THE BLIND CALIFORNIAN Quarterly Magazine of the CALIFORNIA COUNCIL OF THE BLIND Fall 2018 Volume 62, No. 4 Published in Braille, Large Print, audio CD, Email (bc-subscribe@ccbnet.org), and Online in readable and downloadable text and audio media. Judy Wilkinson, President 1550 Bancroft Avenue #113, San Leandro, CA 94577-5264 Cell: 510-388-5079 president@ccbnet.org Executive Office California Council of the Blind 2143 Hurley Way Suite 250, Sacramento, CA 95825 916-441-2100 voice; 916-441-2188 fax Email: ccotb@ccbnet.org Website: www.ccbnet.org Jeff Thom, Director Governmental Affairs Committee 800-221-6359 toll free; 916-995-3967 cell governmentalaffairs@ccbnet.org Webmaster webmaster@ccbnet.org Mike Keithley, Editor 191 East El Camino Real #150 Mountain View, CA 94040 650-386-6286 editor@ccbnet.org Susan Glass, Associate Editor 408-257-1034 editor@ccbnet.org The CALIFORNIA CONNECTION is a weekly news service provided: By phone: in English and Spanish at 800-221-6359 Monday through Friday after 5 PM and all day on weekends and holidays. By email subscription: send a blank message to connection-subscribe@ccbnet.org; Or on the web at www.ccbnet.org. Submissions for the California Connection can be emailed to ca.connection@ccbnet.org. Non-members are requested and members are invited to pay a yearly subscription fee of $10 toward the production of THE BLIND CALIFORNIAN. In accepting material for THE BLIND CALIFORNIAN, priority will be given to articles concerning the activities and policies of the California Council of the Blind and to the experiences and concerns of blind persons. Recommended length is 1800 words. The deadline to submit material for the Winter 2019 issue of THE BLIND CALIFORNIAN is noon, November 15, 2018. Shop at Amazon, donate to CCB. Access https://smile.amazon.com/, log into your account and select California Council of the Blind as your charity. Please send all address changes to the Executive Office. Table of Contents Editor's Page, Mike Keithley Staying Relentlessly Positive, Judy Wilkinson Governmental Affairs Report, Jeff Thom Half the Person, Twice the Life, Maile George Remarks at Ken Metz's Memorial Service, Judy Wilkinson Good News from Kaiser Permanente in San Jose, Beverly Clifford My Love Letter to Orientation and Mobility, By Jacob Lesner-Buxton Robo-Brailler Crashes the Braille Challenge, various kids Guide Dog Users, Inc. Publishes Handbook to Help People Who Are Blind Decide if the Guide Dog Lifestyle is Right for Them Highlights of the 2018 Biennial NLS National Conference, Karen Keninger CCB Board Minutes Summaries, Ardis Bazyn CCB Officers and Directors Editor's Page By Mike Keithley Welcome to the fall issue of The Blind Californian. I'm sure you lived an adventurous summer, with trips to and from the ACB conference and convention with its myriad events, and interesting happenings at home. So now comes the BC with more things to share. Will President Wilkinson make it through the chaos of the moment? Find out here! And we have a great story of how a member of the Contra Costa chapter successfully lost weight, plus the account of Robo-Brailler crashing the Braille Challenge at the Washington State school. And as promised, we have more memorials to Ken Metz. Enjoy! Staying Relentlessly Positive By Judy Wilkinson Our BC editor had been gently reminding me for over a week to get my article to him, but this was one of those times when I felt beleaguered and believed there was nothing I could write about that I could speak about publicly. As it happened, this morning I was speaking with Louis Fawcett, our partner in CCB's major gifts campaign, who pointed out to me that donors can sense negativity, strife, and discord; he warned me we would hear many "no's," and in that light, the key is to remain "relentlessly positive." For me that remark came at a pivotal moment. No sooner had he and I hung up and I was taking a breath in preparation for a call on a legal matter CCB is pursuing, when Paul Shane phoned to alert me that our office had been robbed last night. Luckily in Paul's capable hands (thank goodness for his law enforcement background), we are dealing with the aftermath literally as I write this. Also thank goodness for insurance. But the day had already been going badly! At around 6 AM our time, I learned that in preparing our mailing to some 2,250 donors in the Sacramento area, we discovered the address hadn't been changed on our license to use special postal services for nonprofits; an honest mistake since after all, we have the license and never realized the address problem. Hopefully we can resolve this matter in time to include a return card in our mailer, though Louis assures me most people respond these days via email or phone. Moving on to other hurdles, at the end of July, Peter Pardini and I went to the office to meet our incoming treasurer Lisa Thomas so we could manage bank signatures. Whenever such a major transition occurs, there are challenges: Lisa has put in many long hours and will put in many more, bringing our financial records into a manageable state. This has necessitated hours of my time as well. The board will be considering some of her preliminary findings and recommendations, and we will be looking at some hard choices over the next few weeks. The board will meet in several executive sessions, but rest assured, we will give plenty of notice about public meetings where we will discuss possible actions. It's hard to believe that Paul Shane has been our CEO for two years, and the board is currently discussing contract matters, which also has its stressful components. Oh and did I mention that our website was down this week because we forgot when replacing a compromised credit card to change automatic payments? And speaking of that card, let me mention the hours I spent dealing with B of A personnel on this problem. I understand that in most religions, belief in the positive is axiomatic, but speaking personally, I need to dig deep to manufacture it! Well remember that CCB advocacy call I mentioned? We have medical recipients who need materials in accessible formats! In his article elsewhere in this issue, Jeff reminds us of goals accomplished and challenges for next year concerning our legislative agenda. CCB has milestones to celebrate in our Case For Support| — Enactment of the white Cane law in 1935. — 1980's CCB sues BART to get detectable warning strips on platforms. — 1990's to present: Structured negotiations in a number of areas ranging from accessible banking services, point-of-sale machines, pharmacy chains for prescription information, and the list goes on. We have four projects we are asking donors to fund: — Senior Solutions: addresses the unique needs of the blind and low vision aging population. — Achieving Access: tackles the needs that blind and low vision people face to navigate the 21st century world at home and in their communities through transportation and technology. — Equality Without Compromise Advocacy: is dedicated to making long term sustainable positive changes in the lives of people who are blind and low vision. — New Beginnings: for those facing change in their vision status or life circumstances. The significance of the above milestones and the number who will benefit from our four proposed projects and our belief that they can be accomplished create the incentive which sustains all of us. Which brings me to the most monumental milestone of all: next year we will be celebrating CCB's 85th anniversary, including special activities at our upcoming conference and convention, whose theme will be "CCB: Survive And Thrive at 85!" What a testament to staying relentlessly positive. Governmental Affairs Report By Jeff Thom A busy legislative session will soon be coming to an end, but an even busier one for CCB will begin very soon. By the time you read this, final action should have been taken on AB1865, our bill to tighten some provisions relating to attacks by dogs against service animals and the liability of the owners of those dogs for the attacks. It is almost certain that the bill will reach the Governor's desk, as it did two years ago, and we hope that the deletion of some minor provisions will prevent the Governor from refusing to sign the bill, as he did on that occasion. This year marked a major victory for SSI recipients when the Legislature finally ended the policy that made California the only state in which, for a very small amount of additional SSI, those on SSI could not receive food stamps. Starting in 2019, most recipients will, by receiving CalFresh benefits, have a significant increase in their overall monthly benefit levels. The receipt of food stamps will lessen the pressure on recipients to choose between food and other costs of daily living. The 2019-2020 legislative sessions will see major changes for CCB and will be a very busy one for all of us. First, beginning in the fall, the Governmental Affairs Committee will have new co-chairs, Ardis Bazyn and Alice McGrath. The committee will certainly flourish under their capable leadership. Secondly, I would like to announce that CCB is beginning the process of having a new advocate in Sacramento. For one year, I will be mentoring Ms. Sylvia Reese, a member of the Capitol Chapter and after that period, she will take over our advocacy duties. Sylvia has attended the ACB Legislative Seminar in Washington D.C. and has testified several times in Sacramento. You will come to know Sylvia more and more during the course of the next year and I am sure you will be just as impressed as I am with her ability. Now, I would like to summarize the issues on which we will work during the upcoming state legislative session. Thanks to the efforts of so many of you, we had success in obtaining a $500,000 allocation of funding for the Braille Institute Library (BIL). We have been in discussions with both libraries and will be working on a far more comprehensive push for funding next year for both the BIL and the Braille and Talking Book Library (BTBL). We will focus on outreach to unserved consumers and other areas in which more staffing is necessary. Secondly, in accordance with a resolution adopted at the 2018 convention, we will be seeking adoption of a resolution for a state taskforce to compile best practices on an array of issues surrounding paratransit services. For a variety of reasons, paratransit policy is a local matter, but we can certainly focus attention on the problems facing their services and provide ideas for change. Another area in which we need to do far more concerns services for seniors with vision loss, both with respect to services specifically targeted to our population, and those generally used by all seniors. Toward this end, we would like to emulate Texas' approach by establishing a taskforce on Aging and Vision Loss. Such a taskforce could begin to address how better to serve our population and raise the awareness in the aging field of the specific needs that seniors with vision impairments have. With service reductions already occurring due to changes in funding priorities under the rehabilitation system, we need to work harder than ever on behalf of this population. Finally, we are working with the special education community on what we hope will be the first major piece of special education legislation concerning California students who are blind or have low vision in many years. We hope to introduce legislation that will contain two major components. The first element would be the addition of the expanded core curriculum (ECC) to state law. The ECC concerns areas including technology, socialization, orientation and mobility, braille, and others that are specific needs of our students. Secondly, we want to end the school district practice of placing restrictions on off-campus activities that often preclude the ability to provide orientation and mobility services. To say the least, this is a robust legislative agenda that will require work by all of you and collaboration with allies whenever possible. Moreover, success in the legislative arena is often slow in coming and requires perseverance and a capacity to absorb defeats along the way to the ultimate victory, as well as a willingness to accept compromise. However, we have always prided ourselves in overcoming obstacles to the improvement in the lives of persons who are blind or have low vision and all of these issues need to be addressed. So, fasten your seat belts and prepare to take off on a wild ride toward the finish line of success! Half the Person, Twice the Life! By Maile George, based on a dialog with Laurie Van Allen In late 2016, with our Guide Dogs snoozing at our feet, Laurie Van Allen and I chatted over lunch at a local diner known for its gigantic portions. It was during this conversation that Laurie told me she was considering weight loss surgery. I tried to be as supportive and enthusiastic as I possibly could, but I was also admittedly somewhat skeptical because Laurie had mentioned to me many times in the past that she couldn't remember a day in her life when she was not overweight. Still, at the age of 53, weighing in at 346 pounds, Laurie knew she needed to do something different to stop her steady weight gain. Please read on to get to know Laurie as she responds to my questions about her weight loss journey. M - What finally convinced you to go through with weight loss surgery? L - Mostly, it was my declining health! I was diagnosed with sleep apnea, Type II diabetes, high blood pressure, pinched nerves in my back, anemia, and had to get regular B12 shots. I was unsteady on my feet, found myself getting out of breath after just walking a short distance and suffered from severe cramps in my feet and calves, not to mention the inconvenience of having to shop at plus-size clothing stores, and the embarrassment of having to ask for seatbelt extenders on airplanes, and taking up extra space in cars and on public transportation. M - How did you choose your surgeon? L - My regular medical doctor referred me to a bariatric surgery specialist. I felt comfortable with her from the first moment I met her! She recommended what's known as gastric sleeve surgery. The purpose of this type of surgery is to decrease the size of the stomach, so it becomes physically impossible to overeat. M - Did Medicare pay for your procedure? L - Yes; most of it was covered by Medicare, including lab tests, GI tract tests, the surgery, the hospital stay, pain meds, and the follow-up visits. M - Were there any costs you didn't anticipate? L - Yes; there were a few. I had to pay for the mandatory psychological evaluation myself, and for the special food I needed for about six weeks post-surgery, which were, surprisingly delicious but expensive! I started with a liquid diet, and then I was able to move on to soft foods, all of which I ordered from www.bariatricchoice.com M - How did you manage all the paperwork that must have been involved? L - There were lots and lots of forms, and I don't think any of them were available in an accessible format. Fortunately, my attendant, who's now also a good friend, was willing to sort through the stacks and stacks of paperwork. She was a constant source of encouragement as we went through form after form after form! My pre-op nurse was also helpful with the legal forms I had to sign immediately before the surgery. M - How long was it after your surgery before you could eat regular food, walk, resume your daily activities, and start working Lego, your Guide Dog? L - After the surgery, I had to stay in the hospital for three days, and when they allowed me to go home, it took about three or four weeks before I could move around halfway normally. Then, after about four weeks, Lego finally came home. As far as the food, all I could eat at first was half a Popsicle, but then I gradually added more variety, starting with shakes, puddings, soups, and meal replacement and protein bars. It's still trial and error, as I add other foods like eggs, small amounts of chicken, fruit and cooked vegetables. M - How many pounds have you lost, and how much time has it taken? L - It's been a little over a year, and I now weigh 205; I'm down 141 pounds from my starting weight of 346! My goal weight is 170 to 180, which, according to my doctor, is about right for a woman of my height and build. M - What factors contributed to your success? L - I honestly would have been lost if it hadn't been for the ongoing support of my family and friends. The members of the Contra Costa CCB chapter really cheered me up and cheered me on! About a week after I got home, I was surprised when a box of the special soft food I needed was delivered! It was nice to know my friends from the Contra Costa chapter were thinking of me. In fact, the psychologist continually emphasized how critical support was to a person's success. (Note: Though Laurie never attended a support group, the psychologist told her about many in the area. If Laurie hadn't had such a strong support network of her own, she said she definitely would have taken advantage of the opportunity to go.) M - How will you know when to stop losing weight? L- My doctor assured me she'll tell me when it's time to start thinking about following a maintenance program; don't worry! I won't ever become anorexic! I like my food too much! M - In what way has your life changed since you had the surgery? L - In so many ways! I have no more sleep apnea, so I don't use my CPAP machine, I don't take the diabetes medication, Metformin, or the vitamin B12 shots and my dose of blood pressure medication has been cut in half! My iron levels are normal, I have more energy, and I don't get out of breath as easily! I also don't experience the painful foot and calf cramps I used to get when I was so much heavier. I'm also really happy that I can now shop at a variety of regular clothing and shoe stores! My balance and nerve pain from the pinched nerves in my L3 and L4 are still bad, but I'm hopeful that over time, as my body adjusts, and with water therapy and perhaps traction, I'll get some additional relief. M - What have you learned about yourself after going through this? L - I've learned that I don't need to use food as a crutch; I used to overeat when I was feeling sad, frustrated, depressed, or even when I was happy! I don't do that anymore! What hasn't changed is that I still like my sweets! I just have to watch the amount. A couple of spoons of ice cream, and I'm done! I remember when we used to go out; I'd eat a full meal, and then order a piece of apple pie for dessert. Now I go to the same restaurant and I order a piece of the sugar-free apple pie, eat a few bites and take the rest home. That leftover pie takes me another three days to eat, but I enjoy every single bite of it! M - What's the best part about having gone through the weight loss surgery? What's the worst? L - The worst part of it is that my mother isn't here to see me so happy and healthy! Also, while my stomach incisions were healing, I missed Lego terribly- he's my wonderful, devoted and silly Guide Dog! Oh, and one more thing: As I continue to lose, my clothes start to hang on me, so I have to replace my larger sized clothing with smaller sizes, which gets expensive. Fortunately, I have a great friend who's a flight attendant and a pretty snazzy dresser who comes over to help do what we call "closet purgings" and I've given away 17 bags of clothing! The best things far outweigh the worst! I just feel so much better about myself, both mentally and physically! In fact, people who haven't seen me for a while don't recognize me! I can honestly say that I'm now happier and healthier than I've been for a really long time. It's the best decision I've made in my whole life! M - Would you recommend weight loss surgery to others? L - Yes; I would recommend it to anyone sitting on the fence about doing it! M - What's next for you? L - One thing I haven't mentioned yet is that because I've lost so much weight, I have about ten to fifteen pounds of extra skin. I was recently evaluated by a plastic surgeon and I'm just waiting to hear if the skin removal procedure will be covered by Medicare. After that, who knows? I hope to join the workforce again, but even if I don't, I'm now looking forward to a healthy, long and happy life! Note: In August,2018, Medicare paid for Laurie to have seven pounds of excess skin removed from her lower abdomen. Laurie's recommended Resources: www.bariatricchoice.com Bariatric Surgery Diet Foods and Vitamins for a Gastric Bypass Diet; call 1-800-993-1143. From Amazon Digital Services: TLC's My 600-LB Life TLC's Skin Tight Remarks at Ken Metz's Memorial Service, July 28, 2018 By Judy Wilkinson The following remarks may not be the exact text of the streamed broadcast as what follows is an expanded version of the notes I used that day. Today, as its president, I am here representing the California Council of the Blind, and like all of us, to celebrate the life of our dear friend Ken. Let me extend thanks to Guide Dogs of America for hosting this event, and to ACBRadio for streaming it without charge; because of ACB radio, people are listening throughout the state, the country and even the world, because indeed Ken had friends everywhere. A couple of days ago I was tallying a board vote and could only come up with fourteen! Where was that fifteenth vote? And then suddenly: the gut-wrenching realization; Ken: elected CCB's second vice-president just nine short weeks before his death. Ken: so much bigger than life! With that infectious belly laugh; those phone messages complete with dogs and cats! The recently modified mission of the California Council of the Blind is to increase independence and equality for all Californians who are blind or low vision. In accomplishing this mission, there is a black hole in the CCB universe, a vacuum created by the absence of this gifted advocate; this joyous people person. Hours before his death. the CCB Board voted to induct Ken into its hall of fame. Pam assures us he knew and thanked us. This award is so richly deserved, and Pam will accept the official award in his honor at our convention in June 2019 celebrating CCB's 85th anniversary. Ken devoted over 45 years to the work of helping blind people. Yes, most of that time was with the Council, but Ken didn't have boundaries; we remember his love of radio and participation in local broadcasts to promote awareness of important issues, and his many years as an active Lions Club member. Ken didn't have time for in-fighting, backbiting, or organizational politics. For instance, there was a woman from Arizona who needed help getting to medical appointments in Southern California. Ken said, "Of course I'll meet her and go with her!" Can you imagine how many hours this act of kindness, repeated several times, took? There were people needing help with social security, with rehab claims; children needed someone to teach their parents about what they needed; there were guide dogs who needed protection! Statewide fundraising efforts needed Southern California involvement! Chapters needed to be founded! Chapters needed leadership! Chapters needed fun: how about another hotdog and some of Ken's famous spicy chili at his chapter's annual baseball-themed fundraiser? Other chapters needed bolstering: just a few months ago, Ken and Bob Acosta visited one of our revitalized outlying chapters. But no matter how much he was doing, he was ready and willing to do even more! "Hello Sweetheart! What do you need? How can I help?" "Ken, I need you to be the resource point person for CCB in Southern California; Ken I need you to visit your local legislator; Ken, I need you to chair the Awards Committee; Ken I need you!" By the way, just this past January, Ken spearheaded organizing a regional meeting of CCB chapters. All this in just the past few months. Perhaps no one but Pam knew how much Ken struggled to overcome health issues these past few years, all the while soldiering on with "the work". Let me tell you about the Woodland Hills convention banquet in 2015 where Ken was the master of ceremonies. Suffering terrible neuropathy as this lifelong braille reader struggled with his notes; knowing his long-time friend Obbie Schoeman had collapsed and been rushed to the hospital hours earlier. But did people in that audience or listening on ACBRadio know any of this? No! this valiant man made us laugh; kept things moving. And that says it all! Every time I get discouraged and whine thinking people are petty, that the struggle isn't worth it, that the path is too steep, I remember Ken and realize we can't disrespect all he stood for! We can't let him down! I hear, "Hi Sweetheart! What can I do? How can I help?" Good News from Kaiser Permanente in San Jose By Bev Clifford Before I begin this narrative, I want to pay tribute to the woman who started it all: the late Barbara Rhodes, long-time and treasured member of our Silicon Valley Council of the Blind chapter. Due to her tireless effort and New York chutzpah, Kaiser began offering Talking Pill Bottles to its patients in our area sometime in the early 2000's. We miss her, and our chapter has since created our Barbara Rhodes Technology Grant in her honor. I was one of the patients who benefited from her work, and her example inspired me to take action. I was also inspired by a company called EnVision America, which for several years had been struggling to convince Kaiser Permanente that their product, ScripTalk (a playback unit that audibly reads to a person all the information on their prescription labels) would be beneficial to its blind and visually impaired patients. Near the beginning of 2017, not long after Vic and I had signed up for the Kaiser Senior Advantage program, I determinedly began a phone campaign to encourage Kaiser to seriously consider ScripTalk--and that's making a long story short: there were many calls to many departments before finally, in April 2017, I reached someone who was willing to listen to and take notes on what I had to say. And whether because of their ongoing communication with EnVision America, or possibly spurred on by my insistent nagging, I received a call two months later informing me that my next prescriptions would arrive with a ScripTalk unit that would read the information that a mail-order pharmacist would record on a little label on the bottom of each prescription bottle or box. I was thrilled! And I made a special call to their Pharmacy Department that very day thanking Kaiser fervently for finally seeing the light. In January of 2018, I became a member of Kaiser San Jose's Member Patient Advisory Council (MPAC), which meets once a month to glean important input from and listen to the concerns of patients on any and all issues, whether trivial or serious, surrounding their Kaiser facility here, so that patients and Kaiser staff can work together to address them. During my intake interview, I made it clear that my major reason for joining this committee was to advocate for people with disabilities, particularly (of course) those of us who are blind and visually impaired, and that I was especially interested in speaking with pharmacy representatives. For although I was extremely grateful for Kaiser's adoption of ScripTalk, I knew they could do more. I was aware that EnVision America also offers braille labeling on prescription containers (a fact that would be vital to the deaf-blind community), plus they have developed an iPhone app called ScripView that enables VoiceOver to read a specific kind of label affixed to the little instruction booklet that comes with each prescription, therefore allowing visually impaired patients with large print capability to read the information on prescription containers as well. Just last month, when I received the agenda for our upcoming MPAC meeting, I saw that people from the Pharmacy would be attending. And fortunately for me, I was in a position to demonstrate not only the ScripTalk unit, but also the braille labeling and the iPhone app, reason being that before I returned to Kaiser I was under AETNA's medical insurance, and AETNA had agreed to implement all three of EnVision America's options, whereas at that time Kaiser hadn't agreed to any of them. When I was asked which option I wanted, I requested them all, so that when the time came I could show somebody at Kaiser how they all worked. And now, at last, that time had arrived. So I happily packed up my ScripTalk unit, an old AETNA prescription bottle with the braille label, the little instruction booklet to be used with the ScripView iPhone app (that I had just downloaded that morning), and off I went to the meeting. The other MPAC members and the assembled staff seemed impressed with the products--most of them had never heard about or seen them--and after the meeting, one of the pharmacists came to my table to get a better look at the bottle with the braille label. I was pleased with my demonstration except for the iPhone app, which had worked (although slowly) that morning, but which I couldn't guarantee would work properly at the meeting. But at least I was able to explin the concept, showing them the app, and then turning up the iPhone volume to the max so they could listen to how VoiceOver can read the prescription information from the history of the labels it had previously scanned. Then I went home and forgot about it all. That meeting was about two weeks ago. And just two days ago, I received a call from one of the Volunteer Coordinators we work with, who was delighted to spread the news that the Kaiser San Jose's mail-order pharmacy has just ordered the braille printer they need to emboss braille labels for prescription bottles, and that when I refill my next prescriptions, the bottles/boxes will have braille on them! And if they'll do this for me, that means that any other San Jose Kaiser patient who wants braille on their bottles can get it, too. Hallelujah! I'm not sure if every walk-in pharmacy will have a braille printer quite yet, and I have no idea whether Kaiser will implement the large-print option in the future, but this is a good start. Hooray for advocacy! My Love Letter to Orientation and Mobility By Jacob Lesner-Buxton Note: For those who don't know orientation and mobility, it's a class provided to many students who are blind or low vision. The class teaches one to use public transit, shop at a supermarket and find your way home from those places, among other skills needed to be independent. The class is being scaled back by some school districts in CA. To learn what you can do to help protect this class, please e-mail jakeoaktown@mail.com My name is Jacob Lesner-Buxton, and I am a person with Cerebral Palsy and low vision who works as a disability advocate in Santa Barbara. Beginning in pre-school, I was provided with weekly orientation and mobility (O&M) lessons by the Oakland Unified School District. The skills that my teachers taught me had more of an impact on my life than anything else I learned at school. In elementary school, I used to look forward to O and M lessons, because I got to go to Taco Bell and KFC, places my parents rarely took me. Through seeking junk food, I learned how to remember street directions, count money, and navigate obstacles on the sidewalk. Besides these skills, my O and M teachers taught me how to feel comfortable in public. During an O and M lesson in 4th grade, I encountered some noisy teenagers hanging out on the street. "Aren't you scared of walking here?", I asked my teacher. She explained to me that the reason I felt nervous was because I had developed stereotypes about certain people. Learning about prejudice at such a young age helped me to be more open to getting assistance from others. Through my O and M lessons, I learned how to ask for directions and assistance finding items in stores. Being a man who does not have any shame in asking for directions has made my life so much easier. My O and M skills helped me get out of many jams. For example, one weekend in high school, I was supposed to take the Amtrak home from a workshop. However, my cab driver left me at the Caltrain station, which was a different transit system than the one I had intended to use. In a few minutes, I was able to figure out a new way home, via Caltrain, taxi, and subway. I was also able to ask the conductor to borrow his cell phone to call my parents. I wouldn't have been able to get home that night if it wasn't for O and M teachers, and how they prepared me for different challenges. In high school, O and M teachers would often split their students into groups and have us plan trips to local restaurants. Each team would have to use a different mode of transit to get there such as cab, paratransit, the subway and the bus. These learning opportunities were possible because my school district let O and M teachers take students off campus after school. If it wasn't for programs like Oakland's, I wouldn't be working in Santa Barbara, or have gotten to travel to Russia, Canada, Japan, Mexico, and Cuba by myself. In short, my O and M teachers gave me the confidence that I needed to go out and make something of myself. Robo-Brailler Crashes the Braille Challenge By Edward, Tylor, Garrett, Damien, Bella, Klaira, Kyle, Zoe, Sandy, Kendra, with help from Ms. Hagood. [Here's creativity from a bunch of kids with a teacher's help.] Once there was a Braille Challenge event at Washington State School for the Visually Impaired and Deaf-Blind. Princess Leah came to entertain them with a light saber lesson in how to be Jedi, and Sophia came to juggle. Choir led a singing group. It was a very entertaining Braille Challenge. But there was one problem. An uninvited guest appeared to crash the event. While they were enjoying the break time show, something strange happened to Damien's brailler that was sitting alone on his desk. It started drumming and rumbling and it sprouted two hands out the sides and a pair of shoes to help it walk from underneath the table. Even stranger, it started to talk. It read out loud every brailled word that it created on its own. It seemed to have a life and a mind of its own. When Damien returned from the show, the brailler said, "What's up? Has the Force been with you?? Damien felt terrified, and he screamed to Ms. Jansen, "There's something strange going on with my brailler." When Ms. Jansen got there, the brailler had turned into its old-fashioned self--no arms, no shoes, no words. It just looked like an ordinary brailler. "This brailler was alive, and I didn't even recognize it. It was talking and it could make sign language with its hands," said Damien. Ms. Jansen said, "There is no such thing as a talking Brailler, Damien. I think you are pulling my leg." She turned to leave the room, but as she walked away, she heard the brailler singing, "Que me vas a darsi vuelvo." She turned around and said, "Who sang that?!" She looked at the machine, but it was silent. She turned around to leave again and the machine asked, "Would you like a translation?" She kept walking out the door, but she peeked in to check on the brailler. As she watched, the brailler sprouted some wings and followed her down the hall, and it asked her, "Have you seen Damien? That's who I came to see." She decided she must be having a bad dream. This couldn't be true. Ms. Jansen called Mr. Henderson and said, "There is an unauthorized brailler on campus and it can talk, and sing, and speak Spanish and fly, and it is following me around the halls. Can you send the Braille Police?" Mr. Henderson called B 911, the number for Braille Emergencies. Tylor and Garrett, the Braille cops, answered, "What's your Braille emergency? We're here to help." Mr. Henderson said, "We have a fly-away brailler crashing our event." Tylor and Garrett showed up in their flying Braille-copter, and they arrested the uninvited Robo-Brailler and put him in Braille Jail. Robo-Brailler had to get some help. So he got on the phone and he called his old friend Zoe. He said, "I made a huge mistake. I crashed the Braille challenge. How ironic is that? You would think they'd welcome me with open keys!" Zoe replied, "We humans don't have keys, we have arms, but I get your point. Can I come to help you?" Robo-Brailler said, "I don't want you to get arrested too! I can't ask you to help me escape." Zoe answered, "I can bail you out, but how much does it cost?" Robo-Brailler said, "My bail is 10 million dollars." Zoe decided it would be better to get him a lawyer. "Based on your story, you didn't really break any laws, and Mr. Henderson never asked you to leave before he called the police. You should have a good case." At court, Judge Kyle said, "You can be free if you promise to be a regular brailler without arms, wings, or feet and be silent from now on." Robo said, "I think I'll just stay in jail, because I can't give up my superpowers." Harley Quinn, Joker's girlfriend from Batman, was his cell mate in jail. He thought she was the best bunky ever. He kind of loved her a little bit. One day she said, "We should bust out of the jail tonight. We can leave and get married." That night they crawled through the drain pipe under the shower that led into a dark dirty tunnel. As they slithered down the slimy tunnel, Robo felt something changing. He'd had glaucoma for many years, but as they slithered together, he saw a few flashes of light, and heard a loud sharp click behind him. When they emerged from the sewage pipe, he was surprised, angry and disappointed because he couldn't see any light at all. Now he was a blind Robo-Brailler. He hoped he wouldn't lose his hearing too, because it would be really hard to get around. Harley Quinn said, "Are we still going to be married?" Robo responded, "Do you still love me even though I can't see you anymore?" She didn't answer. Robo-Brailler was having difficulty recognizing where he was without his vision. He hoped that Harley Quinn would still marry him even though he was blind, but she had to guide him everywhere. Sylvia, a lovely small fairy, flew away when she saw Robo approaching. She was very shy. She was confused too, because she'd never seen a walking braillewriter. She had an idea though for something that would help Robo to move around. She plucked a sunflower stem from the ground and laid it in front of Robo so he would find it. Harley Quinn, his girlfriend, was guiding him when she spotted the beautiful flower stem, glowing and standing up on its roots. The sunflower was taller than a braillewriter and as tall as a tree. Sylvia decided she would introduce herself. "Hi, I'm Sylvia. I'm glad you found the sunflower. You can use it as a cane, and you don't even need to prune it because it's just the right length for flying." Robo was a little bit scared of Sylvia. "I'm just a little fairy, but you're a big heavy brailler with arms and legs. That's scary to me!" She was feeling a little fragile. Harley Quinn said, "Don't be afraid, we were just on our way to our wedding, and now Robo can travel by himself down the aisle with his new cane." Sylvia said, "I'll come to the wedding. I'll fly behind you and I'll bring some baby sunflowers that are small enough for bouquets." The wedding was in the forest. At first, they were just flying up to the altar to say their wedding words, and everyone was happy. Then the dark clouds started to build up around the wedding. The thunder fairies, with black hair, skin and clothing appeared, to crash the wedding. They were angry because they weren't invited. Robo invited them to the wedding at the last minute, and they changed into their rainbow fairy dresses and they had a wonderful party together after the wedding. The end. Guide Dog Users, Inc. Publishes Handbook to Help People Who Are Blind Decide if the Guide Dog Lifestyle is Right for Them Edited Press Release Guide Dog Users, Inc. (GDUI), the largest membership and advocacy organization representing guide dog handlers in the United States, is pleased to announce the recent publication of a revised handbook for perspective guide dog users that shares comprehensive information about acquiring and using a guide dog for safe and independent travel. The guide, 90 pages in length, and available in e-book and print formats, "A Handbook for the Prospective Guide Dog Handler," 4th Edition, updates a GDUI publication, called "Making Impressions," which GDUI members wrote and published a quarter of a century ago. The original manual assisted countless guide dog users with applying for training with and adjusting to working with guide dogs. Many of those original readers are now working successfully with a third or fourth or even an eighth, or tenth guide dog. Realizing how well their original publication had served guide dog users all over the country and beyond, GDUI has spent the past several years updating the manual to reflect changes in guide dog training methodologies, growth in the community of guide dog users, changes in the number of schools now available to provide training and dogs, and evolving attitudes among the public concerning acceptance of guide dogs as reliable and respected aids for blind and visually impaired people who choose dogs for independent travel. The informative handbook answers questions not only for the prospective guide dog team, but also for families of people who are blind, blindness rehabilitation professionals and educators, and the general public. Part One, Section One sets the stage with heartfelt accounts from many guide dog users who can speak with authority about the guide dog lifestyle which pairs humans and canines in a relationship, unlike few others, that involves a 24-hour daily bond between dogs and their owners. Then the handbook covers the whole process of deciding whether a guide dog is the right choice for mobility and safety, choosing and applying to a training program, learning to become a guide dog handler, returning home, and spending the next several years bonding with a dog who is likely to become an indispensable assistant and treasured companion. The manual outlines the indispensable support that an organization like GDUI can provide to guide dog users during times when their partnership can pose uniquely stressful challenges, for example when a guide dog team experiences denial of transit in a taxicab, or exclusion from a restaurant or other public venue, when a treasured guide dog becomes ill or passes away, or when family or friends don't understand how the team functions safely and independently. GDUI encourages readers and members to share the handbook with family, friends, colleagues, blindness and disability advocacy organizations, and other guide and service dog handlers. "A Handbook for the Prospective Guide Dog Handler" is available as an E-book and in print from at Amazon.com, Smashwords and other online sellers. Visit this link for further information and to explore options for purchase: www.dldbooks.com/GDUIHandbook/. Highlights of the 2018 Biennial National Conference By Karen Menenger Before too much time passes, I want to take the opportunity to thank all of those who attended the 2018 biennial national conference held in Nashville, Tennessee. I, as well as all of the staff here at NLS, appreciated the opportunity to meet with network librarians from around the country and for both groups to provide training and updates on a variety of important topics. NLS updated the network on the status of goals announced at the 2016 conference and shared our vision for the future. Below is a recap of some of the highlights. The efforts to move libraries and patrons to a wireless distribution environment will be called Future Access Reimagined (FAR). NLS is initiating the process to officially change its name (new name to be determined). Six network libraries are now using Duplication-on-Demand for circulation of talking books to their readers. Eight more network libraries are in the process of implementing Duplication-on-Demand. NLS is working with circulation system vendors to ensure all network libraries have the option to adopt Duplication-on-Demand. NLS will provide cartridges, mailing containers, and labels to network libraries. Network libraries will be given the opportunity to erase and reuse white cartridges and containers locally. Beginning immediately, network libraries may register patrons for BARD directly without requiring them to complete a separate application. A single sign-on capability is being developed that will enable network library staff to use only one ID and password to access various web pages (i.e., BARD, Network Library Services Website, Network Library Database). The MOCA pilot will be extended for current participants through the end of the calendar year (2018). The 2020 biennial national conference will be in Lincoln, Nebraska. Major conference takeaways: Wireless distribution is the future. Braille eReaders (refreshable braille displays) are coming soon. Readership will expand due to outreach efforts and simplified eligibility requirements. Regulations will be changed to ease access for people with dyslexia and other reading disabilities, but not until we have the capacity to serve them. NLS can and will expand audio and braille content. NLS must build or acquire media delivery infrastructure with sufficient capacity to serve a bigger patron base. NLS expects to have a new talking-book machine/playback system in five years. We don't know what it will look like yet, but we do know it will have wireless connectivity, a voice user interface, an "easy mode" for automatic download of books from a patron's wish list, onboard text-to-speech, and an emphasis on user experience rather than form factor of the device. Additional considerations: Migration from digital cartridges and hard copy braille to the cloud will mean a smaller footprint/less space is needed for network libraries as the physical collections are phased out. Less time will be spent by network staff on collection maintenance and managing physical inventory. NLS will encourage use of personal devices and investigate commercial off-the-shelf products, but will also maintain its commitment to providing a free player to patrons who request one, enabling all patrons to have equal access. A BARD Express MOCA Mode is envisioned to allow libraries or users to populate their Wish Lists, after which the titles would automatically download for easy transfer to a cartridge. Voice user interface devices like Google Home and Amazon Echo will continue to be explored once a streaming model has been developed. Self-service technology, expanded readership base, and efficiencies implemented effectively hold the possibility of actually reducing the per-patron cost of library services. Conference presentations will be posted for network libraries to review. There will be a notification when this occurs. For more information contact: Karen Keninger Director, NLS kken@loc.gov CCB Board Minutes Summaries Compiled by: Ardis Bazyn, CCB Secretary Teleconference Board Minutes January 11, 2018 (Approved June 12, 2018) President Judy Wilkinson called the meeting to order and Ardis Bazyn called the roll. All Board members and 21 guests were present. Some donations were made toward convention expenses. The corrected 2017 November and December minutes were approved. The treasurer's report for 2017 was accepted. CCB ended the year with a negative balance. A motion was Approved for the Board and staff to begin evaluating and applying administrative fees in a retrospective manner to all programs, functions, events and previously obtained gifts immediately. This means that costs will be assigned as we move forward from this point. A motion passed to Approve the fiduciary oversight mandate that requires a Board member to act as an active liaison to every committee, work group, planned giving trust, etc. Board liaisons will attend all meetings and report the nature of activities without compromising confidentiality to the full Board in open public Board meetings. Their purpose is to be a true liaison and insure that the Board members are meeting their fiduciary oversight responsibilities. A motion passed to adopt the Development Systems Int. Major Gifts Ramp-Up proposal. In the convention update, it was stated meal discounts were made on breakfasts and luncheons, but no discount was made on the banquet. The Constitution and Bylaws Committee is finalizing the proposed bylaws and will distribute them on the three email lists and available in other formats as well. The meeting adjourned at 9:22 PM. California Council of the Blind Convention Board Meeting Minutes March 24, 2018, (Approved July 12, 2018) Judy Wilkinson opened the meeting and Ardis Bazyn read the roll call. Gail Crossen was the only one absent. A report on the auction at the Dining in the Dark event showed CCB made approximately $11,000. A report on the Systems Development Int. Major Ramp Up program was given. Members gave a list of possible goals for CCB and the blind in the future. Members both young and old, full integration, strong advocacy, clear vision, funding sources, more paid staff, educational events, expand outreach to whole state, need services - offer tech training, have training classroom for both employment and for personal use, in-service training for facilities who need training dealing with persons who are blind, making inroads on attitudes for those working in social services, staff position for public affairs, media, scheduling interviews, training centers like NFB including guide dog, diabetes support groups, employment, mentoring training, training for chapter members, CCB economically solvent and more staff, community oriented organization, speaking to the community, inclusive of those with multiple disabilities, mentoring with teachers and other fields so they understand blindness, staff and Board dressed professionally, look at advocacy and committees. Zoom cloud meetings will be used for future outreach. Several chapters were not represented at this convention. Staff should be in southern and northern CA. Use volunteers in the office to answer phones and more paid staff as funding becomes available. Other items were meeting needs of members, marketing our programs and services, grassroots, planting grant, training chapters so each chapter has project, organized outreach in the medical community, reach underserved communities, "change is as good as rest." Committees should be active, have county contact, mentors working with people, diversity in the organization, continue to share ideas, roll up sleeves, chapter projects in media, at large members quarterly calls, family organization - attitude of gratitude. The meeting adjourned at 8:45 AM. Board Informational Session May 10, 2018, (Approved July 12, 2018) Judy Wilkinson called the meeting to order. Members for the new Board were invited as well as continuing members. Louis Fawcett outlined the Major Gifts Campaign, the 18-month calendar & donor centric three-year campaign budget. November 6 will be the major donor awareness event. Topics were brainstorming Host Committee participants and scheduling and executing a strategic planning session including Mission, vision, event purpose. More will be discussed in next informational meeting on May 24 including rationale for funding, campaign and what is fundable; what areas are from the Board perspective - support for seniors - strategic initiative; and special projects. Input from members will come after the Board discussion. An informational report on convention expenses showed the convention lost less money than any year in current history. An informational report on Dining in the Dark showed the function went well. An updated spread sheet will be sent. After concerns were raised, chapters and committees will be told to submit only the total volunteer hours, not separate functions hours. There needs to be a discussion of proper letterhead in the future. Sarah will collect chapter letterheads for this discussion. Gabe will create a list of policy priorities. The meeting adjourned at 9 PM. Corporate Strategy & Accountability Information Session May 24,2018, (Approved July 12, 2018) All Board members were present, including new ones. under the CCB 501 C3 nonprofit status, The exempt purpose of the CCB is as follows: "To expand the economic opportunities, stimulate the remunerative (paid) employment, and promote the general welfare of the blind of California, and to cooperate with the National Federation of the Blind in promoting the welfare of the blind everywhere". The Board considered whether the vision, mission and activities need to be adjusted to stay true to the founder's vision and the official exempt purpose of the CCB. According to the website, the vision of the CCB is that culture, laws, programs, and attitudes throughout California are inclusive of all people, especially persons who are blind or visually impaired. The Board agreed with the following: 1. CCB will keep the purpose as is in the current incorporation papers. 2. The following shortening of the mission statement will be presented to the membership: "The mission of CCB is to increase the independence and equality of opportunity for the blind and low vision community." 3. The following four strategy goals for the campaign should be recommended in the public meeting: Uncompromising equality of opportunity Stressing new beginnings (for those newly losing sight Senior solutions Achieving access with transportation and technology Three budget avenues: operations, key projects, and endowment The Board also discussed what we need from possible host committee members with details to follow. The meeting adjourned at 9:18 PM Teleconference Board Meeting June 12, 2018, (Approved July 12, 2018) Judy Wilkinson opened the meeting and called the roll. Ardis Bazyn, Gail Crossen, and Pam Metz were absent. Twenty-one additional CCB members were present. A motion passed to ratify the email vote to accept Ken Metz to the CCB Hall of Fame. A motion passed to ratify an email motion to work with Disability Rights California on the issue of accessible forms. The treasurer's report showed the smallest convention loss in recent history. A motion passed to accept the treasurer's report. A motion passed to drop the words "of opportunity" in the proposed mission statement. The new mission statement is: "The purpose of The California Council of the Blind is to increase independence and equality of all Californians who are blind or low vision." All agreed to leave for CCB members off any strategy. Judy read the list of goals the CCB Board had proposed for funding efforts. Some suggested youth be added. However, most felt youth would be covered under the topics specified. The following category names and descriptions were generally agreed upon: 1. New Beginnings: Focusing on transitioning to new blindness skills including outreach to optometrists and ophthalmologist. 2. Senior Solutions: Focusing on needs of seniors. Sharing support groups, mentoring, referring curriculum including Bonnie's ebook, as well as information and referral.) 3. Achieving access with transportation and technology (providing resources on the CCB website and paid and personal volunteer activities) 4. Equality Through Advocacy: Focusing on individual and legal advocacy All agreed CCB needs to create outreach to the medical community (ophthalmologists, optometrists) educating them about blindness and giving them some information. We need to ask them to contact CCB as a resource. We should organize a network of individual mentors to provide information and referral and create mentoring support groups. We should hire a Chair of Governmental Affairs (lobbyist) and also an advocacy specialist who could help people with individual advocacy needs. The consensus was for immediate assistance to provide advocacy and help with information and referral. This could be a hired person or volunteers. Suggestions for CCB milestones for Case For Support. The following list of past CCB efforts which were crucial to blind persons were listed: White Cane law ATM access Quiet car legislation Voting rights Prescription drugs Point-of-sale machines Audio Description (in movie theaters APS (Audio pedestrian signals: San Francisco) Low-income property tax. Licensing cases (teacher accreditation and law school exam access) Guide dog action including discrimination and the Robbins Act BART Access (elevators and Detectable warnings) Access to library services In public comments, a request was made to change the order of banquet presentations so awards aren't last. Teleconference Board Meeting Minutes July 12, 2018, (Approved August 9, 2018) President Judy Wilkinson opened the Board meeting and Ardis Bazyn called the roll. Pam Metz was the only one absent. Fifteen members of the public were present as well as Paul Shane. Since it was a negative vote, it wasn't necessary to ratify "No" vote for increase to crisis fund. A motion passed to ratify the email vote against further legal action toward Alameda County regarding accessible voting. A motion passed to accept the CCB 2018 Board convention minutes as sent. The motion to accept the May 10 minutes was passed. A motion was passed to approve the May 24 minutes. The motion passed to approve the Fresno hotel for 2019 to replace the 2019 bid from the Sacramento Marriot hotel because of remodeling problems and work with Fresno on the details to make sure they are satisfactory. For the 2020 Convention, Fresno and Sacramento are the current best options and all options will be checked. Peter Pardini, Judy Wilkinson, and Lisa Presley-Thomas will meet at the office on July 25th to make the change-over to the new treasurer. Ardis sent the business meeting minutes to the office. It was reported approximately $17,000 in sales was collected during the fireworks sale. The profit should range between $5,000 and $6,000. The CCB logo policy was discussed. The policy should be clearer so it was referred back to the subcommittee. It was suggested a form be available to fill in for logos once policy is set. After the hearing of the Public, the meeting adjourned at 9 PM. California Council of the Blind Officers and Directors July 1, 2018 [Editor's note: We are indebted to Donna Sanchez who updates and corrects the list of CCB officers and Directors, including the number of the term each is presently serving, the year elected to that term and the year next up for election. Terms begin on July 1 following election. The presence of an asterisk means that the individual served a partial term before the first full term.] Officers President: Judy Wilkinson (18-20, 2nd term), San Leandro, 510-388-5079 c, judy.wilkinson@ccbnet.org 1st Vice President: Gabe Griffith (18-20, 1st term), Concord, gabe.griffith@ccbnet.org 2nd Vice President: This position will remain vacant until the next election in 2019. Secretary: Ardis Bazyn (17-19, 2nd term), Burbank, ardis.bazyn@ccbnet.org Treasurer: Lisa Presley-Thomas (18-20, 1st term), Fresno, Lisa.thomas@ccbnet.org Immediate Past President: Jeff Thom (16-?), Sacramento, jeff.thom@ccbnet.org Directors Sarah Harris (17-19, 1st term), Fresno, sarah.harris@ccbnet.org Pamela Metz (17-19, 2nd term), Chatsworth, pamela.metz@ccbnet.org Sharlene Ornelas (18-20, 2nd term), Oceanside, sharlene.ornelas@ccbnet.org Paul Patche, Jr (18-20, 3rd term), Sacramento, paul.patche@ccbnet.org Linda Porelle (17-19, 1st term), San Francisco, linda.porelle@ccbnet.org Karen Shrawder (17-19, 1st term), Sacramento, karen.schrawder@ccbnet.org Rob Turner! (18-20, 2nd term), Sunnyvale, rob.turner@ccbnet.org Frank Welte (18-20, 1st term), San Leandro, frank.welte@ccbnet.org Vivian Younger (*17-19, 1st term), Downey, vivian.younger@ccbnet.org Publications Committee Linda Porelle, Chair San Francisco, CA 94112, linda.porelle@ccbnet.org Mike Keithley, Editor and Susan Glass, Associate Editor, editor@ccbnet.org Sarah Harris Roger Petersen Bonnie Rennie Donna Sanchez Dr. Catherine Schmitt Whitaker If you or a friend would like to remember the California Council of the Blind in your Will, you can do so by employing the following language: "I give, devise, and bequeath unto the California Council of the Blind, a nonprofit charitable organization in California, the sum of $____ (or ____) to be used for its worthy purposes on behalf of blind persons." If your wishes are more complex, you may have your attorney communicate with the Executive Office for other suggested forms. Thank you.