persons who are blind or have low vision and for the adoption of a requirement that every jurisdiction must implement an accessible voter verification system. Resolution 2018-04 tells ACB to encourage all teachers of the visually impaired to pursue continuing education and/or professional development opportunities and training to keep abreast of the ever-changing body of knowledge and practices concerning neurological visual impairment in order to effectively meet the unique needs of children with CVI. It instructs ACB to urge the U.S. Congress, state legislatures, and state and local educational agencies to protect the integrity of assessments conducted by TVIs. It also urges Congress to enact the Cogswell Macy Act. Resolution 2018-05 directs ACB to review the 2018-2019 Common College Application for accessibility after its next release on Aug. 1, 2018 and, if the application remains inaccessible after that date, ACB shall use all appropriate resources and influence to pursue full accessibility of the Common College Application for the release scheduled for Aug. 1, 2019. Resolution 2018-06 congratulates The Lighthouse for the Blind, Inc., Seattle, Wash., on providing 100 years of successful and innovative job opportunities for people who are blind, visually impaired, deaf-blind, and who may have additional disabilities. Resolution 2018-08 directs ACB to advocate for the full accessibility of commercial and other advertising to ensure that on-screen information is communicated effectively to viewers with vision loss. Resolution 2018-09 expresses the belief that Publix must do significantly more to create a standard of service in stores that is consistently appropriate; expresses ACB’s deep disappointment with the disregard to online accessibility demonstrated by Publix both on its website and through apps; directs ACB to urge Publix to develop and implement policies and procedures that will result in the deployment of accessible prescription labels; and instructs ACB to continue to work with Publix but expect a significant and substantial improvement in their attitude and approach to online, in-store, and prescription label access. Resolution 2018-10 instructs the ACB national office to expand and further its relationships with U.S. air carriers, calling upon airlines to: ensure that development of any such policies is done in consultation with ACB, Guide Dog Users, Inc., and other service animal advocates to assure that the long-standing commitment to full and equal inclusion of passengers with guide dogs is not compromised; and that the airlines commit to implement ongoing training with airline personnel in order to assure that the letter of the law protecting the rights of passengers with service animals not be impeded. It also directs ACB to work with the U.S. Department of Transportation to ensure that that the rights of passengers with legitimate, well-trained service animals not be negatively impacted by any changes to the service animal definition and subsequent relevant policies. Resolution 2018-11 directs ACB to immediately call upon President Donald J. Trump to promptly deposit the Senate-approved Marrakesh Treaty with the World Intellectual Property Organization, and to urge the leadership and members of the U.S. House of Representatives to take up and pass S. 2559, the Marrakesh Treaty Implementation Act, so that the legislation can be transmitted as soon as possible to the White House for the President’s signature. Resolution 2018-12 congratulates RSVA on its 50th birthday and reaffirms ACB’s commitment to support the right of blind vendors to receive priority to bid on military dining facilities. Resolution 2018-13 directs ACB to encourage its state chapters to consider advocating for the establishment of a state legislative task force on paratransit services, and instructs the task force to identify and disseminate best practices on paratransit issues. Resolution 2018-14 instructs ACB to call upon the Department of Transportation to enforce laws and rules which prevent accidents from occurring and encourages local and state affiliates to work with transit districts to assure compliance with appropriate safety standards. Resolution 2018-15 directs ACB to work with the FCC to require all broadcast and non-broadcast networks providing video description to establish a clear point of contact to address issues of quality and standards for video description. Resolution 2018-16 instructs ACB, LUA and BRL to strongly urge NLS to consider producing electronic braille books in greater numbers than those produced in hard copy, and commends NLS for beginning to work on creating different elements of braille output using document flow. It also urges NLS to consider developing a format for electronic braille not tied to the specifications that apply to hard-copy braille books. Resolution 2018-17 directs ACB, and LUA, to ask the Information Access Committee to join Library Users of America in reaching out to standard-setting bodies of the American Library Association and other entities deemed appropriate to advocate that these standards include accessibility components. Resolution 2018-18 instructs ACB to strongly urge the FCC to exercise all appropriate authority to require the broadcast and non-broadcast networks to establish and/or join an automated digital listing of all available audio-described programming, and directs that the FCC monitor such listings on an ongoing basis for quality assurance and to ensure that such listings provide consumers of audio-described programming with a level of service equal to that provided today to consumers of closed-captioned television. Resolution 2018-19 reiterates ACB’s ongoing assertion that an experience that is carefully and effectively described includes more information than can possibly be provided by an in-person guide, and directs ACB to urge the White House to take steps to reinstate the described tour as soon as possible. Resolution 2018-20 directs ACB to continue its advocacy in support of net neutrality. Resolution 2018-21 thanks the management and staff of the Union Station Hotel. Resolution 2018-22 thanks this year’s convention host committee and the women and men of the Missouri Council of the Blind. Resolution 2018-23 thanks all the convention volunteers. ***** The Pitfalls of Being a Caregiver by Larry P. Johnson Reprinted from “The San Antonio Express-News,” Jan. 6, 2018. (Editor’s Note: Larry P. Johnson is an author and motivational speaker. You may contact him at larjo1@prodigy.net, or visit his website, www.mexicobytouch.com.) Becoming a caregiver for a loved one changes your relationship and your life. In the beginning, you are filled with compassion, concern and determination to do everything you can to help. You even welcome the opportunity to show just how much you love that person. If it is a spouse or parent who is going blind, you dedicate yourself to being their eyes. You take over the driving, the cooking, the paying of bills, and you’re happy to do these things, because you love them. Gradually, you take on more of the household responsibilities. Your loved one, in turn, becomes frustrated, angry and feels helpless. Perhaps they settle into idleness and depression and don’t want to go anywhere or do anything. Or perhaps they become bossy and demand that you do everything for them — take them shopping, to medical appointments, read their mail, and look up information for them. Their demands become intrusions on your time. You’re afraid to leave them alone. You stop going places you used to go. No more volunteering at church. No more afternoons playing bridge, golf or going bowling. You are handcuffed to their needs. To make it easier for them, and you, you take charge. You make more of their decisions for them. You decide what they should wear, when and where they go out, even what they eat. You become their boss. What in the beginning was an eager, loving commitment has now become a strained relationship, a 24-hour obligation sapping your energy and eroding your good humor. Soon you find resentment and regret creeping into your consciousness. You sense the person you knew is not the person your loved one has become. You’re angry and upset that they have contracted this disease and at the doctors for not being able to cure it. What’s more, you feel guilty over your resentment. The relationship has become dangerously negative. I know of more than one case where loss of vision in a spouse has resulted in divorce, while with others, the relationship has become so tense and unpleasant, separation might be a happier outcome. So what can you do to preserve a loving relationship when one of your parents or your spouse experiences a serious disability such as going blind? First, recognize that as a caregiver you can help them most by not trying to do everything for them. You can encourage them to do things for themselves, to be as independent as possible. With the help of a professional orientation and mobility specialist, they can learn to get around outdoors on their own, how to safely do things such as cook and clean, read their own mail, take their medicine on time, etc. A visually impaired spouse or parent can be more independent than you realize. Vision rehabilitation programs, specialized adaptive aids and appliances and independent skills training are offered by both state agencies and Lighthouses for the Blind. It is true that vision loss can be devastatingly traumatic to a person’s ability to be independent and to participate in ordinary activities, but it is also true that “there is, for sure, life after loss of sight.” And that’s how I see it. ***** November: A Time to Give Thanks by Sharon Lovering When we think of November, most people think about Thanksgiving, family gatherings, and the fabulous meals featuring turkey and all the trimmings. But did you know November is also Alzheimer’s Awareness Month? President Ronald Reagan designated November as Alzheimer’s Awareness Month in 1983. Little did I know then the impact it would have on my family. The Alzheimer’s Association website states that 5.7 million Americans are currently living with Alzheimer’s. Every 65 seconds, someone in the United States hears a doctor say the words, “You have Alzheimer’s disease.” For my family, that day was in October 2006. But we had suspected it for several years before his diagnosis. ** Symptoms of Alzheimer’s Disease One of the first things we noticed about Dad was he had lost his sense of smell. He also forgot how to use small appliances he’d been using for years. He ruined a few coffee makers because he couldn’t remember where to put the water, where to put the coffee, and where to place the coffee pot. Or he’d forget to turn it off and burn the pot. He had trouble concentrating, and on occasion would forget to pay the bills. Then he started having trouble balancing the checkbook. Sometimes he’d forget birthdays, anniversaries, or whether it was Valentine’s Day, Mother’s Day, or Christmas. When he either remembered or checked the family calendar, he’d panic about not having gotten the person a gift, a card, flowers, etc. (Sometimes he’d forget he’d gotten a gift and where he’d put it.) We also noticed he had difficulty judging distances and determining color or contrast, which created problems for driving. He saw white as yellow, pink as orange — still does — and his ability to judge distances varies daily. Dad would also ask a question, then a few minutes later, ask it again, sometimes on seemingly endless, hours-long loops. He had trouble following conversation; sometimes he would give up on it altogether, or stop in the middle and have no idea what he’d said before. More often than not, he ended up telling the same story multiple times. He also struggled with finding the right word for things. Eventually he would just point at what he wanted; if he said anything, it was usually “I want … that” as he pointed at a pot of green beans. He would get frustrated when we couldn’t figure out what he wanted. He misplaced things and couldn’t remember where he’d put them. We once found his keys in the refrigerator. Other common symptoms include poor judgment, such as giving large amounts of money to charities, or paying less attention to grooming and personal hygiene. This wasn’t the case at first for Dad, but as the disease has progressed, getting him into the shower has been a real battle. Some days, getting him out of bed is more challenging than waking a teenager! ** The Toll of Alzheimer’s Disease Moderate Alzheimer’s is usually the longest stage; it can last for years. Symptoms may include: • Forgetfulness of events or about one’s own personal history; • Feeling moody or withdrawn, especially in socially or mentally challenging situations; • Being unable to recall their own address or telephone number or the high school or college from which they graduated; • Confusion about where they are or what day it is; • The need for help choosing proper clothing for the season or the occasion; • Trouble controlling bladder and bowels in some individuals; • Changes in sleep patterns, such as sleeping during the day and becoming restless at night; • An increased risk of wandering and becoming lost; and • Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding. One time during this stage, we dropped Dad off at the eye doctor to pick up his new glasses. He got confused on how to get home from the doctor’s office, went the wrong way, and ended up near the entrance ramp to I-66. Luckily, our chiropractor spotted him, recognized him, and gave him a ride home. We never let him go anywhere alone after that incident. We took the car keys away, too. He has withdrawn from activities he used to enjoy, like attending church and socializing with friends. He is most comfortable sticking close to home, going out for lunch, and listening to me play the piano. Sometimes he’ll sit and watch the Redskins or the Giants play football, but usually, it isn’t long before he’s dozing in his easy chair. Dad is now in the final stage of this disease. His ability to carry on a conversation is, for all intents and purposes, gone. He still enjoys listening to me play the piano. Sometimes he sings along when I play a familiar hymn. He shuffles along very slowly; Alzheimer’s has affected his balance, but he refuses to use the walker. He repeats himself frequently, but can’t tell us when he’s in pain. He can’t remember how old he is, what day it is, or when his birthday is. He’s as likely to shave off some of his hair as he is to trim his five o’clock shadow. He spends a lot of time sleeping. This Thanksgiving, my family and I will be thankful for the time we’ve had with him, and for whatever time we have left together. Has this Alzheimer’s journey been easy? No. Though we read books about the subject, and Mom took some classes, nothing truly prepared us for the suspiciousness, sneakiness, or any of the other personality and behavior changes we’ve experienced with Dad. None of the literature warned us about some of the socially unacceptable repetitive behaviors those with Alzheimer’s sometimes develop. Will it get easier? No. Dad needs help with even the simplest activities — making breakfast, dressing, shaving — and every day it seems he’s forgotten how to do something else. For more information on Alzheimer’s disease, visit www.alz.org, or call 1-800-272-3900. ***** A Gift – For Your Favorite Affiliate by Kathy Brockman By the time you read this, we’ll probably be thinking of the holiday season. This means gifts for our families and friends — but what about an ACB affiliate? The Monthly Monetary Support (MMS) program provides an option to designate part of your monthly contribution to an affiliate of your choice. Every quarter, donations from enrolled members are mailed to affiliates, which provides an easy fund-raiser. Money can automatically be deducted from a checking account or contributed through a charge card. A minimum of $10 per month is needed to become a part of MMS. The amount can be divided to share with an ACB affiliate, but 50% of the monthly contribution is retained by ACB. Yes, you can set up more than one MMS account to share donations with more than one affiliate. You get to choose the payment date: the 8th or the 22nd of each month. Be sure to update ACB if your checking account or credit card information changes. Forms can be obtained online, by calling the ACB office, or by visiting the committee’s table at ACB’s annual conference. Recently, two winners were selected for the 2018 giveaways. Congratulations to Bercy Joseph, winner of the Fire TV, and Kevin Maynus, winner of the Echo Dot! In closing, we wish to welcome Michael Garrett and Kim Hebert as new MMS Committee members. They join committee chair Mike Godino, Jean Mann, Dan Spoone, George Holliday, Allan Peterson and Kathy Brockman. Dan Dillon also attends in his role as chair of the resource development committee. Thank you to everyone who participated in the MMS program this year; it is appreciated. We encourage you to join and make an ongoing gift to your favorite affiliate in 2019! ***** Get Connected with ACB Next Generation There is a new place in ACB for members under 40. ACB Next Generation has hosted two successful conference calls with around 35 participants per call. By the time you read this article, we will have hosted a third call. Topics discussed on our calls include our goals and expectations for the organization, how we plan to stay in contact with everyone, and our plans for the 2019 convention in Rochester. We invite all members under the age of 40 to join us, and we welcome your support if you no longer fit into this age group. We meet on the second Monday of each month at 8:30 p.m. Eastern time, 5:30 p.m. Pacific. Dial (669) 900-6833 and enter code 3572595193 followed by the pound key. Or join the call through the Zoom Cloud app, downloadable from the Apple App Store or Google Play Store. Subscribe to our email list by sending a blank email to ACBNextGeneration+subscribe@groups.io. For more information, contact Amanda Selm at (502) 750-1774 or by email at alsmoot87@gmail.com. — Amanda Selm ***** Affiliate News ** Want to Help ACB Diabetics in Action? I hope that you all have had a fabulous summer and are ready for fall. Would you like to help make a difference in ACB and ACB Diabetics in Action? The MMS Program is just one way you can do that. ACB’s Monthly Monetary Support (MMS) Program gives you a way to support the American Council of the Blind. You determine the amount you want to give, where you would like the deduction to be taken from, and whether you would like the donation to be made on the 8th or 22nd of the month. The minimum donation is $10. You also can choose whether you’d like to have all funds go to the national organization or give up to 50% of your donation to an affiliate of your choice. To fill out the form online, visit http://acb.org/mms-form. If you need a paper copy, call ACB’s Minnesota office at (612) 332-3242. ** Join the Family for 2019! Blindness is a part of almost every family, so we hope you will join ACB Families or renew your membership for 2019. • We provide information, peer support and friendship for anyone whose family includes blindness or low vision. • We hold board and membership calls featuring presentations on everything from personal finance to gift-giving, and we hold peer support calls where participants can ask questions or share information on just about anything blindness- or family-related. We hold board and membership calls on second Sundays and peer support calls on fourth Sundays. All calls begin at 9 p.m. Eastern/6 p.m. Pacific. Join by dialing (712) 432-3900, passcode 796096#. • At each year’s ACB conference, we hold our annual business meeting and breakfast as well as other family-friendly activities. Can you say Bingo? • We sponsor a Facebook page and an email list where members can learn and share with each other. To join, or to renew your membership, send an email to carla40206@gmail.com. Include your name, mailing address, date of birth, visual status, and preferred format for “The ACB Braille Forum.” To pay by credit or debit card, call (502) 897-1472. You may pay online by going to www.paypal.com and paying $8 to families.acb@gmail.com. To pay by mail, send a note with the information listed above and a check or money order for $8, payable to ACB Families, to: ACB Families, 148 Vernon Ave., Louisville, KY 40206. If you join or renew your membership by Nov. 20, you will be entered into a drawing for one of two $50 gift cards. And if you join us for our Nov. 25 peer support call, you’ll be entered into a separate drawing for an additional $25. Now that’s how to get a jump on your holiday spending! ** Low Vision Scholarships from CCLVI Low-vision students have a unique opportunity to receive financial assistance for full-time college studies through the Council of Citizens with Low Vision International (CCLVI) Scheigert scholarship program. Three eligible applicants — an incoming freshman, an undergraduate and a graduate student — will each be awarded a $3,000 scholarship. The application period opens Jan. 1, 2019 and closes at 11:59 p.m. Eastern on March 15. For a description of the program, guidelines, reimbursement policy and low vision certification requirements, go to www.cclvi.org and click on Scheigert Scholarship. If you have questions, call 1-844-460-0625. ** South Dakota Association of the Blind 2018 Convention Highlights The South Dakota Association of the Blind’s 2018 convention was held Sept. 7-8 at the Country Inn & Suites in Sioux Falls. Dr. Pat Kelly was our keynote speaker. He told us about himself and talked about the struggles he has gone through in his life. Gaye Mattke, director of Services to the Blind and Visually Impaired, held a public forum, along with staffers Dawn Backer, Sandy Neyhart, Raymond Tracy, and Ronda Williams. Connie Sullivan from the state library gave an update on library services. On Saturday, we started the day with Laughing Yoga, led by Dan and Jill Johnson from Joyful Living. Tevan Fischbach updated us on the plans for the new school in Aberdeen. Shelly Pfaff then led us into a discussion of how we have integrated ourselves into the sighted world. We also heard a discussion on transportation, led by Shelly Pfaff, with panelists Doug Puetz, Brenda Schweitzer, and Sam Trebilcock. Our luncheon/banquet featured entertainment by the Sweet Adelines-Sound Cascade Chorus, including our own Lerae Olesen. Koni Sims received the Gus Zachte Memorial Award for her many years of dedicated service to the blind and visually impaired of South Dakota. Gaye Mattke told stories about the SDAB traveling bear. Eric Rippentrop then auctioned off the bear to the highest bidder — Nick Pavel. SDAB’s new officers are: president, Koni Sims; first vice president, Virginia Miller; second vice president, Eric Rippentrop; secretary, Lerae Olesen; treasurer, Lisa Rippentrop. Doug Puetz and Tevan Fischbach were re-elected to the board for three-year terms. Jackie Shepherd was elected to finish out two years of Eric’s term. Catherine Greseth was elected to finish out the last year of Koni’s term on the board. For more information, and photos, visit our Facebook page, https://www.facebook.com/sdassociationoftheblind/. ***** What’s in the Mini Mall? The holidays are almost here, and the ACB Mini Mall is ready with gifts and stocking stuffers for everyone on your list. We’ve got ACB Silk Touch polo shirts and fleece jackets; Gateway to Success keepsake boxes, magnets, shot glasses and travel mugs; a new deluxe ACB computer backpack and a computer accessory bag; and roomy totes embroidered with the ACB logo. The techies among us will love the laser-engraved light-up power banks, the 4-port USB folding wall chargers, and the USB quick chargers. The new ACB Hawaiian shirt luggage tag, a Mini Mall gift card, and our mirror and snake cube puzzles make great stocking stuffers. The Mini Mall is just stuffed with great items — far too many to name here. Explore the Mini Mall catalog by phone on Audio Now; dial (605) 475-8154 and choose the Mini Mall from the main menu. Braille and large print catalogs are available upon request by calling 1-877-630-7190 or emailing mall@acb.org. Download a digital catalog by visiting http://mall.acb.org. Shop at the Mini Mall and support ACB’s good work. Thanks for making this a great holiday season at ACB. — Carla Ruschival ***** Here and There edited by Sharon Strzalkowski The announcement of products and services in this column does not represent an endorsement by the American Council of the Blind, its officers, or staff. Listings are free of charge for the benefit of our readers. “The ACB Braille Forum” cannot be held responsible for the reliability of the products and services mentioned. To submit items for this column, send a message to slovering@acb.org, or phone the national office at 1-800-424-8666, and leave a message in Sharon Lovering’s mailbox. Information must be received at least two months ahead of publication date. ** Bosma Launches New Program Bosma Enterprises recently launched an innovative training program to prepare people who are blind or visually impaired for high-demand careers as sales force administrators. Called BosmaForce, the 18-week course is offered entirely online and available to anyone throughout the country. The pilot class includes seven students from Indiana and Illinois, all of whom are blind or visually impaired. The group will utilize Trailhead, Salesforce’s interactive, guided and gamified learning platform, to gain knowledge on the adaptive technologies and workarounds within the Salesforce architecture. After completing the certification exam, Bosma Enterprises will work to place the graduates into two-month internships with local businesses. For more information, visit www.bosma.org. ** News from Aira Aira Messages, a new product feature, is now available as a free update to the Aira app and experience. You can find it now in the updates section of the iOS App Store, and coming soon to the Google Play Store. Aira Messages enables explorers to communicate with agents via typing while in a session (similar to texting). For more information, visit https://tinyurl.com/y97rz3mt. In furtherance of Aira’s partnership with ACB, both groups have signed an agreement establishing that all ACB members be granted access, as Aira guests, to Aira’s free Employment Program. Aira will provide a code for ACB members to redeem for five shopping days using the service. For more information, contact Customer Care at 1-800-835-1934 or email support@aira.io. ***** ACB Officers ** President Kim Charlson (3rd term, 2019) 57 Grandview Ave. Watertown, MA 02472 ** First Vice President Dan Spoone (1st term, 2019) 3924 Lake Mirage Blvd. Orlando, FL 32817-1554 ** Second Vice President John McCann (2nd term, 2019) 8761 E. Placita Bolivar Tucson, AZ 85715-5650 ** Secretary Ray Campbell (3rd term, 2019) 460 Raintree Ct. #3K Glen Ellyn, IL 60137 ** Treasurer David Trott (1st term, 2019) 1018 East St. S. Talladega, AL 35160 ** Immediate Past President Mitch Pomerantz 1115 Cordova St. #402 Pasadena, CA 91106 ** ACB Board of Directors Jeff Bishop, Kirkland, WA (1st term, 2020) Denise Colley, Lacey, WA (1st term, 2020) Sara Conrad, Madison, WI (2nd term, 2020) Dan Dillon, Hermitage, TN (1st term, 2020) Katie Frederick, Worthington, OH (2nd term, 2022) James Kracht, Miami, FL (1st term, 2022) Doug Powell, Falls Church, VA (1st term, 2020) Patrick Sheehan, Silver Spring, MD (2nd term, 2022) Michael Talley, Hueytown, AL (1st term, 2022) Jeff Thom, Sacramento, CA (1st term, 2022) Ex Officio: Debbie Lewis, Seattle, WA ** ACB Board of Publications Ron Brooks, Chair, Phoenix, AZ (3rd term, 2019) Paul Edwards, Miami, FL (2nd term, 2020) Susan Glass, Saratoga, CA (1st term, 2019) Debbie Lewis, Seattle, WA (2nd term, 2020) Penny Reeder, Montgomery Village, MD (1st term, 2020) Ex Officios: Katie Frederick, Worthington, OH Bob Hachey, Waltham, MA Berl Colley, Lacey, WA Carla Ruschival, Louisville, KY ***** Accessing Your ACB Braille and E-Forums The ACB E-Forum may be accessed by email, on the ACB web site, via download from the web page (in Word, plain text, or braille-ready file), or by phone at (605) 475-8154. To subscribe to the email version, visit the ACB e-mail lists page at www.acb.org. The ACB Braille Forum is available by mail in braille, large print, digital cartridge, and via email. It is also available to read or download from ACB’s web page, and by phone, (605) 475-8154. Subscribe to the podcast versions from your 2nd generation Victor Reader Stream or from http://www.acb.org/bf/.