THE BLIND CALIFORNIAN Quarterly Magazine of the CALIFORNIA COUNCIL OF THE BLIND Winter 2020 Volume 64, No. 1 Published in Email (bc-subscribe@ccbnet.org), NFB Newsline, 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 Deb Runyan, proofing and large print production CCB Happenings 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 ccb_happenings-subscribe@ccbnet.org; Or on the web at www.ccbnet.org. Submissions for CCB Happenings can be emailed to ccb.happenings@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. Maximum length is 1800 words. The deadline to submit material for the spring, 2020 issue of THE BLIND CALIFORNIAN is noon, February 15, 2020. Shop at Amazon, donate to CCB. Access https://smile.amazon.com/, log on to 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 Corner, Mike Keithley President's Message, Judy Wilkinson No Rest For The Wicked, Jeff Thom For The Love Of Dogs, Community, And Independence: A Profile Of The GSGDHI Affiliate, Susan Glass Active Shooter Drill: A Patient's Perspective, Bev Clifford CCB Membership Committee, Vivian Younger Marvelous Meadow, Toni Eames A Journey Into The Newest Branch Of Government, Steven Mendelsohn An Important Science Update From The Foundation Fighting Blindness The Day I Learned It Was Okay To Be Blind, Bonnie Rennie How To Rescue Floundering Meetings--Even When Not The Leader!, Dianna Booher The 2020 ACB Scholarship Application Is Now Open, Kelly Gasque CCB Board Meeting Minutes CCB Officers And Directors Donations Editor's Corner By Mike Keithley Welcome to the winter, 2020 BC. I guess it is fair that fall is here with it's balmy afternoons and cold mornings. And what was the first thing that happened to me? A bad cold! Fortunately I get only one cold a season, so once this one is over, it's over! But we've got material that's not cold. Bev Clifford relates her experiences participating in an "active shooter" drill. Her story was part of SVCB's October program, The World According to Us. I mean all we're doing is passing the mic around so anyone can tell stories. All have been interesting, some will be published here and hosted in the CCB Home Companion. And we have a new writer in our midst: Toni Eames from the Fresno Chapter. Her work comes highly recommended by co-conspirators, so read it. We'll also have President Wilkinson's message, and an informative article from Steven Mendelsohn on the developing branches of government dealing with driverless cars. This is of obvious importance to you and me as this mode of transportation hasn't taken off yet and needs all the input we can offer. And there's No Rest for the Wicked. Now what is that about? Are you wicked? Interesting! Susan Glass shares a profile of the CCB Golden State Guide Dog Handlers affiliate. You'll be blown away by all the activity going on there. In closing, let me include news about the Professional Actor Training Program for the Blind & Visually Impaired. Access Acting Academy announced that they are now accepting applications for their flagship, first-of-its-kind, 5-week Professional Actor Training Program specifically for blind, low vision and visually impaired actors and future artistic change-makers. They are offering this 5-week training program tuition free. Friend of ACB and actress Marilee Talkington is the founder and Executive Director of this academy. This program is for beginners, early to mid-career professionals and those that may have acted then experienced vision loss and are eager to integrate their new perception and reclaim their artistic agency. Actor training of this master-level caliber and level of accessibility has never been available before. Now is the time for this profoundly rich and untapped talent to be cultivated, collaborated with, and realized. Program Dates: Jan 6 to Feb 7, 2020 Location: Los Angeles, CA Tuition: Free (housing and travel not included) Class Size: 12 Deadline to Apply: Nov. 30 2019 You'll get your BC after the deadline, but you can find out about the program by going to: www.accessacting.com So enjoy the winter BC, which sets you up for good things in 2020. President's Message The Tooth Fairy By Judy Wilkinson A recent issue of the magazine The Week contained a piece about a little boy whose tooth came out while playing Dodge Ball. Unfortunately, when the game ended, the tooth was nowhere to be found. What to do! How could the Tooth Fairy bring money without a tooth? Well the school principal wrote a letter to said Fairy on school stationary! That clearly did the trick as the next morning found the letter gone but the money there! What a miracle! I was reminded of my own Tooth Fairy experience. While a boarding student at the California School for the Blind, I lost two teeth one weekend—thanks to my dad and his trusty piece of string. (Today they'd probably have him up for child abuse using string and all.) I was beside myself with worry! How would the TF know where to find me and my missing teeth? I was dubious when my parents assured me the TF could find any child anywhere. I returned to school Sunday evening and carefully placed my teeth in a little jar on the window sill. My parents left. Just before going to bed, I thought I'd better make sure the teeth were still accounted for! To my amazement, the teeth were gone, but a whole dollar was tucked into the jar. I can still feel the wonder: imagine the Tooth Fairy not only found me but rather than waiting until the next morning as at home, the TF came to school even before I went to bed. I asked the dorm counselor to make a special telephone call to my parents so I could tell them the amazing news! The sheer wonder! The amazing joy of that miracle! We are beginning a season famous for miracles and wondrous happenings. Speaking of miracles, it has been a pretty miraculous year for CCB and 2020 promises to continue the pattern. At the end of last year, we were in pretty bad shape financially: we had just lost thousands of dollars on our Major Gifts campaign and had released our CEO. We began 2019 with only a few thousand in the bank. Then the tide began to turn. Our newly-elected treasurer Lisa Thomas, began to wrestle our finances into some kind of manageable order. The Phoenix Committee had ideas for moving forward, including subletting office space. We were reconciled to sharing space with others. But having placed our ad in May, nothing came through for months. Finally when I reached our landlord's attorney, he suggested we move to the smaller office just across the way from our current location. That happened smoothly (thanks in large part to Nicole's efforts) and we not only have a suite to ourselves, but we even kept the same suite number while paying nearly a thousand dollars less per month. Another "miracle": we just received word that our Energy Upgrade California grant has been renewed. While we initially will receive only about two thirds of what we got last year, James Collins our Educational Outreach Officer who piloted the grant through the process, assures us there are places we can trim while still maintaining his salary and meeting some of our ongoing office expenses. He will also be applying for other smaller grants which should become available early in 2020. Our fundraising efforts, while modest, have delivered around $8,500 net profit for our first-ever telephone auction. The Auction Committee, ably co-chaired by Andrea deKlotz and Larry Gasman, is already hard at work planning next year's event. Speaking of fundraising, our partnership with OntheMuv is coming to fruition. My husband Steve and I have been talking with minitreadmill inventor Patrick Netter and CEO Joanna Medin almost from the moment I assumed the presidency. Like any new product being developed from the ground up, there have been delays. But finally we hope to have our first demonstration units by the end of the year, and we will be bringing them to a chapter near you! Steve Bauer will be our able representative in Southern California while I spearhead the statewide effort. The motorized version, the Minitreadmill which can reach speeds of three miles per hour, should retail for $499, and the self-powered sitmill will sell for around $150. CCB has an exclusive contract to sell these devices to the blindness world for 18 months. But we hope to expand far beyond our own community. We envision reaching out to senior centers, hospitals, centers for independent living, any entities serving folks who can't readily go out to a gym, and yes, the general public. It will take us some time to get everything rolling, but soon you can invite everyone you know to purchase these nifty devices and profits will come to CCB automatically. We will net around 20 percent profit for each unit. We may negotiate special deals with certain entities but even then, we will get some portion of the profit without doing the work ourselves. OntheMuV folks are incredible to work with: they are open to all our marketing and development ideas. They plan to develop a talking remote so the visually-impaired user has the same feedback as sighted folks. The little self-powered sitmill has no information of any kind for anyone! (But you can put your Fitbit or watch on your ankle and stride along—all while sitting in your chair. In fact if you try to stand on these devices, the thing stops! The self-power unit, weighing around 13 pounds, can be easily picked up in one hand while the motorized unit weighing in at 23 pounds, is only slightly more difficult to carry about. We have formed a business Steering Committee to manage this new business. For the time being, we will operate under CCB's umbrella, but in time we hope to create a separate business entity. Since I was attending the convention of the Washington State Council of the Blind anyway, I displayed the devices in the exhibit hall to enthusiastic acclaim. Before we go further afield however, CCB members will have the first opportunity to order. We will have four sets of demo units, one for Steve Bauer, one for me, one for the office and the fourth to be deployed strategically. And of course you can test drive them yourself at our convention in June. Speaking of conventions, another "miracle"! When we met last June, we seriously considered dispensing with in-person conventions. However we made enough profit at that convention to encourage us to negotiate a contract for 2020 at the same hotel: the Doubletree in Fresno. Not only that, but we are in the process of negotiating a two to three year contract with them. Yes this means going to the same place for possibly up to five years, but with rising costs, especially in the major cities of both southern and northern California for even with the Doubletree booked through 2025, we feel this may be the only way to preserve our grassroots in-person convention. And Fresno is at least centrally-located and in-staters can get there by bus or train at relatively low cost. And what a legislative year we've had with final victory (mostly) for guide dog handlers whose dogs are attacked even when not in harness. We also got authority for orientation and mobility instructors to teach their students in meaningful locations off campus. See Jeff's article elsewhere in this issue for the latest legislative news! In terms of long-term financial planning, we received word that we are included in the estate of one of our members, and I know of another member who is remembering us in her estate planning. Such long-term planning is vital to our survival. We say it in every issue of the BC, but we urgently invite you to remember the Council in your estate and will, and to let us know your intentions so we can acknowledge your generosity while you're still with us. These accomplishments may be relatively modest, but they are miracle enough to inspire me as I begin my final six months as your president. You can create miracles yourselves: consider serving on committees or running for office in your chapters or even at the state level. Support your chapters and affiliates. As your leader, I know the entire CCB army is marching: with chapters and affiliates as individual units lead by your officers and boards. As your statewide board moves forward, we look back and are gratified to see the entire CCB army moving with us. No Rest For The Wicked By Jeff Thom The California Council of the Blind continues to lead the way in advocating on behalf of Californians with vision impairments. We can be proud of our accomplishments, but there is little time to enjoy them. We did, indeed, have some great victories in 2019. First, under the authorship of Assembly Member Lackey and the leadership of our affiliate, the Golden State Guide Dog Handlers, and both their president and CCB Governmental Affairs co-chair Alice Turner, along with the incredibly hard-working Margie Donovan, the third time really did become a charm. AB169, which addressed various flaws in the law regarding liability of pet dog owners whose dogs attack service animals, was signed by Governor Newsome. After suffering two vetoes from Governor Brown, we persevered in our efforts and finally struck gold. Now, even if your guide dog is not in harness, you can seek to have criminal charges brought against a pet owner whose dog attacks your dog. This area of the law remains imperfect. For example, determining to bring the criminal charges remains within the province of local animal control agencies, as opposed to police and sheriff departments, but you can bet that the guide dog handlers in CCB won't give up until they obtain all the protections they need. No less impressive was the victory we achieved through the passage of AB947, our special education bill. What made this achievement so noteworthy was the collaborative effort between CCB and the special education field. It began several years ago when we became aware that school districts were imposing severe restrictions upon the ability of orientation and mobility specialists to provide instruction, which in whole or in part limited the hours and environments available to students. CCB worked with the California Association of Orientation and Mobility Specialists and others in the field to craft a bill to address this issue. However, we did not stop there. The bill, authored by Assemblywoman Quirk-Silva, also placed into state law the list of services known nationally as the expanded core curriculum. Many of these services are those that sighted kids acquire in their daily interactions, but our students do not, thus necessitating classroom teaching to obtain them. They include daily living, concept development, social interaction skills and many others. We were unsuccessful in requiring them to be considered by school districts as part of the IEP process, but in 2021 our collaborative efforts will continue and we will pursue that goal. Not only did this bill achieve great results for our students who are blind or have low vision, but I believe that it provided the field with a real understanding of what power we have when they get together with us for the betterment of children with vision impairments. I hope and believe that lessons learned this year will prove fruitful for years to come. However, the year did not come without setbacks. $500,000 for the Braille Institute library contained in the 2018-19 fiscal year budget was not renewed this year. As is now occurring with the special education field, we need to be kept more closely in the loop by Braille Institute and in turn, we must work tirelessly to help them in this battle to restore and expand this funding amount. Another issue of great importance arises from a CCB Resolution adopted in 2018, that of passage of an accessible drug labeling law in California. We are working to have such a bill introduced and I will report our results in this area in the months to come. If we are fortunate enough to have a bill introduced, it will take hard work from all of us to carry the day. Finally, I want to take a moment to discuss a state initiative on which I am representing CCB and which is of importance to many of us. The Governor has issued an executive order requiring submission of a Master Plan on Aging by October, 2020. Although I was unable to obtain a position on the main committee crafting the plan, I am the sole representative from the blindness field on the Long Term Services and Supports subcommittee. The plan will apply to both middle class and low income individuals, and in reality, most folks that lose their vision later in life have worked all their life and would loosely be classified as being middle class. Most importantly, from whatever income strata one comes, obtaining the generic services that all seniors need, in addition to those services specifically needed by persons with vision loss, is very difficult for many and impossible for some. Others don't even know that such services exist. Educating our colleagues in the aging field about the needs of those with vision and hearing impairments is, itself, even a challenge. In consultation with others in the field of services to seniors with vision loss, I am doing what I can to bring these issues into focus as part of the much larger master plan discussion. I invite any of you to call me at 916-995-3967 or e-mail me at jsthom@comcast.net if you have ideas that you feel should be part of this conversation. I can't come close to guaranteeing that, in a topic so enormous, any of your ideas will get an audience, but I can do my best. Additionally, I will attempt to send out meeting notices. These meetings can be accessed telephonically and every one of them has time for public comment. Eighty percent of persons with vision loss are seniors and we must make our voices heard! In closing, I hope we can all enjoy some good food, good cheer, and lots of holiday joy, but prepare yourself for the CCB advocacy work in 2020. As the saying goes, there is no rest for the wicked! For The Love Of Dogs, Community, And Independence: A Profile Of The GSGDHI Affiliate By Susan Glass The academic disciplines of Community Studies and Service Learning both define the word "community" as a group of individuals brought together by common interests, common needs, and common problems. This strikes me as a pretty good definition of active CCB affiliates, and one of our most active is Golden State Guide Dog Handlers Inc, or GSGDHI. The 55 members of this affiliate constitute community at its best. They group themselves around common interests: their guide dogs, their connections to guide dog puppy raisers, their guide dog schools, their experiences of life and travel, and their guide dog lifestyle advocacy. These interests often morph into needs and problems which the members of GSGDHI address together. Pick up your virtual harness handle, and join me on a brisk tail-wagging journey with this enthusiastic and productive CCB community. And since I am an active member of GSGDHI, I am taking the liberty of writing in first person plural for the remainder of this article. The members of GSGDHI come from every region of California, and you might wonder how we stay connected throughout the year, especially since CCB now has only one annual convention. The answer? dynamic year-round programs, knowledgeable legislative awareness and advocacy, ongoing member recruitment, a virtual member lounge, a thriving chat list, enthusiastic officers and board members, and a newsletter to which many members contribute their voices. Programs Masterfully chaired by GSGDHI Vice President Maile George, the Program Committee sponsored 5 events for GSGDHI members in 2019. Three happened over the telephone and Zoom platform, one took place on the GSGDHI chat list, and one was offered during the CCB convention in Fresno. David Jackson, Toni Eames, GSGDHI President Alice Turner, Sharleen Ornelas, and Susan Glass all serve on this committee. The January program was titled "Ring in the New Year with Play." Mark Hines, from the Kong Company was the guest speaker. He talked about how play, along with various kinds of toys helps handlers and dogs bond with one another, relieve stress, and allow dogs to exercise their intelligence. The call was well attended by GSGDHI members. The next program took place on the GSGDHI chat list, and was called "What I Wish I Knew Before I Trained With My First Guide Dog." You may recall reading the article in the summer 2019 BC that grew out of that program. The article was titled "14 Things I Wish I Knew Before Training With My First Dog." In late April, representatives from a variety of guide dog schools joined us over the telephone to provide updates on their training programs, and give us guidance on preparing emotionally and physically for training with our successor guide dogs—at any age. Then on June 8 at the CCB convention in Fresno, local experts in nutrition, supplements and alternative medicine for guide dogs addressed our affiliate. This program came about because Toni Eames knew a veterinarian who was also knowledgeable about alternative and holistic medicine for dogs. Our most recent program (again held over the telephone) happened on November 4. Greg Steinmetz, Admissions and Graduate Services Manager from Guide Dogs of America, and Don Molles, graduate of the Leader Dogs O & M guide dog training program, addressed us on the topic, Do Technology and Guide Dog Travel Mix? The array of accessible GPS technology tools now available to blind and visually impaired people presents guide dog handlers with new opportunities and challenges. How do you juggle your Victor Trek or your Aira phone with your ear buds, your guide dog harness, your folding cane, your purse, your note taker, and everything else that you are carrying? Is it safe to listen to an Aira assistant or Sound Scape app while also focusing on your dog? At what point should you introduce navigation technology into your guidework? We discussed these and more questions during our call, and as you might expect, responses varied, but we all learned a lot. The Lounges Our rich program schedule is possible because several members of GSGDHI are well-established in the greater national guide dog community where they have forged deep and lasting connections with guide dog instructors, veterinarians, and other experts. The "play" program happened because members of the program committee knew Mark Hines, and his Kong products had been featured at several CCB guide dog convention programs. We also get program ideas through our member lounge calls. Whereas program calls feature guest speakers and moderated discussions, lounge calls are informal, and open to guide dog handlers who live outside of California, and are not necessarily members of GSGDHI. We hold lounge calls on the first Wednesday of every other month, and talk about whatever participants want to discuss. One night we talked about how to handle Uber and Lyft drivers who are reluctant to transport our dogs. Another time we talked about working with members of the public who question the manner in which we are handling our dogs. We've shared tips on dog diets, alternative medicine and grooming. We've helped each other through days when nothing in dog travel seemed to go right. We've celebrated the arrival of new guides, and mourned the passing of beloved guide companions. Lounge calls are warm and friendly: If we were physically together, we'd be sipping wine or coffee. I believe that they are an integral part of what keeps our affiliate vital and connected. Advocacy Gil Johnson and Diane Deutsch co-chair GSGDHI's advocacy task force, and this year, they and we have much to celebrate. Following a prolonged and rigorous letter writing campaign and lobbying of legislators, AB-169 was finally signed by the Governor. This law gives owners of guide dogs and schools providing instruction to puppies who are in the early stages of their training, recourse to receive compensation if the dog is attacked. If a guide dog or puppy in training is attacked by someone's unruly pet animal, the guide dog handler or puppy raiser can seek compensation for the dog's medical treatment, and for time taken away from guidework while both handler and dog heal from the experience. Margie Donovan was the leader of the pack in helping getting this bill passed after a three-year campaign. Though Margie and Gil spearheaded this legislative effort, the final victory happened because so many GSGDHI members lent their support. This is a clear case of a community working together to solve a problem. Membership GSGDHI's Membership Committee is co-chaired by Bob Acosta, and me, Susan Glass. Its other members are GSGDHI President Alice Turner, Toni Eames, Christy Crespin, and Nelly Emerson. Our first goal in 2019 was the creation of an enrollment form for perspective members. We thank President Alice Turner and Treasurer Vita Zavoli for their timely assistance. Our second goal on which we are still working is to create two self-satisfaction surveys. The first survey will be distributed to current GSGDHI members in January of 2020. The second survey will be sent to the entire California Council of the Blind membership to find those who are guide dog handlers but who have not joined GSGDHI. The Survey Sub-Committee is chaired by Christy Crespin. One of our projects was to create a GSGDHI logo, and there's a heart-warming story worth telling here. The artist who was designing our logo wanted to be sure she captured the realistic look of a dog in harness, and for that she needed a model. One of our members, Michele McGrew, had a photo of her recently deceased guide dog Garvey that was taken on his 11th birthday. The photo showed him in full harness with Michelle beside him in proper position. Based on this photograph, the artist created an excellent GSGDHI logo which will appear on our newsletter, and on any publicity materials that we distribute. In this way, Garvey's legacy continues. He was a special guy anyway; He starred as Helen Keller's pet dog in the play The Miracle Worker, that was presented over a year ago by the Tabard Theatre Company in San Jose California. Our dogs are always our living legacy. How fitting that we can honor the life of one of them in such a public way. President of GSGDHI, Alice Turner shares her thoughts about the success of GSGDHI. "GSGDHI is thriving as an affiliate because there are so many opportunities for involvement and leadership. Our Committee Chairs know how to harness the skills and talents of our members and together they achieve amazing results. GSGDHI Board Members are committed to support the community and to identify a path for all to be involved in a way that is meaningful for each member. Most of all, we are a community who share a common passion about the guide dog lifestyle. Our "tag line" is Forward Together! and this really sums up our affiliate." GSGDHI invites any CCB member with a dog guide to consider joining our affiliate. And if you don't yet have a dog, but are considering the guide dog life style, please reach out to us. I will end this article by providing contact information for key GSGDHI members who will gladly respond to your inquiries. Contact Information President: Alice Turner alicem1957@comcast.net Vice-president: Maile George Maileg921@gmail.com Secretary: Vivian Younger younger.vivian@gmail.com Treasurer: Vita Zavoli vzavoli@gmail.com GSGDHI Board members Diane Deutsch dianedeutsch07@gmail.com William Elliot bretsuki@gmail.com Active Shooter Drill: A Patient's Perspective By Bev Clifford {Editor's note: Bev is a member of the Silicon Valley chapter, and, during our October program, we had a story hour called WAU, or the World According to Us, and Bev told this story. This event demonstrates that visually impaired people can live rich, adventurous lives, an I think WAU should be part of your chapter activity.} As a member of Kaiser San Jose's Member Patient Advisory Council (MPAC), I recently had the opportunity to participate in one of Kaiser's quarterly disaster drills, to prepare hospital staff for the sudden and unexpected intake of patients in an emergency. This is the story of my experience. At 5 PM on a warm Thursday afternoon (September 26, 2019), I arrived at the Ambulance Bay just outside the Emergency Room entrance at Kaiser San Jose, and was greeted enthusiastically by the coordinator of the drill. She explained that a call had gone out for doctors of every stripe (along with nurses, pharmacists, and any other available staff members) to take time away from their busy schedules and volunteer for the evening's proceedings which, believe me, isn't always easy for them to do, as nursing care, operations, and emergencies are still going on in the hospital in real time. Some of the staff were asked to gather outside in the Ambulance Bay to do triage as patients arrived, and they would be in constant radio contact with others who would remain inside the hospital to give vital information and consultation as needed. There were plastic chairs arranged all around the Ambulance Bay, each section of chairs having a different designation: triage, X-ray, Operating Room, and so on. There weren't as many volunteer patients as Kaiser would have liked, so several chairs were occupied by teddy bears and other stuffed animals as stand-ins. Some patients were the children of participating hospital staff members, which added a bit of lightness and humor to the otherwise serious nature of the drill. All I knew when I arrived was that my job was to be one of several volunteer patients, so I was interested to learn just what that would mean. A friendly gentleman ushered me to one of the plastic chairs, where the evening's scenario was explained. We patients had been at a football game at a San Jose high school when suddenly some crazed person with a gun showed up and started shooting at us. In order for the doctors to know exactly where I had been shot, another gentleman created a wound site by wrapping several thick layers of gauze around my waist, and painting them with something like Red Dye #2: the wound looked quite authentic! The kids got a big kick out of this part of the drill, as some of them got their faces painted, and others had fake bloody bandages wrapped around their arms or legs. Once I had a bona fide wound, I needed identification, so someone put a lanyard around my neck to which was attached a huge, cardboard placard with all my stats, so that the doctors could immediately see who I was and how I had been wounded. According to my placard, I was now Natalie Zhang, a 29-year-old woman who was 32 weeks pregnant, and I had been shot in the abdomen! Now the really interesting part of the drill commenced. I wasn't sure how much the doctors knew about my condition, as no one had thought to read aloud what was on my placard. But from what I did know, I figured I could act the part and improvise as I chose. So when hospital staff came over to check me out, I started yelling, "It hurts! It REALLY hurts!" Okay: this patient obviously needs drugs! But which ones? This called for the doctors to consult with a pharmacist, who recommended that I be given Dilaudid—and I know that stuff's really good, because several years ago in real life I dislocated my shoulder, and Dilaudid put me straight into Lala land, and I went from pain to fun! Before they injected me, however, I kept moaning, "My baby! Save my baby! Don't give me anything that will hurt my baby!" And they promised me that they wouldn't. Then I thought to myself, "Hmmm ... In my real life past, when I lose blood in one accident or another, I get light-headed and start feeling a little weak. Wouldn't Natalie have that reaction, too?" So I told my doctors that I was feeling light-headed. They immediately started asking me questions: Was I dizzy? Did I feel nauseated? "Dizzy!" I croaked. And then things got exciting! My vital signs were suddenly worse, and since the doctors attending me could see that there was an entrance wound but no visible exit wound, this fact was worrisome. It meant that I was probably bleeding internally. Now what to do? Another urgent consultation... I needed to go to the Operating Room ASAP! Not only that, but they'd have to take the baby! "Oh no, I'm only 32 weeks along!" I shrieked in despair. But wait! Was there even an Operating Room available—a legitimate question, since operations were still being performed in the hospital in real time. Whew! there WAS a room! At this point, I was shepherded to a second chair in the Operating Room section of the Ambulance Bay, where more consultation ensued. Once the operation began and they could see what was going on inside, they found out where the internal bleeding was: my spleen had been severely damaged and they couldn't repair it, so it had to be removed, which stopped the bleeding. Well, that was okay, because a person can live without a spleen, apparently. When they were through with me in the Operating Room, I was told that I had survived and, miracle of miracles, so had my baby and it was a boy! In the meantime, other doctors were doing triage on other patients, and I had to go to another chair far from the action because they were through dealing with Natalie. So I, Bev, sat for a quiet time waiting for the next thing to happen, and gratefully eating a bit of a snack, as I hadn't had supper yet. While I waited, there was a short debriefing, a discussion among the doctors of what had occurred with all the other patients, which I was too far away to hear. I thought perhaps my job was done. But I was wrong. After a bit, I was directed to a second triage chair, my Natalie placard was removed, and I was issued a second placard and became Nicole Taylor, a 41-year-old woman who had been shot in the ankle. I was definitely in pain, and had no compunction about letting everybody know this so again, Dilaudid was prescribed. It was obvious to the doctors that my ankle was not only bleeding, but was also dangerously deformed; and the skin of my foot was very pale, an indication of decreased circulation. Through my protestations of pain, I could hear them discussing whether or not they needed to "reduce" my foot, or if I might need something called a CT Angio. Reduce my foot? What in blazes did that mean? Were they planning to make it smaller somehow, maybe cut something off? Having no idea what they were talking about, and figuring that Natalie would certainly want to know, I hysterically demanded to be told what a foot reduction meant, and then what in the world was a CT Angio? Patiently the doctors answered my questions: Reducing my foot meant putting my ankle back into its proper position, to see if I would get circulation back in my foot. If the skin remained pale, they would know that one or both of the two arteries that serve the ankle were damaged or perhaps destroyed, in which case they would need to do a CT Angio to assess the damage. But if they reduced my foot and the skin returned to its usual hue, they would know that the circulation hadn't been affected by the gunshot. They were hoping that at least one of the arteries was still functional, because you need one artery to be working for normal circulation to occur. If there was only one artery left and it was damaged, they'd have to figure out a way to fix it. When it was finally decided to reduce my foot, they injected me with a second drug, from which I deduced that the pain of foot reduction must be excruciating! This time they didn't need to move me to a different chair because they could do the work right where we were situated. When they were through, I learned that I was again a very fortunate patient: My circulation had returned to normal, and no arteries seemed to have been impaired. Therefore, no other treatment would be needed at that time except for pain management, and they could proceed to a new patient who might be far worse off than I was. Since the doctors were again finished with me, I thought I might be free to leave, but instead I sat relaxing for a while as other patients were dealt with. Little by little, they began leaving the Ambulance Bay for home, and soon I was the only one left. I was then informed that there would be a final debriefing, and I was welcome to listen in and give a patient's perspective on the experience. Thus, I was privileged to hear feedback from the entire medical staff about what had worked well in the drill, what hadn't worked quite so well, and what improvements needed to be made in future. I found this fascinating! And when I was asked for input, I was happy to report that the medical professionals involved in my care had been kind, patient, willing to answer my anxious questions, and concerned about how I was feeling and what I was experiencing. I was able to listen in while they consulted with one another and with the inside hospital personnel, and from my vantage point it seemed that they had been thorough, and were working as conscientiously as possible to ascertain the best and most effective treatments. You may wonder why I didn't make a point of the fact that I was a blind patient. I did consider doing this, but realized at the outset that these people were concentrating with all their might to do the best job they could in the face of this disaster, and throwing a disability at them right then wouldn't be the best option. If I participate in future drills, I can then ask the coordinators if it would be helpful for the staff to know in advance that a patient has a disability, and that information could appear on the person's placard along with all the other necessary stats. All in all, the drill was a great learning experience for me, and I know that Kaiser appreciated my participation and input. CCB Membership Committee Submitted by Vivian Younger The CCB Membership Committee has been hard at work reaching out to chapters and affiliates. During the October 2019 Focus call, the committee presented ideas about the foundations of membership growth. CCB Membership core members will be posting membership tools such as: resource links for the newly blind and seniors, and a YouTube link. I wish every chapter success in accomplishing a chapter project goal this year. Vivian Younger CCB Membership Committee, Co-Chair Marvelous Meadow By Toni Eames I was terrified! Where were my mom and my siblings? What was that snorting, stamping noise? I huddled in some soft, nice-smelling stuff and mewed for my mother. In a few minutes a hand encircled me and lifted me to his face. He whispered tender words in my tiny ear. He rubbed his cheek against mine and I felt moisture. Later I learned those were tears. The soft, caressing hands carried me some distance and presented me to another man he called his dad. They discussed the despicable person who would place a tiny blind kitten in a horse stall in the hope I would be crushed or kicked to death. This kindly family was not about to let that happen! Although I missed the comfort of my mother's milk, I was old enough to eat on my own and was fed yummy, nutritious kitten food. For my own safety, I was kept in a large enclosure with the family dog, so I couldn't wander away. Apparently, no one told me kittens were supposed to be afraid of dogs, so the ability to curl up with a furry large canine body was comforting to me. At first, I was scared when I was placed into a box and I heard the sound of a motor. When the motor stopped, I was gently lifted onto a slippery surface and a kind woman they called Dr. Susan ran her hands all over me, pronouncing me in good health except for a serious eye infection. Apparently, my eyes had not developed inutero and my eye sockets were infected. I felt a prick, which really didn't hurt and Dr. Susan soothed me with the explanation she had given me kitten vaccines! The CCSPCA was phoned but they were over run with healthy kittens and said a blind kitten with an eye infection had little chance of being adopted. But upon hearing of my plight, a CCSPCA employee contacted a friend, who frequently fostered kittens. She had the perfect solution, but some serious persuasion would be in order. My life as a beloved family member was about to happen! Toni Eames, a totally blind friend, wanted to adopt an older cat with a well-established personality! The friend asked if she could bring me over for a visit, no commitment necessary. Toni said the kitten had to be the most outgoing feline before she would even consider checking me out! Desperately wanting to make a good impression, I used all my feline charms. I purred; I cuddled and I encouraged the two Golden Retriever guide dogs to sniff me. Toni held me in her arms, and I could tell she was weakening. I clambered onto her shoulder, and she rubbed her chin along my silky face. I reached out my dainty paw and caught the tear rolling down her face. Feeling instinctively drawn to this warm, sensitive woman, I was determined to make this my permanent forever home! Because Toni is very independent, I was annoyed with her surprise at my level of independence! We lived in a two-story town house, and I quickly learned my way around. When encountering a wall or solid piece of furniture, I cautiously maneuvered around it. Stairs were another matter, however. Bravely climbing up the long flight, I was initially fearful of coming down. Remember, I was still relatively tiny at three months old, and I didn't like to make a move unless my feet touched the surface first. With encouragement from my new human friends, I conquered my fears and down the stairs I went! A Christmas tragedy brought a second kitten into the home. Yancha, Japanese for playful, became my best friend. We wrestled and chased, then fell asleep wrapped around each other. We played chase games and sometimes I pounced, but Yancha moved and I landed on the carpet. A blind human might feel terribly humiliated, but I just picked myself up and casually gave my lustrous long coat a needed shine! For someone who didn't want one kitten, Toni was pretty excited about Yancha and me. I overheard a phone conversation where she was glowing about us. She told friends she had fallen under my spell, and could not resist my charms. Meadow, my new name was described as confident, playful, loving and remarkably adaptable. She commented that Yancha was about a month older than me. She related Yancha was statuesque, and during the rare times he stood still, one envisioned him scheming his next mischievous move. When he was awake, he was generally in action, but he also slept long and hard! He and I were so good together, wrestling and mock fighting! Our efforts to tumble around, knock things off shelves, pop in and out of closets made Toni laugh. Since I cannot look in a mirror to admire my tortoise shell beauty, I'll have to repeat what others have described to Toni. I don't know what the words stunning, gorgeous or magnificent mean, but apparently, I am multicolored with shades of orange, tan, beige, dark brown and black. I have discreet stripes on my back and down my legs. My life did not settle down into a calm pattern. I had been to visit Dr. Todd Conlan for a medical procedure to prevent me from having kittens. At the same time, my eye sockets were cleaned out and the eyelids were sewn shut. It was explained this would prevent future infections and the need for ongoing eye treatments, something I disliked. I woke up from a long sleep feeling groggy and disoriented, but the veterinary staff laughed at my ravenous appetite. They said I ate like a truck driver! Although I was uncomfortable, the kindness of those who cared for me was fantastic. They cuddled and pampered me. As soon as I arrived home and smelled those familiar scents and heard the tail wags of my Golden pals, I knew things were back to normal. I was still a bit sore, so refused to play wild wrestling and chase games with Yancha. As time went on, I recovered my strength and stamina and began investigating chairs and tables with my front paws and knocking things off shelves and counters like any sighted kitten. I used to love being picked up to cuddle, but, because I thought I might be getting eye drops, I no longer liked it. I feel insecure when lifted not knowing where I'll be taken or where I'll be placed! However, I do love having my tummy tickled, particularly when I am lying on a firm surface such as the couch, the table, the floor or the top of my litter box. Excitement was in the air the day Toni arrived home after being in the hospital for back surgery. Being the more assertive cat, Yancha rubbed himself against her legs and purred his loudest best. I felt so pleased having my world secure again that I even spent time in Toni's lap! Toni was recovering nicely when tragedy struck. Several days before that holiday where the television features chocolate bunnies, Keebler, Toni's guide dog, got very sick and died at home four days later. I did not know what death smelled like, so tiptoed passed the crying people to sniff Keebler. She was not breathing and her heart was not beating, and I never experienced her again. Every time I think I'm settling down to a peaceful existence, Toni shuffles things around and messes up my existence! This time it was a confusion of boxes and cartons. Apparently, Toni bought a house without stairs and James would be her roommate. As blind beings, Toni felt as confused and disoriented as I among the forest of boxes in the new home. However, Yancha encouraged me to follow him in a game of exploration and I had the layout of the rooms in my memory bank in no time. It was much easier to get around once the cartons were emptied and everything found a permanent place. Yancha and I were even presented with a large cat tree, and to everyone's amazement, I quickly and confidently learned to climb to the top for an afternoon nap! Can't things stay the same for a while? My peace, my contentment was invaded by a new dog and four new cats. I didn't know these cats; they just appeared one day, apparently family members of James. Yancha does his share of challenging, but because these newcomers don't know I can't see them, I have become a bit pushy and hissy. I don't want them to think I am an easy mark for a sneak attack! In the meantime, my beloved Yancha still spends time grooming me and showing me each new thing that comes into the house. The greatest new thing entering our lives is Toni's new Golden Retriever guide dog, Adora. She has fit right into our animal pack and is completely cat friendly! All I ask is please no more surprises or changes for a long time to come! A Journey into the Newest Branch of Government By Steven Mendelsohn Advocacy is one of the proudest legacies of the CCB. For decades, most recently under the leadership of Jeff Thom, our members have been in the forefront of advocacy for civil rights, economic empowerment, quality services, information access, education, and more. Just this year, we won two tremendous victories. Led by Jeff and Sylvia Reese, by the members of our Golden State Guide Dog Users (GSGDHI) affiliate, and with the help of many members, we secured legislation enhancing protections for our guide dogs (and all service dogs) against attack. And on the education front, we eliminated restrictions on O&M instructors' work in schools and we expanded opportunities for inclusion in students' individualized education plans (IEP's) of key training for blind and low vision students beyond the standard curriculum. Beyond these, we joined effectively with other groups in bringing about the creation of the state's new Master Plan on Aging. At the same time, we have continued working with dedicated public interest attorneys to secure and advance our rights through the courts. Most recently, from audio-description in movie theaters to accessible healthcare information, CCB has pressed forward to support and articulate the aspirations of our members. In light of these achievements and the history that precedes them, most of us are generally familiar with the role of the legislature in passing laws and with the potential of the courts in interpreting and enforcing them. But in addition to the legislative and judicial branches of government, there is another branch of government where some of the most far-reaching decisions are being made. Though it has no official name, we call this the administrative branch. It consists of two types of agencies, state agencies under the direction of the governor such as the Department of Rehabilitation (DOR) or the Department of Healthcare Services (DHCS), and independent state agencies such as the Public Utilities Commission (CPUC). These agencies, often in obscurity, do the work of interpreting, applying and enforcing the laws we get enacted. For many reasons, executive branch and administrative agencies, boards and commissions have come to play a growing role in our lives. As issues become more and more complex, the legislature must delegate more and more responsibility for the details of implementation and for fine-tuning to the agencies charged with oversight and enforcement of each law. Then too, because no one benefits from further crowding of our overburdened courts, many statutes and state Supreme Court decisions require that disputes be resolved or decisions be made administratively. Although less well-known than our legislative and judicial work, CCB can also claim key successes in the administrative arena over the years. Most important, going back for almost a generation, has been the work of Eugene Lozano in connection with standards for architectural accessibility. Some may think such issues are of concern only to people with physical disabilities, but such matters as curb-cuts, textured edges, color contrasts or accessible elevators also come within the domain of architectural and physical access. On behalf of CCB, I had a recent experience illustrating current-day realities and emerging patterns in the administrative sphere. The subject was one of surpassing importance and intense interest to us: autonomous vehicles (AV's). State law vests authority over the testing, licensing, design, safety, and yes accessibility, of AV's mainly in two state agencies, the Department of Motor Vehicles (DMV) and the Public Utilities Commission (PUC). Broadly speaking, DMV is responsible for addressing and approving vehicle design, engineering and related considerations including safety, while the PUC is also jointly responsible for safety, but safety more in terms of where and how the vehicles are deployed and operated than, let's say, how well the brakes work. No one should think the issue is any longer whether we will or will not have AV's. That horseless carriage is long out of the barn. AV's are here and coming. That being so, the key decisions facing society are: for what purpose, for what users, where, when and with what oversight and expectations. To begin answering these questions, CPUC has authorized experiments. They and DMV have authorized AV use on a limited basis. Several companies are currently licensed to operate these vehicles on the streets, some without passengers, and two with passengers. Of course, where they can operate is also limited by the infrastructure and various other considerations. In this state the experiments with carrying passengers have not included the general public. As part of their desire to advance toward greater utilization, the AV companies have sought approval to charge for rides. In this way, judging from their testimony before the Commission at its October 22nd workshop, these companies hope to test public acceptance and derive some revenue, as well as to gather further data for the commission on a variety of operational issues. From the Commission's standpoint, the decision whether to grant authorization for this next phase of the AV experiment appears to depend largely on whether the data collected by the licensed companies during the current phase support this expansion of their operations, and whether the next phase is likely to yield further data of value. Numerous interest groups, including representatives of transportation companies, local business associations, governmental and disability organizations spoke, focusing on the quality of the data thus far gathered, on what those data reveal and how they can be used, on the issues that they believe any next phase should consider, and on what they want the commission to require. Much of the current data are technical in nature, involving operational features, distances traveled, incidents of various kinds, and a host of other technical and operational parameters. Existing data contain little or no information about customer response, let alone about the experience of customers with disabilities. Since the vehicle models used in the pilot phase and planned for the near future do not allow for wheelchair access, it seems likely that data from the next phase will likewise be absent for at least one major disability constituency. While wholeheartedly joining in the demand for wheelchair accessibility, we are hopeful that data pertaining to our experience will not also be absent. Accordingly, the Council submitted written comments and gave in-person testimony at the October 22 workshop. CCB had originally been contacted by one of the AV companies seeking our support for an unrelated expansion of their authority to carry commercial goods. It is very common for industry groups to seek the support of disability organizations whose members, they believe, will benefit from the goods or services they wish to offer or from the regulatory changes they seek to bring about. In our written comments and our oral testimony at the workshop, as well as in the ensuing discussion among attendees, commission members and commission staff which the relatively informal nature of the workshop permitted, I made clear that accessibility was our bottom line. We were gratified to learn at the workshop that the Commission considers accessibility to be an integral component of its jurisdiction over safety, but we were concerned that neither the companies nor the commission, though sincere in their commitment, fully understood the meaning of accessibility for people with no or limited vision. Thus I emphasized what accessibility means for us and what must be done and documented to make sure that AV's, whenever and however they come into our communities and our lives, afford us equality of access and freedom of movement that is identical to what users without disabilities can expect. Specifically, I explained that the ability to command the vehicle and to interact with it while "driving" is important but not the entirety of the matter. Discussion of accessibility seems often to focus on what would happen once people were in the vehicle, on the "driving" itself. But before getting swept away by the miracle of blind people's being able to "drive," we need to know: how are people to locate the vehicle when it arrives to pick them up; how people will activate it (tell it to start) once they are settled and belted in; whether the vehicle has stopped because it has reached your destination or because there is a traffic jam on the freeway, or exactly where it has stopped once the journey is completed. Several companies have talked about how AV's will come right to the passenger's location, but what happens in a dense urban environment if there is no available space at the curb, or if the nearest curbside access is a block away across a six-lane thoroughfare, or is in a parking lot where hundreds of vehicles stand row upon row in close proximity? Questions such as these, questions going to what we call the infrastructure of accessibility and to the experience of interacting with the AV technology, must be answered, and these are questions that any new phase must address. Whether the commission will demand those answers remains to be seen. But one thing is sure. It is only through long-term involvement in and close attention to the regulatory process as it unfolds that our interests can be safeguarded. Here, where the key early decisions that are being made now will likely provide the template for future regulation and deployment of this game-changing technology, such attention and participation are even more than ever necessary. This summary has been offered for three reasons. First, it is intended to update you on what CCB is doing to advance your interests and ensure our access to this burgeoning transportation revolution. Second, it is intended as an illustration of how the administrative/regulatory process works. Third and most important, I hope to interest our members in further involving themselves in this emerging dimension of advocacy and lawmaking, in advocacy for proper rules and regulations to implement laws that have been passed and court decisions that have been made. There is virtually no law, no technology, no issue that does not involve executive branch/administrative agency action at one key point or another. Whether in defining terms, writing rules, resolving conflicts, granting permissions and licenses, setting fees, addressing privacy, establishing eligibility or certification criteria, creating notice or consent requirements, requiring accessibility, setting forth reporting requirements, creating or approving annual plans, exercising discretion, and in so much more, the low-level, often all but invisible decisions that agencies make on a daily basis influence our lives in countless ways. Our milestone legislative successes of 2019 exemplify this point and reveal the importance of the administrative process to their ultimate impact. The governor's signature on a bill is not the end of the story but in some sense only the beginning. Enforcement of our hard-won guide dog protections will depend largely on the willingness of local officials to respond. Availability of the ECC services now included in students' IEP's will depend, in the first instance on the rules the state Education Department crafts to implement the new law, and in the long-run on the policies local school districts choose to adopt. Where as here the law gives school districts discretion to include the "extended core curriculum" (ECC) in blind and low vision students' IEP's, advocacy on the local level (including educating local decision makers on why this training is so important) may prove decisive. Whatever your area of interest from guide dogs to accessible websites, from individualized education plans to accessible information about services and benefits, from accessible pedestrian signals (APS) to building codes, from public transit stop announcements to door-to-door paratransit service there is an issue, complete with its own administrative settings, that is right for you, sometimes more than one, whether federal, state or local, whether through commenting on proposed regulations, filing complaints, initiating petitions or serving on Boards or Commissions (governing Boards if possible, advisory if not), and to just showing up to make your voice heard in a setting where you can play an important role and very possibly make a real difference. In a time when powerlessness has become an anesthetizing mantra, it would be foolish to romanticize what one individual or one small organization can do. But our experience, as individuals working together for shared goals, vividly demonstrates that civic activism remains a viable and eminently rewarding enterprise. Waging the battle on so many fronts may be exhausting, but it also gives each of us a chance to apply our people skills, pursue our interests in the ways, in the places and on the subjects that matter to us most. Name an issue and we'll find you a forum where it is up for grabs! An Important Science Update from the Foundation Fighting Blindness FDA Authorizes Stem Cell Clinical Trial for RP in Los Angeles Phase 1/2a human study will evaluate neural progenitors for preserving vision Cedars-Sinai, a non-profit healthcare organization in Los Angeles, has received authorization from the US Food & Drug Administration (FDA) to launch a 16-person, Phase 1/2a clinical trial of human neural progenitor cells—stem cells that have almost developed into neural cells—for slowing retinal degeneration and preserving vision in people with retinitis pigmentosa (RP). Investigators will be able to launch the trial after their study protocol receives final institutional review. The trial is being funded by a $10.5 million grant from the California Institute for Regenerative Medicine, a state-based stem-cell research institute. The study's principal investigator is Clive Svendsen, PhD, professor of Biomedical Sciences and Medicine and director of the Cedars-Sinai Board of Governors Regenerative Medicine Institute. David Lao, MD, from Retina-Vitreous Associates Medical Group in Beverly Hills, will be injecting the cells subretinally in patients. Shaomei Wang, MD, PhD, a professor of Biomedical Sciences and a research scientist in the Eye Program at the Board of Governors Regenerative Medicine Institute, conducted the initial lab research that showed these cells offer promise for treating RP. When launched, the Cedars-Sinai clinical trial will be the third stem-cell study for people with RP. Two companies, ReNeuron and jCyte, are conducting Phase 2 trials for retinal progenitors–stem cells that have almost matured into photoreceptors–for RP patients. The emerging ReNeuron treatment is designed to restore vision by replacing photoreceptors. The emerging jCyte therapy is designed to preserve and rescue the patient's existing photoreceptors. Thus far, both the ReNeuron and jCyte therapies have had good safety profiles and shown early signs of efficacy. "We are glad to see more cell-based therapies move into clinical trials for RP. These trials are all at an early stage, so we have a lot to learn. But results so far are encouraging," says Brian Mansfield, PhD, executive vice president of research and interim chief scientific officer at the Foundation Fighting Blindness. The Day I Learned It Was Okay To Be Blind By Bonnie Rennie A sunny, seductively warm southern California day. The summer I was 21. Staying at my parents' house, attending summer school at Cal State, poised to enter my senior year in college. a magical summer, as they say, watching with fascination as the train of my life rapidly picked up speed and headed, who knows where? If you can not relate, think back on the summer in which you were 21. Instead of basking in the sun outside, I prepared to meet my guest, and an important interview. I had applied to the California Council of the blind for a small scholarship, and if the visit went well, I would get a little help with private college tuition. The Council rep soon arrived: Mr. Bob Acosta, his German Shepherd, and his driver. We passed a very pleasant hour, Bob inquiring about my college and career goals, vision loss story, how I was faring as a lone blind young woman on campus. And did I know anything about the work of the California Council? He was engaged, very professional, treating me like the competent adult I hoped I was. Or would soon be. Bob encouraged me in my plans to apply to graduate school in social work, including obtaining the field and volunteer experience that year, which would increase the chances of being accepted into grad school. Again, in a professional manner, he furnished some answers to questions I burned to ask him, but was unsure as to whether I should: Was he blind or partially sighted? What kind of work did he do? Did he in fact have a regular job? How did he manage his life as a fully independent visually impaired adult? At that point in time, I had not been offered, or exposed to training in the skills of blindness, other than the mobility training I had to fight for even to get. Bob was married, with a young son, lived in his own condo, worked at that juncture for several years, as a high school history teacher. Teaching sighted kids! Wow! He didn't work in a blindness-related job! He hired some help to make things easier: part time readers, and drivers for occasions such as meeting me for this interview. And on top of all that, he was active in the council. Bob related some of the ways in which membership and participation in the California Council of the Blind had made a huge, positive difference in his life, and in the lives of many blind friends. Space doesn't permit me to enumerate the benefits Bob described, but I eagerly soaked up every word. There was no pressure to join, but Bob invited me to attend the next statewide convention, upcoming across town, and meet other successful blind adults from all walks of life, which I did, and was there handed my scholarship. Sounds like a pretty sweet, but tame story, right? Probably the real story was what was silently going on in my junior head as we talked that day, And what our conversation eventually led to. I saw, likely for the first time, that it was okay to be totally blind, and that there was a real opportunity for me to develop into a full-fledged, independent, capable working adult. And more than that, it was perfectly respectable to be totally blind, in that good old "sighted world" that constantly reminded me that everyone else possessed something that I did not, and never would have. We don't have time for my back story here: born prematurely, resulting in Retinopathy of Prematurity, limited low vision until age 14, unexpectedly losing all of my sight as a high school freshman. The only blind kid in my regular school since seventh grade, I was always trying to blend in, fit in. My parents were good, hard working people who did many things to help my sighted brother and me. Yet from my youngest years until that day I talked with Bob Acosta, the subtle messages I got regarding my blindness were negative. I was a nice person, but it really wasn't acceptable not seeing well, let alone at all. As the only person with vision loss in all of my circles, I had to keep up a brave front, work extra hard for everything, try so hard to be like my teenage peers. And I often felt that I failed at so much of that. I don't mean to sound whiny, but I couldn't help worrying about what lay ahead, as the only blind adult in my world. I believe it is obvious as to why meeting a person like Bob that day was so very encouraging. And to hear that there were numerous others, people of all kinds and interests, who functioned well as blind adults, and especially how they came together frequently, organized, advocated for themselves in arenas such as equal employment, access to housing and civic opportunities, used alternate reading and writing formats, practiced countless other ways to compensate for lack of eyesight in family life, social activities, and recreation, as well as on the job. That single visit was the start of my journey to an optimistic outlook on the potential for a meaningful, productive future. I was further motivated to get the best education and skills training I could, and be open to engaging well with blind and sighted people, and becoming the best me I could become! How To Rescue Floundering Meetings--Even When Not The Leader! By Dianna Booher, from the Forbes Magazine Chances are you're attending meetings and more meetings this year: strategic meetings, planning meetings, project meetings, staff meetings, virtual client meetings. Some produce results; others, only boredom. Granted, much of the blame for nonproductive meetings lies at the feet of the facilitator. (But that's another column altogether.) If you're trapped in a meeting meant to solve a significant issue yet you hear disaster unfolding all around, step up. Seize the opportunity to turn the impending mishap into a worthwhile effort, even when you're "just" a participant. Being known as someone who keeps the meeting on track can quickly establish your reputation as a leader. Here's how to make that happen. Ask For The Roadmap When meeting leaders routinely fail to prepare an agenda, prod them to do better with questions like these: "What are we covering today and in what order? I need to let someone know the least disruptive time for me to step out for a few minutes?" "What are we discussing today? Should we have any specific data with us?" Gradually, the leader will get the point about the usefulness of an agenda. Reframe The Issue To Be Resolved Or Decided Meeting discussions often flounder because the leader has failed to state the issue either clearly or succinctly. Do both and you will stand out in the group. Charles Kettering, the famed inventor and head of research at GM once observed, "A problem well stated is a problem half solved." For example, as your team struggles with a budget cut and brainstorms cheaper ways to market your services, you might reframe the issue so that the group refocuses in a completely new way: "What firm would like the opportunity to enter an arrangement with us, whereby they market our services in exchange for the leads to upsell their own products?" Your reframing may spur creative thinking when others are ready to give up and "go with what's comfortable." Guide From The Side With Strategic Questions When discussions seem to be going in circles or stall altogether, prompt with strategic questions to spawn deeper thinking: What's the purpose behind X? Are there other ways to accomplish the goal other than what we've tried in the past? How is this done in other industries? Would all experts in the field agree with what you've just said? What do you think their perspective and feedback on this issue would be? Any precautions? Expected payoffs? Identify And Quash Sidetracking Issues Some meeting participants fail to follow the meeting process: issue, reporting, analysis, discussion, summary, decision. Instead, it's as if they wander off into never-never land for long periods and then pop to attention sporadically for the sole purpose of asking a side-tracking question. Don't follow them on such rabbit trails. Stay aware of where you are in the meeting process on each given topic. Just as your GPS recalculates when you miss a turn, help your wayward colleagues reassess and stay on task when they stray from the main discussion. Try these recalibrating statements: "You may be right, Kristen. Let's put that idea in the parking lot for a later discussion. Back to the issue of..." Or: "That's an intriguing question. But first, we need to decide how to..." Become The Accountability Cop How many times have you walked out of a meeting thinking, "So what did we decide?" or "So who's doing what now?" Don't let that happen in those meetings you attend. If your meeting leader fails to summarize conclusions and assign tasks, then become the accountability cop yourself. Raise questions, ask for volunteers, and volunteer yourself: "What did we decide about X?" "Who's going to be responsible for Y?" "What should be our next steps to get Z done?" "Who wants to volunteer to do A?" If you're attending a meeting that doesn't deliver, your own competence and credibility are on the line. Rescue the meeting, and watch your reputation with colleagues soar. Dianna Booher is the bestselling author of 48 books. Her newest is Faster, Fewer, Better Emails. She helps organizations communicate clearly. Follow her at BooherResearch.com. The 2020 ACB Scholarship Application Is Now Open By Kelly Gasque The American Council of the Blind has a great opportunity for students who are legally blind to earn a scholarship, whether you are going to a technical college, an entering freshman, undergraduate or a graduate student. Over $55,000 in scholarships are awarded to students each year. To be eligible, you need to be legally blind, maintain a 3.0 GPA, and be involved in your school/local community. As a scholarship winner, you will experience firsthand ACB's national conference and convention in July, where you will meet other students who share the same life experiences, create lasting friendships, and network with individuals who understand what you are going through and can help you with your journey. Applications for the 2020-2021 school year can be submitted online from Friday, November 1, 2019 to Friday, February 14, 2020 11:59 PM (CST). All interested candidates must register for a new ACB account prior to submitting a scholarship application online. Visit: members.acb.org Candidates should receive an email containing a link to complete the scholarship application after their account request has been approved. Please note - the approval process could take up to three business days. For more information, please contact Nancy Feela in the ACB National Office at (612) 332-3242 or (800) 866-3242. We look forward to receiving your application materials. CCB Board Meeting Minutes Summaries By Linda Porelle CCB Board Meeting Minutes, Thursday, August 8, 2019 Roll call and introduction of guests. Present President: Judy Wilkinson 1st Vice President: Gabe Griffith Secretary: Linda Porelle Treasurer: Lisa Thomas Directors: Steve Bauer, Nelly Emerson, Pam Metz, Sharlene Ornelas, Paul Patche Jr, Rob Turner, Penny Valdovinos, and Frank Welte Joined call during meeting: Immediate Past President: Jeff Thom 2nd Vice President: Sarah Harris Director: Christy Crespin Approval of Minutes for Board Meetings of June 6 and June 27 Sharlene moved and Gabe seconded approval of June 6 meeting minutes. The motion passed unanimously. Gabe moved and Pam seconded approval of June 27 meeting minutes. The motion passed with Sharlene abstaining. Ardis Bazyn, former Secretary, will bundle her minutes and send them to the CCB office. President's Report Judy has written and will send request for rent modification to CCB's landlord. Due to excellent work by James Collins, CCB will definitely meet our Energy Upgrade California numbers for this year. In addition, it's possible that the EUC contract could be renewed. CCB will work with Disability Rights Advocates, along with Gene Lozano, on the issue of accessibility of the reservations process for California state parks. Update on Fundraising Summary: CCB will have a smaller auction due to scheduling problems with ACB radio. We will extend the deadline for chapter contributions to our auction, which will now be scheduled for early in 2020. Nicole Pacheco will attend a seminar on First Giving. Jeff expressed concern about the accessibility of their web site. Hulu matched a donation to CCB from Cathy Schmidt Whitaker. Judy thanked donors to the ACB Brenda Dillon Memorial Walk. She also noted that Aira will donate $10 per Aira subscriber to affiliates of their choice. Judy reported that our agreement to work with On-the-MuV is almost final. CCB may create a separate business entity for that project. She also reported that the Mel Kahn Trust may have a bequest for us. Judy is working on appointing a resource development committee. Judy has disbanded the Phoenix Committee since 7 members are now on the CCB Board. In addition, the CCB executive committee will begin meeting regularly to advise Judy. Treasurer's Report Summary: Our operating bank balance at 6/6/2019 is $30,396.00. Our operating bank balance at 8/8/2019 is $30,328.00. We received the 1st installment payment from Newel Perry Trust of $20,000 on 7/10/2019. As of Board Meeting, we had not received EUC payment for July but expecting it to come any day. The majority of August's monthly recurring liabilities have been made. We completed a workers comp audit. Lisa is looking in the Fresno area for an ongoing auditor for CCB. Lisa moved and Nelly seconded approval for the treasurer's report. The motion passed unanimously. Update on Convention Summary: Jeff reported that our 2019 convention in Fresno made money this year. As a result, the Board has voted to return to Fresno in June of 2020. Jeff will lead the same convention committee and welcomes ideas from members. Questions were asked about getting donor support and making plans for 2021. The contract for 2020 has been signed and the room rates are $10 higher next year. Board Liaisons to Chapters and Affiliates Summary: Gabe, Pam and Linda have prepared a Board Liaison List, assigning each Board member to work with and provide support to CCB chapters and affiliates. They will create a set of policies for implementing this new responsibility and present a policy draft to the Board in September. Hearing of the Public Not covered here. Adjourn to Executive Session to discuss contract matters. Executive Session All Board members were in attendance. Financial matters were discussed. Jeff moved and Gabe seconded that the CCB Board authorize the formation of a profit-making entity for the purpose of creating revenue for the organization. The motion passed unanimously. CCB Board Meeting in Executive session, Thursday September 12, 2019 The Meeting began at 7:05 PM. Present Officers: President: Judy Wilkinson 1st Vice President: Gabe Griffith 2nd Vice President: Sarah Harris Secretary: Linda Porelle Treasurer: Lisa Thomas Immediate Past President: Jeff Thom Directors: Steve Bauer, Christy Crespin, Pam Metz, Rob Turner, Penny Valdovinos, and Frank Welte Absent Nelly Emerson, Sharlene Ornelas, and Paul Patche Jr. The Board of Directors moved to sign the contract with On-the-MuV. Jeff moved and Steve seconded. The motion passed unanimously. The On-the-MuV steering committee will distribute all meeting minutes to the board for a year. Christy moved and Rob seconded. The motion passed unanimously. CCB will send a fund-raising appeal letter again this year. Rob moved and Christy seconded. The motion passed unanimously. The meeting was adjourned at 9:20 PM. CCB Board Meeting, October 10, 2019 The meeting was called to order by President Wilkinson at 7:10 PM. Present Officers: President: Judy Wilkinson 1st Vice President: Gabe Griffith 2nd Vice President: Sarah Harris Secretary: Linda Porelle Treasurer: Lisa Thomas Immediate Past President: Jeff Thom Directors: Steve Bauer, Christy Crespin, Nelly Emerson, Sharlene Ornelas, Paul Patche Jr, Rob Turner, Penny Valdovinos, Frank Welte Absent Pam Metz Approval of Meeting Minutes Sarah moved and Penny seconded approval of minutes for 3 meetings: an open board meeting on August 8, 2019 and executive Board meetings on August 29, 2019 and September 12, 2019. The motion passed unanimously. Treasurer's Report There was no treasurer's report this month, since Lisa was working on issues around an audit for CCB. Lisa will report again in November. President's Report The CCB office will be moving across the hall on October 30 to a smaller space with four offices. Our monthly rent will be $1800, for a savings of $1000. We will keep the same suite number. The Board wishes to thank Val Thomas, our landlord, and his attorney, Rich Elsworth, for their willingness to negotiate a new rental agreement with CCB. The Board also particularly wishes to thank Lexi Howard, our legal consultant for this rental negotiation, for her generosity in providing Pro Bono legal services to CCB. Report On CCB's Partnership with On-the-MuV The CCB Board has authorized President Wilkinson to sign the partnership contract with On-the-MuV. Highlights of the following discussion include: Establishment of a CCB business committee with six members, who are working on a business plan, First 4 units scheduled to arrive in 2 weeks and will cost under $500 and under $200, The business committee will develop marketing materials with the help of On-the-MuV, CCB members will have the first option to buy a sit mill before we start selling to other blind groups and the general public. Discussion of Future Convention Sites Steve moved and Sharlene seconded a motion authorizing President Wilkinson to investigate options for signing a multi-year contract with the Doubletree hotel in Fresno. A discussion followed on the potential benefit of such an arrangement, which include: A more stable rate over time, An increase in options for convention dates, An ability to focus more on convention content, Established familiarity with the location, Relative ease of access from most areas of the state. The motion passed unanimously. Auction Update As of this meeting, only 17 people had registered for the CCB auction on October 20. We have 43 terrific items to bid on. Thanks to co-chairs Andrea DeKlotz and Larry Gassman the to the TOG for posting the items on our site. We encourage everyone to sign up and spread the news to our communities. Membership Data Update A three-year comparison of CCB chapter and affiliate rosters with ACB records has uncovered serious discrepancies in our membership count. Judy and Jeff will work with Nicole and ACB to identify and correct these issues. Announcements AB 169 was signed by Gov. Newsom. Hearing of the Public One member asked if we are still collecting volunteer hours. The answer is yes. Adjourn The meeting adjourned at 8:33 PM. CCB Officers and Directors as of July 1, 2019 Officers President: Judy Wilkinson (2018-2020, 2nd term), San Leandro, 510-388-5079 C, judy.wilkinson@ccbnet.org 1st Vice President: Gabe Griffith (2018-2020, 1st term), Concord, 925-768-8195 C, gabe.griffith@ccbnet.org 2nd Vice President: Sarah Harris (2019-2021, 1st term), Fresno, 559-816-1507 C, Sarah.harris@ccbnet.org Secretary: Linda Porelle (2019-2021, 1st term), San Francisco, 415-577-8437 C, linda.porelle@ccbnet.org Treasurer: Lisa Presley-Thomas (2018-2020, 1st term), Fresno, 559-250-6760 c, Lisa.thomas@ccbnet.org Immediate Past President: Jeff Thom (2016-), Sacramento, 916-995-3967 C, jeff.thom@ccbnet.org Directors Steve Bauer (2019-2021, 1st term), Los Angeles, 310-738-2853 C, steve.bauer@ccbnet.org Christy Crespin (2019-2021, 1st term), Highland, 909-800-7189 C, Christy.crespin@ccbnet.org Nelly Emerson (2019-2021, 1st term), Santa Maria, 951-237-2960 C, nelly.emerson@ccbnet.org Pamela Metz (2019-2021, 3rd term), Chatsworth, 818-882-3610 H, pamela.metz@ccbnet.org Sharlene Ornelas (2018-2020, 2nd term), Oceanside, 619-339-6043 C, sharlene.ornelas@ccbnet.org Paul Patche, Jr (2018-2020, 3rd term), Sacramento, 916-662-0861 C, paul.patche@ccbnet.org Rob Turner (2018-2020, 2nd term), Sunnyvale, 408-203-9300 C, rob.turner@ccbnet.org Penny Valdovinos (2019-2021, 1st term), Bakersfield, 661-378-8282 C, penny.valdovinos@ccbnet.org Frank Welte (2018-2020, 1st term), San Leandro, 510-541-1442 C, frank.welte@ccbnet.org Publications Committee Linda Porelle, Chair, San Francisco, 415-577-8437 C, linda.porelle@ccbnet.org Mike Keithley, Editor, Mountain View, 650-386-6286 H, mike.keithley@ccbnet.org Susan Glass, Associate Editor Gabe Griffith Sarah Harris Lynne Nishihara Roger Petersen Bonnie Rennie Donations 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.